V’vfim i4 .- ~ 3 I O 7; O A. ' - “a p '.- .' -. iI Q This is to certify that the thesis entitled PSYCHOSOCIAL IMPACT OF HEARING LOSS IN THE ELDERLY AS REPORTED BY THE PATIENT AND A FAMILY MEMBER presented by Kay M. Thiede has been accepted towards fulfillment of the requirements for £31,; _/ Major professor Date 2/19/86 0-7639 MS U is an Affirmative Action/Equal Opportunity Institution WI it 1' I I Iii/iii In INT 3 1293 00658 ii {iii LIBRA MSU RIES RETURNING MATERIALS: Place in book drop to remove this checkout from your record. FINES wiII be charged if book is returned after the date stamped beiow. , ~ {1’ (‘1 fl ‘4'}0 vlag. 1A6 PSYCHOSDCIAL IMPACT OF HEARING LDSS IN THE ELDERLY AS REPORTED BY THE PATIENT AND A FAMILY MEMBER BY Kay M. Thiede A THESIS submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1986 ABSTRACT PSYCHOSOCIAL IMPACT OF HEARING LOSS IN THE ELDERLY AS REPORTED BY THE PATIENT AND A FAMILY MEMBER BY Kay M. Thiede A descriptive study was designed to determine patient and family member perceptions of the psychosocial impact of hearing loss on non-institutionalized elderly. Forty-eight subjects and family members completed mailed questionnaires which included the McCarthy- Alpiner Scale of Hearing Handicap. Participants were a convenience sample referred by private audiology clinics where certified audiologists had completed audiometric testing for classification of severity of hearing loss. While there were no significant differences in either psychological or social impact scores between patients and family members, the major concern listed by patients was lack of understanding of the hearing loss and the greatest problem noted by family members was the feeling that their relative was not admitting the loss. Both acknowledged the frustrations and annoyances of dealing with a hearing loss as major problems while neither group felt there was an impact on self-concept. An understanding of these discrepancies and similarities may be helpful to health professionals in educating older patients and their families about adjustment to hearing loss. ACKNOWLEDGEMENTS The support of many people has enabled me to complete this research project and I am pleased to acknowledge their special contributions. I wish to thank my thesis committee for their intellectual stimulation and emotional support. Thanks go to Barbara Given, Ph.D., thesis advisor, Sue Haviland, M.S.N., and Debbie Zuidema, M.S.N., from the College of Nursing, to Sister M. Honora Kroger, Ph.D., from the Department of Community Health Sciences and to Linda Lu Smith, Ph.D., from the Department of Audiology and Speech Sciences. Many thanks also to Bryan Coyle, statistical consultant, for his patience in re-editing and re-explaining and to Jayne Yoder for her accurate and efficient job in typing the final draft. I also owe a note of appreciation to the audiologists who referred patients from their clinics. These include Kathy Foltner, M.S., CCC-A, from the Audio Vestibular Testing Center, Peter Lapine, Ph.D., and Jan Forbord, M.S., CCC-A, from the MSU Speech and Hearing Clinic, Nancy Nelson, M.S., CCC-A, from a private medical practice, and Greg Stewart, M.S., CCC-A, from Sparrow Hospital. I thank them for the referrals as well as the audiometric data and extend a special thanks to Kathy Foltner and Jan Forbord for allowing me to observe at their clinics and for answering the numerous questions of a non-audiologist. A special thanks to Jill Burns who nurtured my child while I was pursuing my academic interests and especially to Jerry and Erica who tolerated an absent, and more often absent-minded, wife and mother during the research and writing process. TABLE OF CONTENTS LIST OF TABLES . . . . . . . . . . . ..... . . . . . . . . . vii L'ST OF F'GURES O O O O O O O O O O O O O O O O O O O O O O O O 0 ix I. THE PROBLEM Introduction .......... ...... .......................... Background ............................................ Statement of Problem .................................. Research Questions .................................... Definitions ........................................... Purpose ............................................... Importance ............................................ Limitations ........................................... Assumptions ......................... ......... ......... Outline of Remaining Chapters ............ ..... ........ II. CONCEPTUAL FRAMEWORK Introduction .......................................... 12 Pathophysiology of the Aging Ear ...................... 12 Anatomy and Physiology ............................ 12 Types of Hearing Loss ............................. 15 Causes of Hearing Loss ............................ 18 Caplan's Mastery of Stress Theory ..................... 20 Adaptation Theory ..................................... 27 Schematic Representation of the Conceptual Framework .. 33 Summary ............................................... 35 III. REVIEW OF LITERATURE Introduction .......................................... 37 Emotional Status and Hearing Loss ..................... 37 Aging and Emotional Changes ....................... 37 Impact of Hearing Loss on Emotional State ......... 39 Social Relationships and Hearing Loss ................. #5 Aging and Social Changes .......................... #5 Hearing Loss and Social Relationships ............. #9 Hearing Handicap Scales ............................... 53 McCarthy-Alpiner Scale of Hearing Handicap ............ 59 Use of Hearing Handicap Scales ........................ 62 Hearing Loss in Nursing Literature .................... 6h Summary ............................................... 66 iv IV. V. METHODOLOGY Introduction ......................................... Research Design and Questions ........................ Design ........................................... Research Questions ............................... Operational Definitions .............................. Use of Instruments ................................... M-A Scale ........................................ Reliability and Validity of M-A Scale ............ Sociodemographic and Health Information .......... Patient Questionnaire ........................ Family Member Questionnaire .................. Audiological Information ......................... Sample ............................................... Participants ..................................... Family Members ................................... Data Collection Sites ................................ Site I ........................................... Site II .......................................... Site III ......................................... S'te Iv .0.0...O0.0.0.0...IOOOOOOOOOOOOOOOOOCOCOOO Data Collection Procedure ............................ Protection of Human Rights ........................... Pilot Study .......................................... Analysis of Data ..................................... sumry OOOOOOOOOOOOOOO0......OOOOOOOOIOOOOOIOOOOOOOOO DATA ANALYSIS Introduction .......................................... Descriptive Classification ............................ Sociodemographic Characteristics .................. Health Status ..................................... Hearing Loss ...................................... Characteristics of Family Members ................. Research Question Results ............................. Research Question 1 ............................... Research Question 2 ............................... Research Question 3 ............................... Other Research Findings ............................... Additional Findings ................................... Reliability and Validity .............................. Sumary .OOOOOOOOOO0.0...O0..OD...OOOOOOOOOOOOOOOOOIOOO 68 68 68 68 71 73 7h 75 76 76 78 78 81 81 82 82 82 83 8h 85 86 87 88 90 9O 9O 93 96 99 100 100 IDA 108 113 118 119 121 VI. SUMMARY AND CONCLUSIONS Introduction ................................. ...... ... 122 Summary of the Problem ................................ 122 Sociodemograhpic Characteristics ...................... 125 Sex ............................................... 125 Age ............................................... 125 Marital Status .................................... 125 Living Situation .................................. 126 Summary of Statistical Procedures ..................... 126 Research Question 1 ............................... 126 Research Question 2 ............................... 128 Research Question 3 ............................... 130 Recommendations for Further Research .................. 131 The Instrument .................................... 131 Content ........................................... 133 Population ........................................ 135 Design ............................................ 135 Recommendations for Nursing Practice .................. 136 Recommendations for Nursing Education ................. 1&1 Discussion of Conclusions ............................. 1h5 Suggestions for Further Research ...................... 149 Sumary 0.00.00.00.0000......0.0.0.000...00.00.000.000.151 BIBLIOGMPHY O I O O O O O O O O O O O O O O O O O O O O O O O O 152 APPENDIX A -- Permission to Use Instrument ................... x -- Permission to Use Illustrations ................ xii Clinic Supervisor Approval ..................... xvii -- UCRIHS Approval ................................ xxi -- Original McCarthy-Alpiner Scale of Hearing Handicap - Form B ............................ xxii -- Consent Forms .................................. xxvi Questionnaire Packet -- Participant ............ xxxi -- Questionnaire Packet -- Family Member .......... xlii -- Suggestions for Scale Revision ................. xlviii menu: I I —=€)'fl I I vi 11. 12. 13. 1h. 15. 16. 17. LIST OF TABLES Age Distribution of Subjects . . . . . . . . . . . . . Socioeconomic Status of Subjects . . . . . . . . . . . Self-Rated Health Status of Subjects . . . . . . . . . Incidence of Chronic Illnesses Among Subjects . . . . Use of Prescription and OTC Medicines by Subjects . . Duration of Hearing Loss . . . . . . . . . . . . . . . Pattern of Hearing Aid Use . . . . . . . . . . . . . . Most Frequently Reported Problems--Participants . . . Least Frequently Reported Problems-~Participants . . . Pearson Product Moment Correlation of M-A Scores and Social ActiVity O O O O O O O O O O O O O O O O O O O O O O O O 0 Most Frequently Reported Problems--Family Members . . . . Least Frequently Reported Problems--Family Members . . . . t-test Results of M-A Scale Scores Between Subjects with Mild and Moderate Hearing Loss . . . . . . . . . . . . . Mean, Standard Deviation, and t-values of M-A Scale Scores Pearson Correlations of Psychological and Social Scores Between Patients and Family Members . . . . . . . . . . List of Highest ltem-by-Item Correlations Between Patients and Family Members . . . . . . . . . . . . . . . . . . . List of Lowest Item-by-Item Correlations Between Patients and Family Members . . . . . . . . . . . . . . . . . . . vii 90 91 93 94 95 97 98 101 102 103 IDA 106 107 108 109 110 111 18. ANOVA for Level of Social Activity . . . . . . . . . . . . . 112 19. Analysis of Differences in M-A Scores for Age, Sex, and Living Arrangement as Reported by Subjects and Family Members . . . . . . . . . . . . . . . . . . . . . . . . . 11h 20. Pearson Product Moment Correlations Between Health Status and M-A Scale Scores of Patients and Family Members . . . 116 21. Comparison of M-A Scale Scores for Spouses and Adult Children . . . . . . . . . . . . . . . . . . . . . . . . . 118 22. Statistically Significant Correlations Between Descriptive Variables . . . . . . . . . . . . . . . . . . . . . . . . 119 23. Comparison of Means and Internal Consistency Coefficients for M-A Scale and Revised Scale . . . . . . . . . . . . . 133 viii LIST OF FIGURES Anatomy of Outer and Middle Ear . . . . . . . . . . . . . Sagittai Cross Section of Cochlea . . . . . . . . . . . . Coronal Cross Section of Cochlea . . . . . . . . . . . . . Conceptual Framework of Capian's Mastery of Stress Theory Conceptual Framework of Roy's Adaptation Model . . . . . . ix 13 13 1h 22 3h CHAPTER I THE PROBLEM Introduction Among the losses associated with aging, sensory deprivation is a major one. Losing acuity of vision, hearing, taste, and smell is more than a physical problem. Reality orientation, self—care, safety, intellectual stimulation, and social interaction are all threatened by sensory Impairment (Ebersole 8 Hess, 1981). Hearing loss is the most common of these and often considered by those with multiple sensory deficits to be the most devastating (Butler 8 Lewis, 1982). Background Hearing deficit is a significant problem in the elderly, not only because of their personal struggle with communication and emotional reactions but because of its effect on their families and society as well (Hull, 1982; Alpiner, 1978; Maurer 8 Rupp, 1979). Most commonly, hearing impairment in the elderly is caused by presbycusis, a progressive loss due to degenerative changes in the inner ear and central nervous system with major effects on high tone reception and speech discrimination (Ebersole 8 Hess, 1981). Lack of auditory feedback results in emotional as well as physical deprivation with depression and even paranoia often linked to hearing loss (Butler 8 Lewis, 1982). Emotional impact has been discussed by many authors (Alpiner, 1978; Ebersole S Hess, 1981; Giolas, I982; Stephens, 1980) but probably most poignantly expressed in the quote from Maurer and Rupp (1979): "loss of vision separates people from things but the tragedy of hearing loss is that it separates people from each other” (p. 101). Another psychosocial problem is that, as a handicapper with a non-visible disability, the hearing impaired receive little sympathy or understanding from the general population (Butler 5 Lewis, 1981). Families are often puzzled by the person's behavior. It is difficult to comprehend why an elderly gentleman can understand his son but not his wife (whose voice is higher pitched) or why he startles at a moderately loud thump but cannot understand a question that is shouted right at him. Accusing him of selective listening, not trying to get used to his hearing aid, and withdrawing from social activity are typical family reactions which result in conflict rather than the needed support. Major problems occur because families are unaware of speech discrimination difficulties and believe that a hearing aid restores 'normal' hearing. Hearing loss is a societal prbblem as well. Of the 25.6 million people in the U.S. over 65 (Butler 5 Lewis, 1982), 20-902 have a hearing deficit that significantly interferes with communication, and in institutionalized populations the prevalence is considered to be appreciably higher (Ebersole s Hess, 1981). As the proportion of elderly in the population increases, from 112 in 1980 to a projected 202 by 2030 (Butler 5 Lewis, 1982), the incidence of people with impaired hearing will also rise, not only because of sheer numbers but due to certain biological and social characteristics; 1) hearing impairment, unlike other sensory losses, does not plateau but generally continues to deteriorate with advancing age (Ebersole 5 Hess, 1981); 2) increase in the life span of those with chronic Illness whose disease, e.g. diabetes (Taylor 5 Irwin, 1978), or treatment, e.g. ototoxic drugs (Thompson 8 Bowers, 1980), is likely to further reduce hearing acuity; 3) the increasingly noisy environment which is known to have a cumulative effect on hearing loss (Maurer 5 Rupp, 1979); and A) the increased dependency on verbal communication in our society, not only directly but via telephone, radio, and television. The economic implication of hearing loss has largely focused on the high cost of hearing aids and questionable reputation of hearing aid dealers. To curb such problems as fitting inappropriate aids, trying to sell unneeded new models, and charging exorbitant prices (Griesil, 1973), laws have been enacted to require initial evaluation by a physician if obvious pathological conditions such as ear deformity, ear drainage, dizziness, and unilateral or sudden hearing loss are present (Maurer 5 Rupp, 1979). In spite of such laws, increased media coverage, and advances in hearing aid technology, more information needs to be available to health care workers to assure their giving accurate advice and referral. Traditionally, there has been relatively little concern about hearing impairment in the elderly even among audiologists as evidenced by lack of research and minor emphasis in educational programs (Henoch, 1979). Medical research has mainly dealt with anatomical and chemical changes in the ear, and nursing, despite its emphasis on self-care, communication, and social interaction, has largely ignored the problem except for some basic information on relating to hearing impaired people encountered in clinical practice (Holm, 1978; Farrell, 1978; Ebersole 5 Hess, 1981; Campbell, 1989). Admittedly, it is not one of the most dramatic conditions; no one has ever died of a hearing loss. However, ability to hear is a vital function to consider in assessing the quality of life. Statement of Problem Psychological and sociological influences of hearing loss on auditory rehabilitation are discussed by many authors of gerontology and audiology texts. However, empirical research in these areas, particularly regarding family impact, has been glaringly absent. A concrete body of knowledge to serve as a theoretical base for intervention Is Important in this previously neglected area in order to know: 1) what aspects of hearing loss present most problems for the elderly; 2) what difficulties are most significant for the family; and 3) what are the similarities and differences in perceived problems of patient and family members? Because it has been generally recognized that measures of hearing acuity alone are not adequate predictors of success in rehabilitation, there have been attempts to measure psychosocial factors in what are generally referred to as hearing handicap scales. Their main objectives are to obtain a quick assessment of problem areas and to measure effectiveness of rehabilitation efforts (Giolas, I982). Early scales, such as those developed by High, Fairbanks, 5 Glorig (i969) and Nobel and Atherly (1970) mainly addressed problems related to pure-tone sensitivity such as non-speech sounds, tinnitus, localization, and speech distortion (Ciolas, 1982). But these scales also contained several personal opinion items and thus served as prototypes for further development of the concept of studying psychosocial impact of hearing impairment. Alpiner's (1971) Denver Scale of Communication Function was one of the first to measure personal perceptions and reactions to hearing loss rather than performance. His scale specifically included an area related to 'family,' but only four of the 29 questions are in this category. A similar problem occurs in using the Hearing Performance Inventory developed by Giolas in 1979. An attempt was made to compare perceptions of others with those of the hearing impaired elderly in the Self and Staff Nursing Home Hearing Handicap Index developed by Schow and Nerbonne (1976). The scale was basically a comparison of pure tone thresholds with hearing performance, and it correlated patient's self-assessment of hearing handicap with staff assessment of the patient's hearing performance. Perceptions of the effect of hearing loss on a patient was addressed in McCarthy and Alpiner's (1980) M-A Scale, which contains 3h items related to what the patient and family believe about the patient's attitude and behavior. However, only two or three questions deal with attitudes of the family themselves. Also, the last ten questions are inappropriate for most seniors as they pertain to employment. Recently a new scale specifically measuring psychological and social/"situational" problems in elderly hearing impaired individuals was developed by Ventry and Weinstein (1982). This hearing Handicap Inventory for the Elderly (HHIE) was designed to be brief to administer and easy to score, but until recently was used only in interview form. While the various hearing handicap scales have contributed to rehabilitation efforts by considering non-auditory factors and providing a measure of effectiveness, the family impact on hearing loss and rehabilitative efforts is not well addressed for several reasons: 1) There are usually few questions that relate Specifically to family factors 2) Comparable forms of the scales for the patient and family do not exist for most instruments 3) Comparison of results of different scales is not valid as some measure performance, which refers to observed behavior, and others measure perception, which reflects the person's internal beliefs or feelings Research Questions Based on the need for further information about family influence in rehabilitation of the hearing impaired elderly and present development of research in this area, the following questions will be addressed in this study: I) What are the hearing impaired elderly patient's perceptions of the psychosocial effect of hearing loss (as measured by an adaptation of the M-A Scale)? 2) What are the family member's perceptions of the psychosocial effect of hearing loss on their hearing impaired elderly relative (as measured by the M-A Scale)? 3) What are the areas of discrepancy between the patient's and family member's perceptions of the psychosocial effect of hearing loss? Definitions The following conceptual definitions are used in this study: ELDERLY--men and women in the last stage of the life cycle (over age 60) who are residing independently in the community (i.e., non-institutionalized). HEARING LOSS--auditory impariment that is sensorineural (or mixed with sensorineural as the main component) that has been verified by a certified audiologist. FAMILY MEMBER--spouse or adult child (or significant other) who maintains at least monthly contact with the patient. ADAPTATION--both the process of responding to physical and psychosocial Impact of hearing loss and the state achieved by this response (adapted from Roy, 1981). PERCEPTION--the patient's or family member's subjective, personal, and selective interpretation of environmental stimuli that relate to impact of hearing loss (adapted from King, 1981). PSYCHOSOCIAL EFFECT--impact of hearing loss on attitude toward self and feelings about the quality of relationships with other people. Purpose The purpose of this study is to examine perceptions of psychosocial impact of hearing loss on the elderly hearing impaired person from both patient and family perspectives using a tool that measures the same concepts for both groups in order to: 1) 2) 3) II) 5) 6) Obtain information and understanding of elderly patients' perception of hearing loss as it affects their interpersonal relationships Obtain data from families to determine their perceptions of the effects of hearing loss on an older relative Determine the areas of discrepancies between patients' and family members' perceptions of the impact of hearing loss Obtain data to serve as a baseline for counseling patients and their families Add to the body of knowledge related to social and psychological aspects of geriatric audiology Increase awareness of the impact of hearing loss on family relationships Importance The importance of this study is related to the concerns mentioned earlier which include the increasing number of seniors for whom hearing impairment is a problem, the need for empirical research on family relationships of the hearing impaired aged, and the relative lack of awareness about auditory problems among most health care professionals. While not a dramatic health disorder, it is widespread, and with technical advances in audiologic testing and amplification as well as someone to offer information, encouragement, and counseling, it is one Impairment whose negative impact could be considerably reduced. Limitations Limitations of this research project Include the following: 1) Small number of participants in the study 2) Use of a convenience sample 3) Subjects selected from those who have sought professional audiologic services A) Factors other than those addressed that influenced patient's or family member's perceptions, e.g. motivation, intellectual level, or response to the presence of other illnesses in the subject 5) Perceptions of spouses and adult children, both answering in “family“ category, may be quite different based on their own stage of development 6) 7) 10 Possible bias toward the middle class as subjects were selected from patients at private audiology clinics Untested validity and reliability of M-A Scale, which has not been used to any extent In previous research Assumptions In order to carry out this study as proposed, the following assumptions are made: i) 2) 3) ‘1) 5) 6) Hearing loss always has a negative impact and rehabilitation is desirable Both patients and family members are answering questions individually and honestly The M-A Scale will validly and reliability measure perceptions of both patients and family members The psychosocial impact of hearing loss is an important consideration in the quality of life of the hearing Impaired elderly Psychosocial effects of hearing loss are measurable and can be changed by planned intervention The family members have enough direct contact with the subjects to have a valid opinion about their hearing loss for Chi prc pm I d fra bu disc coll con: find imp] P’es Ii Outline of Remaining_Chapters In Chapter II there are three sections that provide a background for examining promotion of family support as a nursing intervention in helping the elderly adapt to hearing loss. A description of change in the aging ear provides a physiologic background for the problem. In the second section, an explanation of Caplan's Mastery of Stress Theory, is the theoretical basis for having family and professional support be as specific to individual needs as possible. A discussion of the Roy Adaptation Model, which Is the conceptual framework for nursing intervention with the patient and family, is found In the last section. In Chapter III, a review of the literature in geriatric audiology, particularly the effect of hearing loss on family relationships, previous attempts to measure psychosocial impact, development of the M-A Scale, and results of related studies, is discussed and critiqued. Proposed methodology including population, measurements, data collection, and analysis is discussed in Chapter IV, and Chapter V contains descriptions, tables, and statistical analyses of research findings. In Chapter VI, the conclusion, a discussion of implications for nursing Intervention, education, and research is presented. CHAPTER II CONCEPTUAL FRAMEWORK Introduction This chapter, which contains the conceptual frameworks that provide the background for this study, is divided into three major areas: 1) pathophysiologlcal changes in the aging ear; 2) Caplan's Mastery of Stress Theory and impact of psychosocial support; and 3) a nursing theory for intervening in hearing loss based on the Roy Adaptation Model. Pathophysiology‘of the Aging Ear Although the biological aspect of hearing loss is not the main focus of this paper, an overview of characteristics of the aging ear and pathophysiology are reviewed to provide background information. Anatomy and Physiology Because outer and middle ear structures can be most easily reviewed pictorially, a simple diagram is provided in Figure 1. Inner ear structures are much more complex, less frequently studied, and of special importance in a discussion of hearing loss in the elderly. Changes can occur in the cochlea itself, In the nerves that carry auditory signals to the brain, or often In both. The best way to describe the inner workings of the cochlea is to provide diagrams such as the sagittal and coronal cross sections as seen in Figures 2 and 3. Fooiplola of Hope: Three semicircular canal: , Mail-us ; . _ lncus Tympanit membrane Oval windOw Carriloqinou: Euliodlion lube ear canal Bony ear canal Figure 1: Anatomy of Outer and Middle Ear Malasanos, L., Barkauskas, V., Moss, M., 5 Stoltenberg-Allen, K. (1981). Health assessment (pp. 206). St. Louis: The C.V. Mosby Co. (Copyright 1981 by The C.V. Mosby Co., reproduced by_ permission). Scale Vauibuli Rainier; Membrane IParinlnoNI Scale Media IEr-aolvmvhl Suia VaIcuIar'n Organ 01 Can Spiral LW' t Basilar Membrane Sula Tvmpuu IParilymohI Figure 2: Sagittai Cross Section of Cochlea Martin, F.N. (1981). Introduction to audiologx (pp. 271). Englewood Cliffs, NJ: Prentice-Hall. (Copyright 1981 by Prentice-hall, reprinted by permission.) pr I. 1 y '90! .4 Figure 3: Netter, F.H. Pharmaceutical Company. 19 omen mswrs «(MIAMI W “W! ran-aunt or COCNIIAI WC! AND “S CONIANID OIOAN or com. Um: SWAING m CHIS WHICH at! N CONTACT WIT" TH! IECIOMI “MIAMI. was mm “SS I! COCK!“ NINE S. 90" VIM/IS «ION IIIOWNCY. DIG“ HICKS ACI a! “Stat (0011“ IONG WAVES “OW "IOU“(Y. IOVI "I00 ACT AI A"! Of (DOW ‘- M WAVES TWITEO 3:30“ W" N J $t‘;(:. “M O! m I“ (“IMO a 0'“ It!!!“ W . WAVES “KIND SCAM Warm a. wacr or wave' IN mm or in ON “(mam or CONMINIO Iowa PEIIIVMIH wwoow CAUSIS u ro nova N AND our at (1970)- Clinical symposia. (Copyright 1970 by CIBA-GIEGY / l I : E- / / .'., r c .. € \ z/ \‘I ION“ a. wave "ammo ACIOSS C0011!“ oucr H MEDIUM or rmruw. nan SCAM WIND“ 10 SCAIA "Nam. mom waves am “:0 wave; AIOUNO "NCO!!!“ M ”(I Of COCmm Coronal Cross Section of Chociea Summit, NJ: CIBA Corporation, reprinted by permission.) 15 The active structure of the inner ear is the organ of Corti, a network of fine halrlike projections above the basilar membrane. They receive the sound from the middle ear and transmit impulses via the eighth cranial nerve whose branches lie all along the cochlea. The particular area of the snail-like cochlea that is stimulated by sound depends on the frequency. As the coronal diagram shows, higher pitched frequencies are picked up at the basilar end and lower pitched sounds further toward the apex. Because the basilar end is most frequently affected by damage to the organ of Corti or deterioration of nerve branches with the aging process, loss of high frequency sounds is a common finding in the elderly (Newby, 1979). Types of Hearing Loss Major types of hearing loss are conductive and sensorineural. Conductive loss refers to a mechanical problem in the outer or middle ear. In the elderly long-standing conductive loss is often due to ogenital deformities, frequent ear Infections, or trauma to the ear. Recent onset of conductive loss is most often attributed to prolapsed canal, fixation of the malleus, incus, or stapes, calcification of ligaments, tumors, or, rarely, to increased rigidity of the tympanic membrane or blockage of the eustachlan tube by relaxation of tissues in the nasopharynx (Maurer 8 Rupp, 1979). Sensorineural hearing loss is the most common type of hearing impairment experienced by the elderly. Prebycusus is the term used to describe an otherwise unexplained, slowly progressive, non-conductive, symmetrical decline in hearing associated with the i6 aging process (Anderson 8 Meyerhoff, 1982). There are four categories of presbycusis depending on the primary structure involved. Sensory prebycusis involves atrophy of the organ of Corti (hair cells in the cochlea) thought to be due to reduced enzyme activity or possibly to the accumlation of iipofuscin (Maurer 8 Rupp, 1979). This condition is slowly progressive but generally affects only the basilar end of the cochlea, thus preserving hearing in the speech frequencies (Anderson 8 Meyerhoff, 1982). The primary lesion in 222521 presbycusis is a degeneration of neurons along the cochlea. This, too, is most prominent along the basilar end but the entire cochlea is often involved to some extent (Anderson 8 Meyerhoff, 1982). This is the type of presbycusis associated with phonemic regression, which refers to the phenomenon of a person having greater difficulty in speech perception than would be predicted from a measure of the pure-tone loss (Gaeth, 1946). Sggjgl presbycusis, sometimes called metabolic, is the third type. This Involves atrophy of the striae vascularis (blood vessel that supplies the cochlea) (Giolas, 1982) or to degeneration of vessels along the spiral ligament (Maurer 5 Rupp, 1979), thought to be due to arteriosclerosis (Anderson 8 Meyerhoff, 1982) or to "bony cuffs" gradually growing around the arteries compromising the blood supply (Krmpotic-Nemanic, 1971). The fourth type is known as cochlear-conductive prebycusis, and, as Implied by the name, refers to a mechanical problem in the cochlea. Some of these structural changes are thought to include l7 altered mass and increased stiffness of the basilar membrane due to calcification, atrophy, or infiltration of fats and cholesterol and to alterations in the spiral ligament which is the supporting structure of the basilar membrane within the cochela (Maurer 8 Rupp, 1979). As sounds pass through the cochlear area they are considered as to frequency, intensity, and time, while upper central pathways and the temporal lobe interpret and synthesize the message. Auditory pathways cross several times in the brain allowing for interpretation by both sides and localization of sound (Maurer 8 Rupp, I979). Basically, then, the elderly are most likely to have a defect In the reception of higher pitched sounds related to deterioration of the nerves in the inner ear or to nerves that transmit sound to the brain. Initially there may be little effect on hearing normal conversation because the loss is above the range of speech. As the deterioration progresses and lower pitched sounds are affected, normal speech may become difficult to interpret. Frequently, the comprehension of speech is even more difficult than recognition of such non-speech sounds as street noise at the same pitch. This occurs because higher pitched consonants such as "k" and "f" are mixed with the lower pitched vowel sounds giving speech a garbled quality and requiring considerable concentration to interpret. This concentration effort demands a level of energy that the older person may not have. 18 Causes of Hearipg Loss Many elderly people may have both a conductive and sensorineural component to their hearing loss, which is referred to as 'mixed.' However, this study will include only those whose audiometric data indicate their hearing problem is mainly due to sensorineural impairment. Conditions that may be associated with decreased hearing related to sensorineural deficits Include chronic nasal allergies, long history of smoking, and generally poor physical or emotional health (Thompson 5 Browers, 1981). Several systemic conditions are also known to contribute to hearing problems. Two of these are cardiovascular disease and diabetes, presumably because of the decreased blood supply to the cochlea which has a very high metabolic rate is is particularly sensitive to vascular interruptions (Anderson 8 Meyerhoff, 1979). Finally, central nervous system disorders such as cerebral vascular accidents and dementia have hearing manifestations because of the problems in interpretation of sound (Butler 8 Lewis, 1982). In a recent study of 38 patients with Alzheimer's disease, it was demonstrated that response to dichotic (two different stimuli to each ear) sounds was reduced, presumably because of temporal lobe damage resulting in metabolic changes and atrophy (Grimes, Grady, Foster, Sunderland, 8 Patronas, 1985). 19 It Is also Interesting to note that people whose primary language is not the one they normally converse In often show more problems with speech discrimination of the secondary language even though it was learned at an early age (Butler 5 Lewis, 1982), External insults to the hearing mechanism include ototoxic medications such as quinine, streptomycin, neomycin, nitrofurantoin, and high doses of aspirin (Thompson 5 Bower, 1981). More recently, beta-blockers have been Implicated in causing hearing loss along with several other eighth cranial nerve disorders, e.g. dizziness (metoprolol), vertigo (propanolol), and tinnitus (nadolol) (Faldt, Leidolm, 8 Aursnes, I98h). Fortunately, the documented cases have been rare and the hearing loss reversible with withdrawal of the medication. The contrast medium, metrizamide, used in CT scanning has also been found to cause transient hearing loss (Grant, Weiss, Novak, 5 Tobin, 1985). Noise has long been recognized as a cause of hearing impairment, manifested as a loss pattern similar to that of presbycusis but possibly with some recovery at the very high tones, at least during the early years of the disorder (Newby, 1979). To provide clarity about the manifestations of hearing deficit, especially as they are helpful In describing a person's relationship to his or her environment, several terms have been defined: HEARING IMPAIRMENT--general term for any type of hearing problem but distinguished from deafness, which Is the term usually reserved for total inability to receive aural stimuli. HEARING LOSS--measureable level of hearing impairment as in a pure tone audiogram or speech discrimination score. 20 HEARING HANDICAP--extent to which the auditory problem interferes with a person's activities or life-style. (Definitions adapted from Giolas, 1982.) Thus, there are numerous factors contributing to hearing loss and logically, as a person grows older, he or she will have accumulated exposure to increased numbers of them and for Increased lengths of time. Causes associated with nerve deterioration, such as exposure to noise or to ototoxic drugs, and especially circulatory impairment are most common in seniors and result In the typical presbycuclc pattern of high tone loss. As with many insults of aging, objective measures of hearing loss are not necessarily accurate predictors of how well a person will manage personal and social adjustments. Several stress theorists (Miller, 1983; Moos, 1977; Schlosberg, 1981) emphasize the importance of personality factors and social support in adaptation to a loss or stressful event. The focus of this study is on differences in perceived impact of hearing loss on the life-style of the elderly as described by the patients and family members. Therefore, a social support model has been selected which stresses the importance of specific types of support for specific needs. That model is Caplan's Mastery of Stress Theory and is discussed in the following section. Caplan's Mastery of Stress Theopy This section, a description of psychological and social influences of hearing loss, Is based on a psychosocial stress framework developed by Caplan (1981). Although his work is based 21 more on reactions to sudden or prolonged illness or catastrophic social events such as death of family members, divorce, or job loss, most of the concepts can be applied to hearing loss as well. A stress framework is particularly applicable for the elderly who commonly experience hearing loss as one of many stressful conditions and who face this combination of stressors with fewer physical, emotional, and financial reserves (Ebersole 8 Hess, 1981). It also seems that seniors respond to stress with a higher level of arousal and require a longer time to return to a baseline state (Schultz, 1982). Another reason for selecting this framework is that it can Interface with the Roy Adaptation Model of Nursing used in this study. The Caplan model is especially pertinent for a study of similarities and differences in interpretation of social support needs because this theory emphasizes not only the importance of support but that the specific type of help be appropriate to the needs of the patient at his particular stage of adaptation. The "mastery” response to stress Is defined by Caplan (1981) as behavior that: 1) "reduces the person's physical and psychological responses to the emotional arousal of stress to tolerable limits during and shortly after the stress"; and 2) "mobilizes the person's internal and external resources that enable him/her to change the environment or the relationship to it so that the stress is reduced” (p. #13). Caplan (1981) proposes that this mastery is carried out in four phases. This Idea can be viewed as a progression of internal changes one must make in personally overcoming a threat or loss and is seen 22 by Caplan as following a set of phases that overlap. By the time one reaches the end of Phase IV there is some ability to handle the situation and a “Mastery of Stress" (see Figure A). High Risk of Threat or Loss Task of Phase I Reducing threat or escaping. Task of Phase II Acquiring new abilities to change circumstances Task of Phase III Defending against disruptive emotional arousal. Task of Phase IV - Coming to terms with the event and Its aftermath. Resulting in reduced risk of threat or loss because of: 1) Increased tolerance of emotional arousal. 2) New ability to reduce threat or find alternate satisfactions. Figure A: Conceptual Framework of Caplan's Mastery of Stress Theory The task of Phase I Is to act directly on the treat to reduce its effect or to escape from It altogether. Stress in this phase is often manifested by cognitive problems such as difficulty concentrating, making judgments, and remembering, and is probably more often seen In acute loss such as death of a loved one. However, In addition to the Intellectual dysfunction, identity and self- concept problems often arise. Cognitive problems in the person with a hearing loss are often attributed simply to Inability to hear information or to concomitant changes of aging but can also be related to frustration or anger. The self-concept problems are 23 evident In the withdrawal to avoid mistakes in conversation (Hull, 1982) and feelings of mortificatlon or shame because of the impairment (Giolas, 1982). Because cognitive and self-concept problems are the characteristics of this phase, it is In these areas that help is needed from the social support system (Caplan, 1981). Forms of help may include gathering information on hearing loss and possible sources of help, then encouraging systematic exploration of logical solutions. The support system in this phase, especially if it is people he or she has known a long time such as family and close friends, also offer a sense of continuing Identity, encouragement to pursue despite discomforts, and an expectations of success in overcoming the problem (Caplan, 1981). One of the most vital areas of support in hearing loss is helping maintain Interest and continued perseverance in aural rehabilitation. Lack of motivation is the number one block audiologists have in working with the elderly (Kasten 8 Miller, 1982). While motivation cannot be forced by nagging or even "friendly encouragement" (Kasten, 1979), social support can be vital in maintaining interest in using a hearing aid or attending classes in speechreading. On the other hand, failure to provide support such as angrily shouting at the person or not bothering to talk to him or her at all will result not only in decreased communication but will lower self-esteem and lead to withdrawal and isolation from former roles and activities. 21. An individual's response In Phase II is concerned with the acquisition of behaviors to deal with the circumstances that have occurred (Caplan, 1981), In the case of hearing loss the ability to continue normal social activity or work roles. For example, persistent practice in using a hearing aid in increasingly more complex situations will make the goal of satisfactory interaction at a 50th annual class reunion more attainable. Thus, the type of support needed in this situation Is someone to offer continuing encouragement in pursuing the goal when the stressed individual ls becoming overwhelmed. In a close relationship such as a family, the members under stress give cues such as an increase in suggestibillty and compliance. Ideally there is someone to respond with the needed support such as encouragement to attend classes in aural rehabilitation. A major problem occurs with social isolates, people whose major support ls unavailable (e.g. the recently widowed and the institutionalized) (Caplan, 1981). Lack of needed support may undermine self concept and lead to a negative pattern of adaptation such as a generalized angry, mlstrustful attitude that most certainly will affect social and work roles. In Phase III the person must learn to defend against emotions such as anger, anxiety, and depression brought on by the stressor. Most people use defense mechanisms similar to those they used in the past. The most frequently noted are denial, selective inattention, and withdrawal (Caplan, 1981). These defenses are commonly used by the hearing impaired to minimize the hearing loss (Alpiner, 1978), to avoid social gatherings, and to "tune out" because the concentration 25 required to piece together a partially heard conversation is too great (Maurer 5 Rupp, 1979). Projection is another commonly seen defense mechanism in hearing loss, often expressed as a complaint that other people are mumbling (Maurer 8 Rupp, 1979). Undoubtedly, a pattern of constantly blaming others will contribute to any type of interpersonal or work role conflict. The support required at this phase is to help the affected person deal with his emotions and help him or her see beyond the Immediate wish to escape from the uncomfortable situation and feelings (Caplan, 1981). Specific types of emotional help offered by the social support network can include: I) supporting defense mechanisms such as denial until a time when stress is decreased and the person can begin to cope; 2) serving as a cushion to absorb or dissipate some of the feelings of hostility, hopelessness, and guilt; and 3) providing reassurance by setting an example of calm, reasonable behavior (Caplan, 1981). In Phase IV the person deals with the intrapsychic work of coming to terms with the problem and its sequelae (Caplan, 1981). Grief over a lost ability, such as hearing, can be similar to grieving over a lost loved one and may take years to accomplish (Butler 5 Lewis, 1981). It is not unusual for an elderly person with a handicap to give up trying to recover. This may be observed as a loss of interest in rehabilitation, depression or withdrawal, or displays of anger (Pollack, 1978). 26 The work of the support system in this phase is to offer nurturance and confidence that the person will recover, at least to some degree, and go on with his or her life (Caplan, 1981). Support may also help to reduce the self-blame or blame of others for the problem (Caplan, 1981). And because the emotional reactions tend to be prolonged, the assistance is most helpful if sustained over time, one reason for which the family, If available, is in an excellent position to help. With the hearing impaired the family can encourage regular efforts to use a hearing aid, continue to Include the patient in social gatherings and decision making, and focus on remaining abilities rather than losses. Such activities are vital in maintaining self concept, family and social roles, and an adequate level of Interdependence. The emphasis of Caplan's framework Is not only on the importance of support in stress situations, but also on the need for support to be appropriate to the situation and the patient's needs. Comparison of the patient's and family member's perceptions of the situation and significance to the patient would then seem to be an important first step In helping the family member or significant other provide that support. In this study, the focus is on examining psychological and social perceptions of hearing loss as seen by the patient and by a family member. By looking at similarities and differences in these perceptions the nurse will have some guidance In directing counseling at strategies family members can use to provide the most meaningful help to the patient. As with other types of losses (e.g. 27 Independence, companionship), nursing management needs to be specific to the patient's concerns (Carnevali, 1979). For example, it does little good to elaborate on special amplification systems in a concert theater if the main concern is not being able to converse with a daughter on the phone. In order to look at the psychosocial impact of hearing loss on both the patient and the family member as a problem for nursing assessment and intervention, the situation will be viewed from the perspective of the Roy Adaptation Model as described in the next section. Adaptation Theory Because hearing impairment Includes physiological, psychological, and social components and the nurse's role is as a facilitator of the patient's response in all three areas, the Roy Adaptation Model for nursing will be used as a conceptual framework for this study. Sister Callista Roy's theory includes the basic concepts of man, environment, and health interacting to stimuli in four modes. These concepts will be outlined here with examples and relationships to hearing loss. Roy, in her conceptual framework, sees “man" as an organism in constant interaction with his or her changing environment; coping is by both innate and acquired mechanisms (Roy, 1971). Her definition of man can refer to one person or to a whole society depending on the situation (Roy, 1981). For this paper "man" will refer to the person experiencing the hearing loss, and, In some of the psychosocial dimensions, to the family member as well. 28 Environment includes all the Internal and external stimuli to which a person must respond. Roy subdivides stimuli into three types: 1) Focal stimuli-~those immediately confronting a patient, e.g. person being unable to hear telephone ringing 2) Contextual stimuli--all other stimuli present at a given time, e.g. radio on and dog barking 3) Residual stimuli-~person's beliefs, traits, attitudes, e.g. feeling that wearing a hearing aid would cause people to stare at them "Health" is defined as a continuum from top level wellness to death. "Man" can be located at any given point as he or she reacts to stimuli (Roy, 1970). Degree of hearing loss alone will not cause one to assume a specific point on the health-Illness continuum, but when combined with other chronic diseases, patient's perception of the handicap, facility of social interaction, and support of family and friends, one can get some perspective of the "health" state. The basic concept of the model, "adaptation," is defined by Roy as both the process of responding to stimuli and the state achieved by this reSponse (Mastal, 1980). The process includes the regulator and cognator reflexes acting on the stimuli. The regulator reflexes refer to the unconscious responses of the autonomic nervous system, e.g. jumping at a loud sound, and the cognator responses are deliberate actions based on recognizing, thinking, and judging, as a hearing impaired person sitting in the front row at church so he can hear better and speech read. (This is a more accurate term for 29 lipreading because It takes into account facial expressions and gestures as well as lip movements, Martin, 1981.) The end state of this "adaptation" process Is the theoretical position on the health-illness continuum that a person occupies. It is more theoretical than actual because the person Is always in the adaptation process to some degree. Results of the adaptation process are not always positive. According to Roy (1970), adaptation failure occurs if there is: 1) Lack of awareness of needs (as with a person who is unaware of a significant hearing loss because it has been so gradual) 2) Inability to identify the goal (as in withdrawing from all former activities and sitting home doing nothing) 3) Inability to select means to a goal (as in wanting to go to the theater again but not realizing one could ask for special seating or an earphone amplifier) A) Failure to reach the goal (as when communication is still severely restricted after obtaining a hearing aid and learning how to use it) Another Important concept in Roy's model is the role of the nurse which is described in terms of assessment and intervention. The assessment includes two phases, a first level assessment looking at the obvious or presenting problem and a second level that searches for other contributing causes to the patient's behavior (Roy, 1981). Intervention is based on the two level assessment. Roy (1981) believes It Is the nurse's job to manipulate the environment so that 30 the patient can cope. However, the nurse must be sure it is the environment that is being manipulated and not the patient. Roy distinguishes medical care from nursing care by saying it is the task of the physician to move the patient along the health continuum and the nurse's function to help the patient respond to stimuli he or she ls receiving at that position on the continuum (Roy, 1970). This medal of assessment and intervention can readily be extrapolated to the hearing loss situation. The presenting problem may be, and often is, the family complaining about an elderly member becoming irritable and unwilling to leave the house. Level 1 assessment is an apparent psychosocial problem of withdrawal. Further evaluation, however, reveals the patient gets confused in a group where there are several people talking at once and doesn't respond at all when called from another room. Testing reveals marked sensorineural hearing loss at high tones. Intervention ls aimed at explaining the condition to both the patient and family, encouraging environmental changes, and referral for hearing evaluation by a specialist. The last set of concepts from the Roy model that will be discussed are the four modes in which adaptation occurs. Incorporating man as a biopsychosocial being, these modes with examples related to hearing loss are: 1) Physiological needs--in this situation, the inability to hear sounds in adequate range of loudness and pitch to communicate 31 2) Self-concept 3) a) b) e) Physical-loss of ability to hear normally Personal self I. Moral-ethical--a judge not admitting his Inability to hear testimony 2. Self-consistency--anxiety aroused by strain of trying to guess what people are saying and not reveal handicap 3. Self-ideal--resiting use of a hearing aid because of how it will look Interpersonal self 1. Social disengagement--withdrawing from family and friends because of hearing loss 2. Aggression-~becoming irritable with family when they encourage having a hearing evaluation Role mastery a) b) Role failure--inability to continue weekly phone calls to granddaughter who lives across the country threatens "grandfather" role Role conflict--feeling he can still drive car in heavy traffic and wife telling him it's not safe because he can't hear horns or sirens 32 A) Interdependence a) Dysfunctional Independence--refuses to have pharmacist repeat directions for taking a medication even though many orders were verbal and he didn't understand b) Dysfunctional dependence--lets spouse do all the ' talking when meeting an acquaintance (from Roy, 1973) Roy (1976) believes it is beneficial for one person to do the assessment in all four modes to enhance the notion of man as an integrated being. Some other positive aspects of the Roy model as seen by nurses who have used it in practice are: I) the holistic view of the patient allows for handling many variables at once; 2) it considers the positive aspects of a patient's behavior as well as the negative (Wagner, 1976); and 3) it encourages teaching the patient to use his or her own resources, which is especially important for the elderly needing to assert their remaining independence and autonomy (Brower S Baker, 1976). Among the negative aspects of the model cited in the literature, those applicable to ambulatory care include: I) blurring of self-concept, role function, and interdependence modes (Wagner, 1976); 2) the patient's occupying only one status at a time (Mastal, 1980); and 3) the implication that nursing efforts don't help move a patient along the health-illness continuum but only help him or her respond to stimuli at that particular position. 33 Schematic Rgpresentatlon of the Conceptual Framework The center circle in the diagram represents the person with a hearing loss interacting with his or her environment In the four modes (physiological, self-concept, role function, and interdependence) via the three types of stimuli (focal, contextual, and residual) (all described in the previous section). This particular circle could lie anywhere along the health-illness continuum depending on the patient's adaptation to dealing with a hearing loss at any particular time. Nursing assessment of patient's health status and adaptation level Is based on the obvious or presenting problem (level I) and on contributing causes (level 2). The person affected by hearing loss can make positive or negative adaptation to this problem depending on awareness of needs, ability to recognize goal, and setting means to achieve it. It is in these areas that nursing intervention in strengthening the social support system can be instrumental in influencing the patient's ability to achieve his goal. The insert (box) specifies areas of nursing intervention for working with families to provide the appropriate type of support and is the link between the Adaptation Model and Caplan's Mastery of Stress Theory. The Adaptation Model is helpful as a guide to the nurse in assessing sources of stimuli affecting a patient's problem and in considering potential effect on life style (response modes). 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Bow zoom. .30 coco. ...eo . ass 9 23:3. .v 2 2:34 .2. a... fine... o... .25 Ron 2 acaoE \9 to“. o. acnoE .02 La. 623 2 3:34 .n.._..s.a. .... ... .3 2 3:32: .o r L Son 33:02 .88. 32.328 30a 22:03 2 3:34 .u 2 3:32.. .« noon: .0 32.2254 .w noooc .o «no: .223 .0 .33 .P ZOF¢FQ.k<0mz 35 of the patient's adaptation process. These strategies may be used directly by the nurse or taught to family members or significant others In the patient's network. On the far left the proportionally large circle labeled "hearing loss" in the rectangle representing "man” or "individual" Indicates the negative adaptation resulting when this sensory defect becomes an overwhelming problem affecting a great portion of the patient's life-style. The result is that the patient withdraws to a relatively small sector of his potential environment. Positive adaptation is illustrated at the far right with hearing loss affecting only a small portion of the patient's interaction process allowing the person to be a more active participant in his or her environment. Summary Hearing loss in the elderly Is an example of a physical condition that is more threatening to quality of life than it is to biological existence. While there are helpful medical and audiological treatments, psychological and sociological interventions are essential as well because of the impact on self-concept, role behavior, and social interdependence. Roy's model is helpful in assisting the nurse to view the patient wholistically and consider her role in helping the family as well as the patient. However, according to Caplan's Mastery of Stress Theory, the assistance of a support system, in order to be most helpful, must be appropriate to the needs of the patient, and the health care provider must be cognizant of this in offering assistance. 36 A review of the literature related to emotional and social impact of hearing loss, attempts to measure extent and type of hearing handicap, and a critique of the major instrument used in this study is presented in Chapter III. CHAPTER III REVIEW OF LITERATURE Introduction The intent of this thesis Is to study the psychosocial impact of hearing loss on the elderly for the purpose of enhancing adaptation to this sensory deficit, especially as it relates to family life. To familiarize the reader with previous work done In this area, this section includes a review and critique of professional literature and research studies of emotional and social changes associated with hearing loss in the elderly. For organization of the discussion the chapter will be divided into the following sections: 1) hearing loss and emotional status of the elderly; 2) hearing loss and social and family relationships; 3) measures of psychosocial impact of hearing loss; and h) development and use of the McCarthy-Alpiner Scale of Hearing Handicap. Emotional Status and Hearing Loss Aglpg and Emotional Changgg For purposes of this study "psychological" state or "psychological" Impact of hearing loss will be discussed in terms of emotions or moods rather than from a cognitive or psychomotor perspective. Theoretically emotions and moods can be distinguished, with "emotions" associated with an environmental stimulus causing a high level of arousal of short duration and "mood" occurring from an intrapersonal experience resulting in a moderate level of arousal for a longer period of time (Schulz, 1982). In this paper both terms will be subsumed under the terms "emotional" or "psychological" status. 38 Normal personal and emotional changes are apparently least studied among the elderly than any other age group. While there are developmental theories of childhood and young adult life including Erickson's (1963) stages of psychosocial development, Havighurst's (1973) theory of flexibility and adaptation to new roles, and Kohlberg's (1969) stages of moral development, there is little carry over of a similar degree of interest into advanced age. Emotional changes In the elderly that have been noted in the literature include more pervasive grief reactions secondary to significant and multiple losses, greater feelings of helplessness, loneliness in the sense of physical survival as well as emotional Isolation, increased sense of free floating anxiety related to fears of physical and mental illness, financial indigence, constant change (Butler, 1982), and more introversion (Neugarten, 1977). Schulz (1982) believes that while emotional experiences do change among the elderly, most adapt without obvious pathology because of a balance in positive and negative effects. While the aged are more likely to experience new events that are negative, fewer positive events, and a decreased sense of control, this is counteracted by a decreased expectation of positive events and a change in reference group. That is, they begin to compare themselves to others their age rather than to young adults. There is also evidence that because of central nervous system changes older people may experience fewer emotions within a day's time but once aroused will require longer to return to a baseline 39 emotional state than will a young adult. In addition, any given experience may take on a different connotation over the years (Schulz, 1982), such as overnight guests resulting in the stress of increased work load rather than the enjoyment of company. And as with many other changes of aging, the greatest variation in emotional status depends on individual conditions such as state of health (Schulz, 1982), motivations, Intellectual background, and social environment (Kart, 1978). Impact of Hearipg Loss on Emotional State The relationship of hearing loss to personality changes can be viewed from several perspectives. One is that the hearing impairment Is another of the losses or negative impacts on emotional stability. Another viewpoint is that the accumulation of personality changes from whatever reason renders the individual less interested in the outside world and less able to adapt to hearing loss. Emotional responses from defense mechanisms such as denial and projection (Alpiner, I982; Hull, 1982) to overt psychoses including depression and paranoia (Butler 5 Lewis, 1982; Giolas, 1982) have been attributed to the hearing impaired. The most commonly observed defense mechanisms include denial, projection, and withdrawal, often with all three present at the same time (Alpiner, 1978). Denial, of course, is a method of minimizing the hearing impairment or communication difficulty, often by saying the hearing loss is not severe enough to warrant use of a hearing aid. Denial is viewed as a temporary coping method used to help one manage until a better strategy is found (Luterman, 1985). However, #0 specific factors leading to denial are less readily understood. Attempts by McDavis (1983) to link denial to locus of control or levels of hearing impairment were inconclusive. After predicting that denial would be more apparent in people with minimal hearing loss (where they might still have a chance to conceal the problem) and internal locus of control (where self-determination is of high (value), questionnaires were administered to 39 elderly people attending a geriatric clinic in Kansas. Neither hypothesis was substantiated although denial peaked with a moderate level of hearing loss which could have been an artifact of the small sample size in each cell. Projection is a psychosocial method of transferring the problem to another person (Maurer 8 Rupp, 1979), often seen in the hearing Impaired as a complaint that other people are mumbling. Alpiner (1978) also associates projection with the loss of ability to discriminate nuances of meaning from inflection; thus, the person reacts to words rather than meaning intended by the speaker and then accuses him or her of poor communication. Withdrawal is retreating from stimuli that aggravate problems (Maurer s Rupp, 1979). In the situation of hearing loss this may include avoidance of social situations or even withdrawing from sources of help such as not returning to the clinic for appointments; this may indicate denial and projection as well in refusal to acknowledge "ownership" of the problem. hi Rigidity as a personality trait was studied by Eisdorfer (1960) at Duke University in a group of elderly who had visual impairment, hearing loss, and combined sensory deficits. Rorschach tests were administered to determine incidence of rigidity. It was hypothesized that subjects with both visual and hearing impairment would be more likely to show high rigidity scores than subjects with only one sensory deficit. In actuality, the incidence of high rigidity scores among those with hearing loss was nearly equal to that of the multiply Impaired, while the scores of those with uncompensated visual loss were similar to those of the general population. While depression is often associated with hearing loss (Butler 5 Lewis, 1982; Giolas, 1982; Neimeyer, 1973), there have been rather few well controlled studies to substantiate the connection. Herbst and Humphrey (1980), in their study of hearing loss, dementia, and depression in 253 non-institutionalized elderly people in Britain, concluded that there was a significant relationships between deafness and depression independent of age, socioeconomic status, and dementia. However, another British study conducted by Jones, Victor, and Vetter (198%) led them to conclude that hearing loss was associated with depression and anxiety, but not to a significant extent if adjusted for physical disability. This study was also based on a large sample (657), but identified the hearing impaired on the basis of self-report rather than audiometric findings as did Herbst and Humphrey (1980). #2 Other forms of psychiatric disturbance such as anxiety and paranoia have frequently been linked to hearing loss, but again research conclusions are inconsistent. A study of 500 subjects at the Royal National Throat, Nose and Ear Hospital, London, reported by Stephens (1980) linked introversion, neurosis, and anxiety with hearing Impairment. Thomas and Herbst (1980), in a study of 211 London area people of employment age, found that the prevalence of anxiety and depression were much greater in persons who had both pure tone and speech discrimination loss than in the general population or those with either pure tone or discrimination loss, but that there was no relationship between hearing loss and suspiciousness. However, in an American study of 239 elderly men and women Thomas and associates (1983) could find no adverse effect of hearing loss on memory, social interaction, or emotional status which was measured by a composite score of depression, anxiety, hostility, and somatic complaints using the Kellner-Sheffield Symptom Questionnaire. This group of subjects may have been quite different from the general population In that 902 had completed high school and all were determined by medical history and physical examination to be free of major illness; furthermore, none were taking prescribed medications. It could be possible that this population was functioning at such a high level prior to hearing loss that deleterious effects of hearing Impairment may not be recognizable in the instruments standardized on the general population. Also, the subjects studied would likely have more personal, social, and financial resources available to adjust to a sensory defect. #3 Similar findings were substantiated by Dye and Peak (1983) who found that tests for paranoia and depression were at normal levels in both the "more" (greater than 35 dBL) and "less" (less than 35 dBL) severely hearing impaired veterans in their study. Among other instruments including seven subsets of the Wechsler Memory Scale, scales of communication performance and function, and a test to assess lateralized brain functioning, only two of the memory tests reached significance in assessing differences between these groups of male veterans who ranged in age from 45 to 83. In an attempt to learn from hearing impaired patients their perception of problems, Tyler, Baker, and Armstrong-Bednall (I983) asked 500 people to simply list, in order of importance, "the difficulties which you have as a result of your hearing loss." Subjects included 250 hearing impaired people who had never worn an aid and 250 who had hearing aids but were attending a clinic because of continued hearing difficulties. While personal problems were not as prevalent as some situational problems, they tended to receive a higher rating. In other words, not as many people reported embarrassment, loneliness, nervousness, or lack of confidence, but those who did considered them more significant than such problems as not understanding the television or difficulty conversing with strangers. Because of the open-ended format the authors recognized the possibility of some significant problems not coming to mind or thought not to be among the expected range of answers. Ah In a smaller more informal study by Stream and Stream (1980) 15 elderly hearing impaired persons were paid to discuss their needs related to hearing loss at a workshop. Most concerns concentrated on lack of community resources and public information about hearing loss. On a personal note all reported feelings of embarrassment, isolation, and withdrawal. Many said they were frustrated in trying to use visUal cues and several noted that attempts to actively communicate were just too much effort. . These reasons for not pursuing aural rehabilitation have been supported in other literature. In an article by Hardick 5 Gans (1982), the authors list decreased need for communication since retirement and being told there Is no help for nerve deafness as other factors that diminish interest In hearing evaluation and follow-up. In summary, it is noted that emotional problems ranging from embarrassment and nervousness to psychiatric illness have been linked to hearing loss but attempts to substantiate these connections through research have been inconclusive. Variations in methodology make it difficult to compare research findings. More basically, there is the problem of studying the multi-faceted concept of "emotional response” in the complex nature of the human being. Perhaps researchers have not yet discovered the appropriate questions to elicit the specific dimensions of the emotional impact of hearing loss. 45 Social Relationships and Hearipg Loss Aging and Social Changgg While the mass media have projected an image of the elderly sitting forgotten in a nursing home, the reality of family dynamics among the aged is nowhere near that bleak. Only 52 of the senior population reside in an Institution and 832 have at least one child less than an hour away (Hull, 1978). Butler and Lewis (1982) state that "most (children) have genuine affection as well as a sense of ethical responsibility that motivates them to generally assist elderly parents” (p. 152). Thirty percent of those over 65 reside with a child, often a daughter. This arrangement is usually based on family dynamics with parental care being provided by the one who lives closest, is best off financially, is most or least favored, or who is always prevailed upon by other siblings (Hull, 1978). As with variations in individual adaptation some families manage well no matter how dire the circumstances and some always seem to be in crisis or tension. With the Increase in life expectancy, couples are spending one third of their married lives together after the last child leaves. Divorce rates for seniors are still fairly low, probably because of their traditional view of marriage and fear of risking loss of support at such a late stage of life (Butler 8 Lewis, 1982). Thus, spouses are the most likely support for couples but the situation depends on the health of both and the long-term quality of the relationship. After the spouse, children tend to be sought first in time of need and are likely to be the only other people seniors will A6 approach for financial help (Siemaszko, 1980). In personal experience of administering questionnaires of social networking to over 60 seniors nearly all related relationship to children and other relatives higher than relationships to friends and neighbors even though the family members lived across the country and were seen infrequently. While it seems that children's involvement with elderly parents has not diminished, it has changed from a true extended family to a psychologically extended one; that is, supports (e.g. gifts, services, and financial assistance) are maintained but the people live in separate households (Johnson 8 Bursk, 1977). It seems that relationships are more stable this way than if living together, but health of the elderly parents is the major determinant of living situation. Another trend that may emerge is grandchildren assuming more responsibility for the elderly as life span is extended and there are fewer family members in each generation to serve as caregivers (Butler 8 Lewis, 1982). Johnson's (1977) study revealed relationships between parents and adult children were enhanced when the older adult remained active and engaged. Also, the relationship was mutually rated higher when the elderly and their adult children shared similar values and realistic perceptions of each other. Among seniors who are emotionally dependent on their children and feel they don't see enough of them, there is a tendency to Interact more with neighbors (Siemaszko, 1980). #7 As the above trends would indicate, there is no single type of support most needed by the elderly. Specific types of support have been identified that include: 1) expression of positive affect; 2) acknowledging appropriateness of a person's feelings or beliefs; 3) encouraging expression of feelings; h) offering advice or information; 5) providing material aid; and 6) conveying to the individual a sense of belonging (Wortman, 198A). The type of support needed or requested most often depends on the situation or the provider (Siemaszko, 1980; Wortman, 1989). Traditional approach to social support indicates that anything that increases interaction or strengthens relationships is a positive gain. Wortman (198h) challenges this idea in several ways. First, she believes that certain types of support are most helpful or appropriate from specific sources. For example, advice is better accepted from physicians than from family members, and expressions of understanding are more meaningful from other patients with the same condition than from healthy friends. Another critique of social support is that while a small, close network may be supportive in crisis, it may be less beneficial in prolonged stress where other resources and frames of reference would aid in problem-solving. And third, she fears that too much support may be as detrimental as too little, implying that the patient is incapable of solving his or her own problems. Siemaszko (1980) is especially concerned about this latter phenomenon occurring in the elderly because of the media portraying them as incapable and needy. #8 Furthermore, Wortman (198h) notes that individuals In a person's social network may be unaware of how best to offer help citing the example that accompanying a patient to treatment may be perceived as more helpful than offering advice. As emphasized in the Caplan Mastery of Stress Model (1981) specific types of support are most helpful in certain situations; helping patients and support persons to discover specific measures may be an important strategy for professional counselors. Another consideration is the extent to which members of the support system know each other and can provide a united effort (Wortman, 198k). This can easily be extrapolated to the hearing loss situation In which one family member encourages the patient to have an evaluation and try a hearing aid while another relative says it won't do any good anyway and he or she shouldn't waste the money. Yet another factor in assessing support for those with hearing loss is that peOple who are not well adjusted are less able to accurately perceive or utilize the support available (Wortman, 198A). If psychological maladjustment and denial are as common in the hearing impaired as the literature would indicate, perceived lack of support by the patient may contribute to family conflict. It would appear, then, that family support, particularly emotional closeness, Is usually maintained by the elderly and seen as an Important source of strength. Help that is pertinent to the situation and a united effort by family and friends are also #9 essential. Capitalizing on this source of support and guiding them in the appropriate response might well be an important function of those working with the elderly hearing impaired. Hearing Loss and Social Relationships In light of the Importance of Interpersonal relationships and need to adapt to some of the social changes in aging described above, it is logical that hearing loss could have a tremendous impact on maintaining family relationships. Conversely, the quality of family life should have much to do with a person's ability to adapt to hearing impairment. One can easily think of why social settings are stressful for those with hearing loss, but home can be a source of frustration as well. Given the proportion of time spent at home, there is more opportunity for problems to occur. Also, the person with the hearing loss expects family members to be sympathetic, and when they are not, frustration and anger result. In addition, home is often a noisy place (Hull, 1982). Research studies of family relationships of the hearing Impaired, particularly among the elderly, are glaringly absent even though the importance of including family in counseling and rehabilitation is recognized In text books and opinion articles. Audiologists, too, are aware of the need for increased information and practice In counseling skills (Flahive 5 White, 1981; Riko 5 Alberti, I98A). Frequently the hearing impaired are very sensitive to any negative feelings toward hearing aids or deafness (Neimeyer, 1973; Thomas 8 Herbst, 1980; Tyler et al., 1983). In the study by Thomas 50 and Herbst (1980) #22 of the respondents felt their hearing problem was not understood by others and only #82 felt their spouses understood. Thirty-two percent of the subjects identified negative responses to their hearing problem such as the public treating them badly, and 602 said they tended not to admit their hearing difficulty to others. It Is said that among those developing hearing loss at a later age, the psychological handicap is greater than the social one (Niemeyer, 1973) because they are losing something they once had and enjoyed. (The reverse is true of the prelingually deaf as they struggle to live in a hearing world.) However, because man is a social being, the psychological need to communicate and the urge to socialize are almost identical (Neimeyer, 1973). If thwarted, the consequence is loneliness (Thomas 5 Herbst, 1980). It Is interesting to note that among the prelingually deaf is a strong sense of identity and community with a life-long pattern of socializing in a small cohesive group that seems to offer some protection from the isolation and withdrawal of the general aging population (Becker, 1980). Furthermore, a person rarely spoken to, as in the socially isolated, gradually loses ability to grasp speech (Neimeyer, 1973). This may be especially significant among the elderly because of the sensorineural loss In which speech intelligibility is most affected. Also more likely are central processing problems which interfere with interpretation of language (Riko 8 Alberti, i98h) and the decrease in social network and opportunity to maintain skills. The implication 51 Is to fit hearing aids as soon as possible before this deterioration occurs (Neimeyer, 1973) and while the patient is still motivated to learn (Maruer 5 Rupp, 1979). Several research projects have been designed to study the relationship of hearing loss and social isolation In the elderly. Norris and Cunningham (1981) studied responses of 50 volunteers to questions on frequency of social interaction, number of different social roles, and number of days per month spent in group activities. Independent variables were pure tone and speech discrimination scores at #0 decibels. The only correlations found were Increase In one-to-one interaction with increase in loss at 8000 Hertz and decrease in interaction with increase in loss at 1000 Hertz. The authors concluded that the findings negated each other or could have occurred by chance. In reality, the findings were logical and significant in that a loss at 8000 Hertz is less likely to interfere with speech while 1000 Hertz Is in the midst of the speech range. This seems to indicate the more the loss interferes with speech, the more likely to inhibit Interaction especially in groups. In a study by Weinstein and Ventry (1982) 60 male veterans with presycucic patterns of loss were given audiometric tests as well as the Hearing Measurement Scale (Noble 8 Atherly, 1970), the Subjective Isolation Scale, and the Objective Isolation Scale (the latter two taken from the Comprehensive Assessment and Referral Evaluation). The Subjective Isolation Scale was composed of self-assessment items related to social network, loneliness, inferiority, and interest in leisure activities while the Objective Isolation Scale was designed 52 to elicit Information about number of contacts and involvement in leisure activities. Not surprisingly, the Subjective Isolation Score and results of the Hearing Measurement Scale were most highly correlated (.52) as both measure aspects of self perception and social functioning. The Objective Isolation Scale had a correlation of only .26 with the Hearing Measurement Scale. The authors indicated that because there is no restriction of mobility with hearing loss, Interaction may occur as frequently but just not be as enjoyable. They conclude by stressing the importance of assessing the psychosocial status of the hearing impaired using some type of self-assessment scale. The finding that frequency of social interaction is not affected by hearing loss is supported in the study by Jette and Branch (1985) of 776 survivors of the Massachusetts Health Care Panel Study. There was no correlation of self-rated hearing loss with social disability. The concept of social disability, however, was measured in terms of social opportunity (having someone to talk to daily, spending the day with someone, and seeing a relative or close friend as often as one would like) rather than in terms of satisfaction or quality of the relationship. A study by Oppegard et al. (198A) was conducted to test the hypothesis that social support could serve as a buffer of the effects of sensory loss. Self-ratings of vision and hearing were used to select subjects. Ratings of frequency of contact with relatives was correlated with results of a depression scale and a measure of 53 anxiety. In those with either vision or hearing loss, scores on both the depression and anxiety scales were higher in those who had "low" social support than in those who had indicated more frequent contact. The Impact of hearing loss on social Interaction is rather Interesting if not totally surprising. It would seem that observed patterns of social activity do not change that much but feelings about one's adequacy or another's response to them are a major concern of the hearing Impaired. Attempts to measure these feelings and concerns through self-assessment scales is the topic of the following section. Hearing Handicap Scales As practitioners and researchers in audiology have suggested, audiometric measures of hearing loss do not necessarily reflect degree of psychological and social impact (Alpiner, 1978); Maurer 8 Rupp, 1979; Parving 5 Ostri, 1983; Weinstein 5 Ventry, 1983). Recognition of this situation led to the development of hearing handicap scales. The original purpose of the scales was to detect problem areas and assess progress of rehabilitation efforts (Giolas, I982). Eventually they came to be used in research as well. The early scales tended to assess situation or performance problems such as "can you converse on the telephone”? or "do you have problems with group conversation outside”? Later instruments tended to include more scales about self-perception like, "I feel people avoid me because of my hearing loss" or "my family gets annoyed when I can't hear." 54 Because research related to psychosocial aspects of hearing loss has been done with hearing handicap scales and the major instrument used in this study Is a type of handicap scale, a background of their historical development is presented here. High, et al. (196%) developed the Hearing Handicap Scale which was considered significant for its attempt to measure effect of hearing loss from the patient's perspective. As a I7-Item questionnaire that takes five minutes to administer, it is an easy way to determine problem areas. Because of its good split-half reliability and single outcome score, it has been widely used in research. Problems with the scale are its narrow scope, related mainly to pure tone sensitivity, and lack of internal validity making it difficult to know whether the patient is giving true answers (Giolas, 1982). A broader scale of assessing listening problems in those with sensorineural loss was developed by Noble and Atherly (197D) and is known as the Hearing Measurement Scale. Areas included are speech-hearing, non-speech sounds, localization, reaction to handicap, speech distortion, tinnitus, and personal opinion of loss. It was traditionally administered by personal open-ended interview and taped so it could be evaluated by several clinicians. The #2 Items, which may take up to #0 minutes to administer, might become tedious for the elderly who tire or lose attention easily. Weinstein and Ventry (1983b) feel many items are not relevant to the life style of the older persons and particularly that social and psychological 55 assessment are not complete. Because not all communication situations are covered, it has limited use in designing a rehabilitation program (Giolas, 1982). Two Danish audiologists, Ewertsen and Dirk-Nielsen (1973) developed the Social Hearing Handicap Index (SHI) to assess impact of hearing loss in everyday life. Their intent was to develop a scale that minimized the bias of answering "yes" to every question or randomly checking off answers. The questionnaire consists of 21 items covering communication situations involving one person in quiet and noise, group conversation, and understanding television, radio, and telephone; the directions require the subject to write in "yes” or "no." In 902 of the cases scores on the SHI correlated with SRT scores, leading the authors to conclude that administering a handicap scale was particularly important in discovering the 102 who had greater handicaps than one might deduce from audiometric scores. It might be noted that “social" in the scale referred to interpersonal communication situations rather than feelings such as self-consciousness about functioning in groups. Alpiner's (197%) Denver Scale of Communication Function is an attempt to measure personal reaction to hearing problems rather than performance. It is divided into areas of family, self, social-vocational, and communication. It is scored as a profile showing strengths and weaknesses. It is a IS-mlnute perception type questionnaire consisting of 25 Items. For seniors there may be too many choices with seven stages from "agree" to "disagree." Also, the double negative wording of some of the statements could be confusing 56 to the elderly. There is a space for "comments" but while useful for conducting a rehabilitation program the extra Information is difficult to quantify for research purposes. This tool seems to be a good overall method of assessing programs in audiological rehabilitation by comparing "before" and ”after" profiles of the same patient, but it is not too helpful in gathering information on psychological impact or family influence as only four statements relate to family and five to self-concept. Alpiner (1978) himself recommends it be given with Sanders' (1975) scale of performance. The Sanders (1975) instrument is really a set of scales, any one of which can be selected for a specific listening situation. One sample is the Profile Questionnaire for Rating Communication Performance in a Home Environment. This scale consists of nine two-part questions, the first directing the respondent to rate degree of hearing difficulty In a stated situation and the second part asking him or her to indicate how often that particular circumstance occurs. There are other forms for social and occupational environments. This type of tool may be particularly helpful in assessing priority of situational problems. In 1979 Giolas, Owens, Lamb, and Schubert developed the Hearing Performance Inventory to assess situational problems and action to remedy them. It is certainly important for the rehabilitation audiologist to know the patient's pattern of handling hearing difficulties, but this scale, too, does not provide adequate information about psychological aspects and family relationships. 57 Only eight items deal with family. The length of this scale might also pose a problem for seniors; there are 75 items excluding the occupational category. Hutton's (1980) Hearing Problem Inventory is a 51-item check-off questionnaire designed to elicit responses mainly In areas of hearing performance and use and care of a hearing aid, but it does contain eight questions on psychosocial impact. This tool was specifically designed to assess the impact of hearing aid use on performance and adjustment to hearing loss and for this reason, as well as its more recent development, it has had more limited use than some of the earlier scales. In an attempt to cross check the perceptions of others with those of the hearing impaired elderly, Schow and Nerbonne (1976) developed the Self and Staff Nursing Home Hearing Handicap Index. It basically consisted of a correlation of pure tone averages with both the patient's and staff member's assessment of patient's hearing handicap. Interestingly, the staff assessment correlated more highly with the pure tone average than did the patient's own assessment. The authors note the implication of the staff being more objective. Rather than supporting validity of the tool, these results may serve to highlight the differences in perception In those who actually have the disability versus those who must deal with it in others. In 1982 Schow and Nerbonne published a lO-item Communication Screening Profile with comparable forms for the patient and a significant other. These authors advocate use of such an instrument as part of the basic evaluation battery and find it especially useful 58 in determining handicapping effects of hearing loss in cases where the patient is unaware of the hearing loss or tries to minimize It. This screening tool was designed to address the most important issues, yet be simple to administer and score. While useful for general screening, it would not be appropriate for this type of project as the first six questions are situational and only four items deal with feelings about hearing loss or relationships to others. More recently, Ventry and Weinstein (1982) developed a tool specifically to assess emotional, social, and situational impact of hearing loss on the elderly. Twenty-five questions with possible answers of "yes," "sometimes," and "no" are administered in a ten-minute personal interview. In the initial testing on 100 New York City elderly, ages 65 to 92, there was a wide standard deviation (27.3 for the total scale) indicating the great variability of perceived handicap. Reliability was measured and established with internal consistency at .88-.95 and split half reliability at .9A-.95. However, validity was not statistically measured; the authors discussed at length support for construct and content validity. Hearing handicap scales were initially developed to elicit patients' opinion of handicapping effect in various listening situations. Over the years, self-ratings of psychological Impact were added with intent to gather information to use in comparing progress after hearing aid fitting or other forms of audiological rehabilitation or as a basis for counseling. Scales differ in types S9 of questions, administrative techniques, time involved, and interpretation. As it stands now, one chooses scales that seem to best fit the situation one wishes to measure. McCarthy-Alpiner Scale of HearihgiHandicap McCarthy (1979) in her doctoral dissertation directed her efforts toward developing a better hearing handicap scale that specifically measured reactions and feelings rather than problems in various communication situations. Because it was a new instrument, she made considerable effort to attempt to establish reliability and validity. After developing her 100-item questionnaire based on "clinical and rehabilitation experience,” McCarthy experimented with normal hearing and hearing impaired subjects to establish optimal recall time. To determine test-retest reliability, she calculated Pearson product-moment correlations, and to evaluate internal consistency, she computed Chronbach's alpha for psychological, social, and vocational items, retaining only the 3A statements with coefficients of .8 or better for the respective traits. In addition, sample size for the formal study was determined by statistical analysis. In the formal study 60 subjects and family members participated by simultaneously filling out comparable forms of the questionnaire in a clinical setting. Subjects included 58 males and two females, ages 21 to 50, who had experienced bilateral sensorineural hearing loss. The family member was required to be sharing the same household as the subject. 60 McCarthy (1979) employed a complex statistical formula designed to simultaneously assess reliability and validity of information related to several traits (psychological, social, and vocational) gathered by several methods (subject scores and family member scores). This procedure supported validity for the psychological trait but not for the social or vocational. Because higher correlations were found among psychological, social, and vocational traits by the same method rather than higher correlations for a specific trait by both methods, the author questioned her methods factors (e.g. test form, item wording, item order) because of indications made by developers of this particular statistical method. Reliability using this same multitrait-multimethod statistical procedure is Indicated by correlations of same trait by same method (e.g. psychological scores of subjects only). This correlation statistic remained high for all three traits, .78 to .86, supporting the high reliability Initially determined by internal consistency and test-retest methods. In comparing subject and family member answers, McCarthy found eight of ten items representing the psychological trait had coefficients of .32 or greater; among the fourteen social items only five had correaltion coefficients above .30. Similarly, only five of ten vocational items had coefficients higher than .30. Age as a partialed out factor did not show a significant change in correlation of subject and family member scores nor did use of hearing aid or degree of hearing loss. 61 McCarthy, In her discussion, raised the question of interpretation differences, i.e. the family member's "sometimes" may be the patient's "usually." Even in a test-restest situation with the same person, what is the difference between a "usually" and a "sometimes" response? If this is the case, five response choices may be asking for a finder distinction than is realistic to achieve. It may be more appropriate to use ”yes," ”sometimes" and ”no." The dissertation author also comments on getting better correlation on items worded in the negative, stating that patients and families may have more nearly similar interpretations if a stated problem is real to them. In order to use the statistical procedures described, the methods should be independent, and the author realizes this may not have been true. Rather than pursue the issue of "how independent," it is proposed that logically one would expect differences in perception between subject and family member as having a handicap and dealing with It in others is not the same although some issues may overlap. Rather, one might capitalize on these differences to examine areas of discrepancy to better understand both patient and family concerns. This use of the instrument is also recognized by the author in her conclusion. The original purpose of the research was to develop a reliable and valid measure of psychological and behavioral impact of hearing loss with no specific intent to develop a patient/family assessment tool. Since that time the possibility of this use has been recognized and comparable forms of the questionnaire are available (Alpiner, 1982). In fact, the only published article based 62 on the dissertation has been related to its use as a tool in family counseling (McCarthy 8 Alpiner, 1983). At present, two research projects are being conducted using the McCarthy-Alpiner Scale of Hearing Handicap, but results are not yet published (P.A. McCarthy, personal communication, May 13, 1985). While weaknesses of this tool may be the Inability to establish statistical validity, its recent development and thus limited use in research, and lack of established standardization in the elderly, the positive aspects are the stringent statistical procedures used to establish reliability, comparable forms of patient and family member questionnaire, and emphasis on psychological and behavioral impact of hearing loss without extraneous situational questions. Therefore, the McCarthy-Alpiner Scale of Hearing Handicap was selected as the basic Instrument for this research project. It is hoped that findings will contribute to the literature in the area of patient and family member perceptions of impact of hearing loss in the elderly as well as further testing the value and practicality of this tool. Use of Hearing Handicap Scales Research literature related to hearing handicap scales generally falls into the categories of testing instruments and evaluating clinical interventions. Because new scales are constantly being developed, much of the research has focused on comparison of scales to audiometric test results such as the Weinstein and Ventry (1983b) study comparing Hearing Measurement Scale with pure tone average and 63 speech discrimination. In other studies the focus has been on comparison of one hearing handicap scale with another (Schow 8 Nerbonne, 1980). In a clinical setting, Tannahill (1979) assessed speech reception threshold, speech discrimination and Hearing Handicap Scale (High, et al., 196A) scores before hearing aid fitting and four weeks later. While there was general improvement in all three measures, the HHS scores revealed a wide range of change (-102 to +82.52) Indicating the personal variation in perception of hearing handicap and hearing aid benefit. Brook (1979), in a British study, used the Social Hearing Handicap Index (Ewertson 8 Birk-Nielson, 1973) along with measurements of consistency of hearing aid use and ability to handle the instrument to assess degree of change before and after home counseling sessions by volunteers over a six to twelve week period. Handicap scale scores were ten points more improved among the experimental group. While hearing handicap scales have been useful in verifying the perceptual differences among those with similar degrees of audiometric findings, they will no doubt need to be further studied and refined. It is also necessary that they be standardized on elderly who for various reasons, such as effects of multiple disease conditions, problems with comprehension, or just fatigue with use of longer forms (Darbyshire, 198A), may not test accurately with present Instruments. No doubt revised forms and questionnaires will be available in the near future for this population. 6h Hearipg Loss in Nursing Literature In spite of the prevalence of hearing loss among the ever increasing elderly population and the impact of this handicap on life-style, there is little emphasis on this problem in nursing literature and virtually no research, with the exception of a study by Neidringhaus (I981) assessing fluctuations in pure tone average with time of day in a group of institutionalized elderly and one by Magilvy (1985) who studied quality of life in older women with early onset and late onset hearing loss. Interestingly, the latter author found that social hearing handicap (measured by the Hearing Handicap Inventory for the Elderly) along with functional social support and perceived health status were the best predictors of life satisfaction. Articles appearing in popular nursing periodicals usually are focused on how to improve communication with the hearing impaired (Farrel, 1979; Holm, 1978; Campbell, 198%). Most of the psychosocial research related to hearing loss has been done by audiologists although some have included nurses in the studies. Schow and Nerbonne (1979) used nurses to rate degree of handicap and compare it to patients' perceptions In a nursing home population. In an assessment of perceptions about deafness, Darbyshire and Kraus (1983) compared responses of nurses with those of the general population, and while both groups were more positive than negative, nurses showed no greater understanding of the impact of hearing loss than did the general population. The authors interpret this as a need for greater education among nurses. One flaw in the tool, however, is that statements are written in such 65 stereotyped terms that they beg to be refuted lest one sound prejudiced, and there is no statement that the instrument is designed to assess understanding rather than attitude. It might be added that in recent years basic nursing texts have greatly improved the content on hearing impairment and its treatment. However, content of medical-surgical texts is quite variable. 'Some (Brunner 8 Suddarth, 198A; Jones, Dunbar, 8 Jirovic, I982; Luckmann 8 Sorensen, 1980; Phipps, Long, 8 Woods, 1983) provide extensive information on types of hearing loss, physical and audiometric testing, care of hearing aids, and strategies to improve communication. Several books (Beyers 8 Dudas, l98h; Lewis 8 Collier, 1983) contain a moderate amount of Information, mainly related to physical and audiometric examination and communication techniques. Another text (Beland 8 Passos, 1981) contained no mention of hearing loss except to note that it occurred in the elderly. Several major critiques of these texts are: 1) having to look in as many as four different sections of the book to compile information on hearing loss (Jones, et al., 1982); 2) finding little distinction between deafness and hearing Impairment (Luckmann 8 Sorensen, 1980), particularly regarding psychosocial impact (Beyers 8 Dudas, 198A); 3) noting very little discussion devoted to hearing loss in the elderly (Brunner 8 Suddarth, 1984) except for the definition of presbycusis (Beyers 8 Dudas, 198A; Jones, et al., 1982; Phipps et al., 1983); A) finding misleading information about hearing aids, particularly about cost, differences in types (Jones, et al., 1982), and batteries (Lewis 8 Collier, 1983); 5) seeing overly pessimistic attitudes about 66 the use of hearing aids in sensorineural loss (Beyers 8 Dudas, 198k; Luckmann 8 Sorensen, 1980); and 6) noting an occasional, totally incorrect statement such as a wide air-bone gap indicating a sensorineural loss (Brunner 8 Suddarth, i98h). While there seems to be more information available to current nursing students, there is still room for improvement. More importantly, there need to be more articles in nursing journals to provide updated information to nurses already practicing who did not have the advantage of audiological information in their textbooks or who, after facing specific clinical problems, feel the need for such knowledge. Summary it has long been recognized that hearing loss is not the same as hearing handicap and that perception of psychosocial impact is not consistent from one person to another. This may be particularly true of the elderly as they suffer more physical disease and life-style changes that stress interpersonal relationships. While there have been numerous attempts to develop accurate scales to measure hearing handicap with some improvement in content, validity, and practicality, it is apparent that no single scale is useful for all purposes and with all age groups. Hopefully, with further testing of scales and suggestions for improvement, there will become a useful set of tools from which to choose. The historical perspective on the development of such tools was presented in this chapter. The 67 methodology used to study the perceptions of the psychosocial impact of hearing loss on the elderly using the McCarthy-Alpiner Scale of Hearing Handicap is presented in Chapter IV. CHAPTER IV METHODOLOGY introduction The study design for examining the perceptions of psychological and social effects of hearing loss on the elderly from the perspective of both the patient and family member is the topic of this chapter. Included in this section are: i) a description of the research design; 2) a listing of operational definitions; 3) an explanation of instruments used; h) the criteria for selection of subjects; and 5) the procedures for data analysis. Research Design and Questions 223192 This descriptive study was designed to analyze data collected by questionnaire to identify the psychosocial impact of hearing loss on the elderly, to identify the perceptions of a close family member, and to compare areas of similarities and differences. Pertinent demographic data and specific types of health related information were also gathered in the survey questionnaire (see Appendix G) in order to categorize findings by socioeconomic factors, extent and duration of hearing loss, perception of overall health status, and frequency of social interaction. Research Questions The basic research questions and subsets of questions are listed as follows: 69 i) What are the hearing impaired elderly patient's 2) 3) perceptions of the psychosocial effects of hearing loss? a) What problems are most and least frequently reported by patients? b) What impact does degree of hearing loss (pure tone averageIIPTA], speech reception threshold [SRT], and 1 speech discrimination [50]) have on psychosocial handicap? c) is there a difference in perceived handicap in those who report higher or lower levels of social activity? What are the family member's perceptions of the psychosocial effects of hearing loss on their hearing impaired elderly relative? a) What problems are most and least frequently reported by family members? b) How does degree of hearing loss (PTA, SRT, and SD) relate to psychosocial problems reported by family members? c) How does level of social interaction relate to psychosocial problems reported by family members? What are the areas of discrepancy between the patient and family member on the psychosocial effects of hearing loss? a) b) e) 70 Which problems do patient and family member most consistently report as similar and which problems are most often seen differently? What impact does severity of hearing loss have on discrepancies in perceived handicap? What impact do high and low levels of social ' interaction have on discrepancies in perceived handicap? Other questions based on sociodemographic information and perceived health status were included to help categorize additional factors that may affect the impact of hearing loss in the elderly. These include: a) b) C) d) e) Are there relationships between sociodemographic (age, sex, living situation) characteristics and perceived psychosocial impact of hearing loss? How do sociodemographic factors (age, sex, living situation) relate to differences in psychosocial problems reported by the patient and family member? How does the patient's overall perception of health status affect reported problems? How does the patient's overall perception of health status relate to psychosocial problems reported by the family member? Are there differences in types of psychosocial problems reported by spouses and adult children of the hearing impaired elderly? 71 Operational Definitions in order to delineate specific parameters of this study, the conceptual definitions identified in Chapter i are further developed as operational definitions listed here: ELDERLY--men and women over age 60 residing independently in the community, (i.e., non-institutionalized). They may be under treatment for other health care conditions, but do not have diagnoses implying cognitive or psychiatric disorders. HEARING LOSS--auditory impairment that is sensorineural (or mixed with sensorineural as the main component) that has been verified by a certified audiologist (or student working under the supervision of a certified audiologist) and classified into the following categories: DEGREE OF LOSS PURE TONE AVERAGE* SPEECH RECEPTION THRESHOLO+ Mild 30-h5 dB HL 30-45 dB ML Moderate 50-65 dB HL 50-65 dB HL Severe 70-80 dB HL 70-80 dB HL *Average of hearing loss for pure tones at 500, 1000, and 2000 Hertz reported in decibels. +intensity at which patient can repeat 502 of two-syllable (Spondee) words reported in decibels. 72 IMPAIRMENT OF CLARITY SPEECH DISCRIMINATION* Mild 80-1002 Moderate 52- 762 Severe 0- h8z *Measure of ability to repeat one-syllable words reported in percentage of correct responses. Those not fitting the simultaneous classifications above were excluded from the study. FAMILY MEMBER--spouse or adult child (over age 21) or significant other who maintains at least monthly contact. This person must be free of apparent cognitive or psychiatric disorder and be willing to participate in the study. ADAPTATION--the process of responding to the situational problem of hearing loss and attempting to improve reception of auditory stimuli and communication. PERCEPTION--the patient's or family's subjective, personal and selective interpretation of environmental stimuli that relate to impact of hearing loss. PSYCHOSOCIAL EFFECT--impact of hearing loss on attitude toward self and feelings about the quality of relationships with other people, as measured by the H-A Scale of Hearing Handicap. M-A SCALE--(The McCarthy-Alpiner Scale of Hearing Handicap) Bh-ltem Likert type questionnaire designed to assess the perception of the impact of hearing loss on attitudes and behavior. Form A has 73 been developed for the patient and Form B for the family member. For this study the last ten items were deleted as they pertained to the work situation (see Appendix E). Use of instruments in this study four sources of information about the patient and his or her problem of hearing loss were utilized: 1) comparable forms of the H-A Scale of Hearing Handicap completed by the primary subject and a family member; 2) questionnaires eliciting information about sociodemographic characteristics, general health and hearing loss completed by the primary subject; 3) information about the perception of hearing loss and frequency of contact obtained from a family member; and h) measures of hearing loss gathered from records obtained by a clinically competent audiologist certified by the American Speech-Language-Hearing Association or a graduate student being supervised by a certified audiologist. instruments used with the patients and family members were all written questionnaires rather than personal Interviews. This method was chosen for several reasons: 1) the reluctance of people with severe hearing impairment to expend effort answering verbal questions (Herbst 8 Humphrey, 1980); 2) the convenience of allowing the patient and family member to complete the information on their own time schedule; and 3) the added anonymity of not asking personal questions in a face-to-face encounter. 7h H-A Scale The 3k-Item M-A Scale (McCarthy-Alpiner Scale of Hearing Handicap, 1980) was developed by the collaborative work of Dr. Jerome Alpiner and Dr. Patricia McCarthy at the University of Denver as the doctoral dissertation completed by the latter author in 1979. (See original form of scale in Appendix E.) The purpose of the research was to develop an instrument that validly and reliably measured the perceptions of the psychological, social and vocational impact of hearing loss. While validity could not be established according to the heterotrait-heteromethod statistical procedure used, probably because of the assumption that the patient and family member would answer the questions in the same manner (see Chapter ill for full critique of the instrument), the scale was established as reliable for the original study. The instrument consists of statements with a five-point Likert-type response format of a patient's or family member's perceptions of the attitudes and behaviors of an elderly person's psychological, social, and vocational response to hearing loss. The first ten questions are related to psychological function, the next 10 to social reaction, and the last ten to vocational impact. Some are worded in the negative and some in the positive mode. Examples of questions are: 1) He/She feels negative about life In general because of his/her hearing loss. (Psychological) 2) He/She asks a person to repeat if he/she does not understand what is said. (Social) 7S 3) His/Her co-workers speak loudly and clearly. (Vocational) Statements are weighted so that the maximum degree of handicap is accorded five points, and the higher the overall score the more psychosocially handicapped a person is by the hearing loss. The response options for all items are labelled as "always," "usually," "sometimes," "rarely," or "never." Because this study was conducted with people over the age of 60, most of whom are retired, the ten questions pertaining to perception of vocational function were eliminated. The word "Strangers" in question 1% was changed to "Family" because it is that relationship that is the major concern of this study. Reliability and Validity of H-A Scale Reliability refers to the consistency with which an instrument measures an attribute that it is supposed to measure, barring a change in the instrument or subject (Polit 8 Hungler, 1983). The original administration of the H-A Scale was assessed for stability using test-retest reliability in a pilot study of 100 hearing impaired subjects (McCarthy, 1979). Recall at two weeks was 7-172 and that was considered acceptable in eliminating confounding due to memory of items and potential intervening variables. Only items with an r of >.8 were included in the final form of the instrument. Chronbach's alpha statistic is a means of assessing internal consistency, the extent to which questions measure the same characteristic (Polit 8 Hungler, 1983). Considering psychological, 76 social and vocational functions to be independently related to hearing loss, McCarthy calculated separate alphas for each of these subscales. The obtained alphas, from a small pilot study group, were .83 for the psychological scale, .86 for the social, and .81 for the vocational (McCarthy, 1979). Validity is an indication of the degree to which an instrument measures what it is designed to measure (Polit 8 Hungler, 1983). As with reliability there are several methods of establishing validity. McCarthy (1979), in the original work, attempted to establish criterion validity by comparing patient perceptions of psychological, social, and vocational impact of hearing loss with that of a family member's perception. The contention and major assumption of this thesis is that the patient and family member may have different opinions and that using that comparison for criterion validity was a poor choice. Content validity of the scale is supported by a review of the literature. Concerns about group conversation (Maurer 8 Rupp, 1979; Alpiner, 1982), self-concept (Neimeyer, 1973), family relationships (Thomas 8 Herbst, 1980; Oppegard et al., 198“), and social activity (Norris 8 Cunningham, 1980) have all been documented by research or practical experience. Sociodemographic and Health information PatientAQuestionnaire Basic sociodemographic information, such as age, sex, race, living situation, etc., was collected in order to characterize the 77 obtained sample and explore possible response differences among subjects. in addition, several questions pertaining to hearing loss such as whether one wears a hearing aid and duration of its use and general satisfaction with the aid were included as these factors could greatly influence perception of hearing handicap. it was suggested by a certified audiologist that duration of hearing aid use be divided into: 1) less than six months (as an adjustment period); 2) six months to one year (as a time of establishing continued use); 3) one to three years (as a time of well established use or disuse); and h) more than three years (as an indication of whether the client has likely purchased a second instrument--the average life of a hearing aid purchased several years ago being about three years). The question about primary language was included because it has been demonstrated that people who converse in a secondary language even if it was learned at an early age seem to have more difficulty with speech reception in the presence of hearing loss (Butler, 1983). Also included were several questions about general health. Dne item was an overall rating of perceived health status, which has been found to be highly correlated with objective ratings of health (Maddox 8 Douglass, 1973). Perception of personal health is also seen to be a major factor in adaptation to chronic illness (Miller, 1983) and to impact of and rehabilitation in hearing impairment (Alpiner, 1982; Herbst, 1980) as well as being highly related to life satisfaction (Edwards 8 Klemmack, 1973). 78 The listing of chronic diseases was included to aid in consideration of factors that may contribute to problems with adaptation to hearing loss or use of a hearing aid, such as arthritis causing difficulty in manipulating controls on the instrument. Other diseases such as COPD may require so much time and effort to control that little energy is left over to concentrate on speakers or pursue hearing rehabilitation (Alpiner, 1982). The information requested on social activity, perceived influence of hearing loss on socialization, and general satisfaction with a hearing aid were included because a higher level of actual or desired activity may influence the perceived impact of communication problems. A person who prefers to stay at home and read or work on a coin collection may not feel the impact of hearing loss as greatly as a person who likes to attend concerts and meetings. Family Member Questionnaire Completion of a short (five-item) questionnaire was requested of family members to compare perceptions of the duration and degree of hearing loss and to establish the frequency of face-to-face and telephone contact (see Appendix H). Audiological Information The audiometric data was taken from patient records at private audiology clinics as completed and recorded within the past two years by a certified audiologist, or graduate student supervised by a certified audiologist. Although the exact degree of documented 79 hearing loss does not imply a corresponding level of psychosocial handicap, those with mild loss versus severe loss may likely have different perceptions of problems. Because the ability to understand speech may or may not be associated with degree of pure tone loss, three types of audiometric information--pure tone average (PTA), speech reception threshold (SRT), and speech discrimination (SD)-- were used to classify subjects in this study. Pure tone loss, the inability to hear high and low pitched tones at various degrees of loudness was divided into the following categories of mild, moderate, and severe. Mild hearing loss was considered to be a 30-AS decibel pure tone average (PTA) loss in each ear. Criteria for moderate loss was a 50-65 decibel PTA and for severe loss a 70-90 decibel PTA in each ear. The Speech Reception Threshold (SRT) is an assessment of the intensity (loudness) at which the patient can repeat 50% of the two syllable words presented to him or her. Results of this test were also partialed out into mild, moderate, and severe difficulty according to the following criteria: Mild--30-h5 decibel HTL Moderate--50-65 decibel HTL Severe--70-90 decibel HTL Speech discrimination (SD) testing is a method of objectively rating ability to hear speech; in other words it is a measure of verbal clarity and is sometimes measured in both quiet and noisy conditions. This is important to establish for presbycucic individuals because they may experience "phonemic regression“ in 80 which speech is perceived as garbled because of the mix of high and low frequency phonemes. They may be able to hear words or sentences but not interpret them because neural damage is likely to result in problems with perception and transmission of the message rather than conduction of a sound, which is measured with pure tone testing (Maurer 8 Rupp, 1979). Classification of ability to correctly interpret Speech discrimination word lists was as follows: Good--80-1002* Fair--52-762 Poor--0-h82 *Results of 76-802 and h8-522 are not possible because of scoring method. Because all three types of measures described above are important in classifying hearing loss in those with a sensorineural disorder, it was decided that patients be classified into degree of hearing loss categories using all three measures simultaneously: DEGREE OF LOSS PURE TONE AVERAGE SRT Mild 30-85 decibel HTL 30-45 decibel HTL Moderate 50-65 decibel HTL 50-65 decibel HTL Severe 70-80 decibel HTL 70-80 decibel HTL lMPAIRMENT OF CLARITY SD Mild 80-1002 Moderate 52- 762 Severe 0- #82 81 While this classification eliminated some people from the study because their audiometric results did not fall within the specific categories (or their PTA, SRT, and 50 did not fall within the same category), it was felt that those included would be more accurately classified and interpretation of results would be more meaningful because degree of hearing loss and extent of communicative disorder would be more definitely established. Sample Participants The target population of this study were elderly people 60 years of age and older who had received services at an audiological testing center/clinic for hearing evaluation, possible hearing aid fitting, and follow-up. The study participants were a convenience sample of A8 older patients who were being served by private audiology clinics and had met the following criteria: 1) Were willing to participate in the study 2) Were free of apparent mental impairment that would interfere with ability to complete a written questionnaire or give informed consent 3) Had a spouse or adult child also willing to participate in the study A) Had a hearing loss (PTA, SRT, and SD) verified by a certified audiologist 5) Were able to read and write English 82 Family Members Similar criteria were required of family members: 1) Were willing to participate in the study 2) Were free of apparent mental impairment that would interfere with ability to complete questionnaires or give informed consent 3) Were able to read and write English A) Had a telephone for communication with subject and researcher Because this was a voluntary sample of a small group of subjects who were willing to seek help for hearing loss and had a relative nearby, this may imply some bias related to socioeconomic level, motivation, and level of social support. Thus, findings have limited generalizibility to a similar population. Data Collection Sites Four sites were utilized in obtaining subjects for this study, and the data collection procedure was the same for each one. All the clinics were located in a mid-sized industrial city which would account for the higher than average percentage of patients with noise induced hearing loss reported by audiologists at all the sites. Site 1 Twelve patients were referred by a private hearing and speech center certified by the State of Michigan. The clinic is staffed by two full-time certified audiologists and one part-time certified 83 speech pathologist. The number of clients seen in this clinic is about 500 per month with about 302 over the age of 60. Approximately 802 of the clients are referred by physicians and 202 are ”walk-ins." Although the primary function of this clinic is diagnostic audiology, the audiologists also meet the rehabilitative needs of their patients through evaluation, selection, and fitting of hearing aids. Patients fitted for hearing aids are given a one-hour structured orientation and are recommended to come in for follow-up at two weeks, six months, 11 months, and after that at six month to one year intervals. Site ii A second site was a speech and hearing clinic operated by a large university. Thirty-two participants were obtained from this site which employs three full-time certified audiologists to supervise 12 to 28 graduate students per term and provide service to approximately #00 patients per month. it is estimated that about 602 of the clients are over age 60. Approximately half are referred directly from physicians and the other half include "walk-ins" and those referred by friends and other health care providers. A wide-range of audiological services are offered including extensive hearing testing, hearing aid evaluation and fitting, and other rehabilitation measures, such as family counseling, as needed by a particular patient. follow-up after hearing aid fitting is 8% continued every two weeks until the client feels comfortable in managing the device, and routine re-evaluation is recommended on a yearly basis. Site Iil Three subjects were referred by the private office of three otolaryngology physicians who employ two certified audiologists in their practice. Most audiology patients are, of course, referred by these physicians but there are some outside referrals as well. About 30 to #02 of the 350 patients the audiologists see each month are over the age of 60. Services provided are similar to those of the other clinics, mainly hearing testing, hearing aid fitting and orientation, and re-evaluation at regular intervals. Special procedures such as audiologic brainstem response testing and electronystagmograms are also conducted at this site. Site iV Only one patient was obtained from an audiology department operating within a 502-bed hospital. One full-time audiologist is employed to evaluate hearing and recommend and provide the necessary follow-up. About 250 patients are seen monthly with about 302 over the age of 60. Because of his involvement with cleft palate and developmental assessment clinics, the audiologist does not spend a great proportion of his time with the elderly. However, he is available to evaluate 85 and recommend treatment for hospital inpatients on referral of other health providers. Approval and written permission to contact patients served at each of the sites was obtained from the clinic supervisors and copies of the signed forms are found in Appendix C. Data Collection Procedure The initial contact with the subjects was made by the audiologist asking patients who met the criteria if they would like to participate in the study. it was explained that the study involved filling out an objective questionnaire taking about 30 minutes to complete and that confidentiality would be maintained. it was also stated that expression of interest would not be construed as an obligation to participate in the study, but that those who were interested would be contacted by telephone (or alternately by letter if the subject had uncompensated hearing loss) to be given a more detailed explanation of the research project and to obtain verbal permission to send out the questionnaire. During the telephone contact an explanation was given about the consent form being enclosed with the research material, specifically: i) that participation was voluntary; 2) that the person was free to withdraw from the study at any time; 3) that confidentiality would be maintained; A) that permission was given to use audiometric results from the clinic; and S) that a decision to participate or not in no way compromised further treatment for hearing loss at the audiology clinic. (See sample consent form in Appendix F.) 86 if the family member shared the same household with the patient, the researcher spoke to them and explained the project during the same telephone contact. if the family member designated by the patient lived at another address, the telephone number was obtained and a separate contact made. A separate cover letter and consent form were enclosed in the packet for the family member who shared living quarters with the patient. A totally separate packet was sent out to family members in different households for their convenience and promptness in returning the material (see Appendix H). As indicated earlier, packets were sent by mail with a cover letter explaining the project and general directions, appealing for cooperation, and requesting the participant to return it within ten days. A stamped, self-addressed envelope was included for participants' convenience in returning the information. If not returned in ten days, a follow-up phone call was made to encourage completion and return of the questionnaire. Protection of Human Rights Confidentiality was maintained by converting questionnaire answers to a code sheet and performing analysis by computer. Any publication of results will be done in group form. Consent forms were filed separately to be used only if there should be a question of verification of consent or as a method of retrieving coded data should a participant later wish to withdraw from the study. A separate consent form was obtained from family members who participated. Because the research was conducted by self-report 87 questionnaire and participants were never personally met by the investigator, anonymity was further insured. Approval of proposed methods to protect the rights and welfare of human subjects was obtained from the University Committee on Research involving Human Subjects on December A, 198A (see Appendix 0). Pilot Study A pilot study was conducted on five pairs of subjects, two husband-wife couples, one sister-sister pair, one mother-son pair, and one mother-duaghter team. Although some remarked that they had to concentrate on the negatively worded items on the M-A Scale and that some items didn't seem applicable to their particular situation, all indicated they were able to understand and answer the questions. The only comment that arose consistently on the personal questionnaires was the one in the family member's packet regarding frequency of telephone contact. The original set of responses in Question 5 had no place to indicate "no phone contact" and the reason. Options were added to include: "None--no phone"; "Hone--live in same household”; and "None--relative can't hear to use phone." Analysis of Data The statistical analysis relates to four types of information: 1) an attempt to replicate reliability of the M-A Scale; 2) a description of sociodemographic factors; 3) analysis of M-A Scale 88 findings and differences between patient and family member responses; and A) correlation of selected sociodemographic factors with levels of hearing impairment. Because the M-A Scale was recently developed and not widely used in research, attempts were made to replicate the original scale findings by calculating Chronbach's alpha for the two subscales (psychological and sociological) and comparing them to McCarthy's original findings. Basic descriptive statistics were used to classify sociodemographic information. Findings are reported in tables of relative frequencies and percentages. To establish whether there were overall differences in psychological and social perceptions, t-tests were used to evaluate the level difference between subjects' and family members' responses for the two subscales. Response differences for individual questions were also compared to determine which psychosocial problems were likely to be viewed discrepantly. Analysis of variance was calculated to determine whether there were differences between groups with different levels of age and social activity. Correlations and t-tests were also performed to determine relationships between selected variables. Summary A discussion of methodology was presented in Chapter IV. Major topics of the chapter included research design and questions, sample criteria, data collection sites, data collection procedures, 89 protection of human rights, and statistical analyses. in Chapter V results of statistical analyses are presented. The main sections of that chapter include the descriptive data related to sociodemographic characteristics, correlations and t-tests to determine similarities and differences in patient and family member responses, and test statistics pertaining to the reliability and validity of the instrument. CHAPTER V DATA ANALYSIS introduction in this chapter results of statistical analyses are presented, including descriptive information on the sample's sociodemographic characteristics, health status and level of hearing loss as well as analyses related to the McCarthy-Alpiner Scale of Hearing Handicap and findings related to the research questions. Descriptive Classifications Sociodemographic Characteristics The sample for this study included 22 males and 26 females referred by audiologists from four clinics in an urban midwestern city. The patients, however, lived in various areas of central Michigan. Rural areas and small towns were represented among the sample as well as the metropolitan center. Age of the sample ranged from 61 to 90 years, with A3.72 of the respondents between the ages of 70 and 79 (see Table 1). Table 1: Age Distribution of Subjects Age Range N Percentage 60 - 69 15 31.2 70 - 79 21 A3.7 80 - 89 11 22.9 90 i 2.1 TOTAL A8 100.0 91 More than half, 29 (60.A2) of the people were married and living with their spouses. Thirteen (27.12) of the respondents were widowed, four (8.32) had never been married, and two (A.22) were divorced. Fifteen (31.3%) were living alone and one (2.1%) each was living with an adult child, a sibling, or "other." There was also one "no answer” in this category. Socioeconomic status is reflected in Table 2, which is a listing of education, income, and occupation (or former occupation). Table 2: Socioeconomic Status of Subjects Education N. Percentage College Graduate 13 27.1 Some College 9 18.6 High School Graduate 11 22.9 Some High School 7 1A.6 Grade School 5 10.A Less than 8th Grade 3 6.3 No answer _Q __:;_ TOTAL A8 100.0 92 lgggmgf N. Percentage Less than $ 5,000 2 A.2 $ 5,000 - $15,000 15 31.3 $15,000 - $25,000 17 35.A $25,000 - $35,000 2 4.2 $35,000 - $A5,000 6 12.5 Over $A5,000 i 2.1 No Answer _§ _12;A TOTAL A8 100.0 *household income per year Occupation** !_ Percentage Professional 13 , 27.1 Managerial/Business 6 12.5 Clerical A 8.3 Skilled Labor 9 18.8 Unskilled Labor/Housewife 1A 29.2 No answer _; __A;2 TOTAL A8 100.0 **(or former occupation) Forty (83.32) of the A8 respondents listed their present occupational status as "Retired." Only three (6.32) were employed full-time and two (A.22) part-time. Eleven (22.92) indicated that they were involved in volunteer work, two (A.22) listed "other" 93 (occupational status) without a specific description, and there was one "No Answer." Totals are more than A8 because respondents could check more than one answer. Health Status The self-perceived health status of this study sample is listed in Table 3, indicating that 72.9% (N - 35) considered their health to be at least "average" and only 252 (N - 12) felt their health was "poor." No one listed their health status as "very poor." Table 3: Self-Rated Health Status of Subjects Health Status ‘N Percentage Very Good 7 1A.6 Good 1A 29.2 Average 1A 29.2 Poor 12 25.0 No Answer _1 __2;l TOTAL A8 100.0 To obtain further information on the health status of the subjects, items related to chronic illnesses, use of prescription medications, and use of over-the-counter (OTC) drugs were included in the questionnaire. The item related to chronic illnesses offered the option of listing up to five diseases. Results of the tabulation are listed in Table A. One person listed five chronic illnesses, seven people 9A listed four, eight listed three diseases, eleven listed two conditions, and 1A had only one chronic disease. Seven participants indicated that they had no chronic illnesses. Table A: incidence of Chronic Illnesses Among Subjects Illness ! Arthritis 20 Hypertension 18 Heart Disease 1A Eye Conditions 1A Diabetes 6 Stroke 3 Cancer 2 Kidney Disease 2 Chronic Obstructive Pulmonary Disease 1 Other 13 Some of the conditions listed in the "other" category included allergies, ulcers, gout, osteoporosis, hyperthyroidism, pernicious anemia, diverticulosis, and post-tuberculosis. Thirty-nine respondents (81.3%) were taking at least one prescription medication, 27 (56.32) people were on at least two drugs, 16 (33.3%) were taking three or more medicines, ten (20.82) people were on at least four drugs, and five (10.AZ) were taking six 95 prescription medicines. Nine (18.82) subjects were taking no prescription drugs and five (10.A2) were taking neither prescription nor OTC medicines. The most commonly listed categories of prescription drugs are indicated in Table 5. Table 5: Use of Prescription and OTC Medicines by Subjects Prescription N. Over-the-Counter y! Cardiovascular 50 Analgesic/Antiarthritic 3i Analgesic/Antiarthritic 10 Gastrointestinal l9 Nutritional/Electrolyte 9 Nutritional/Electrolyte 12 Hormone/Hypoglycemic 8 Respiratory/Allergy A Respiratory/Allergy 8 Over-the-counter (OTC) drugs were used by 35 (72.92) of the respondents. Thirty-two (66.72) indicated use of both prescription and OTC drugs and four (8.32) listed only OTC medications. Categories of OTC medicines most frequently used are listed in Table 5. Drugs known to be ototoxic such as streptomycin, quinine, and nitrofurantoin were not listed by any of the respondents. However, 23 (A7.92) indicated that they took some form of aspirin which can damage hearing and cause annoying tinnitus if taken in high doses. More recently, beta-blockers have been implicated in hearing loss (Faldt, i98A). However, in this study only two people were on such medications, one each on nadolol (Corgard) and metroprolol (Lopressor). 96 HearingpLoss According to the audiological classifcation of Pure Tone Average (PTA), Speech Reception Threshold (SRT), and Speech Discrimination (SD) (see Chapter iV), 29 (60.A2) of the respondents were classified as having a ”mild” hearing loss and 19 (39.6%) had losses classified as "moderate." No respondents had a documented hearing loss in the "severe” category and thus analyses relating to that group had to be eliminated from the study. On a self-rated level of hearing loss, only eleven (22.9%) participants agreed with the audiological classification. Most self perceptions (33 or 68.82) indicated a greater impairment than the audiological measures suggested, most likely related to variations in speech discrimination ability within the given categories. Four (8.3%) people said their impairment was less severe than the measured classification. Twenty-three (A7.92) respondents felt their hearing had deteriorated in the past two years, two (A.22) said their hearing had improved (attributing this to use of a hearing aid), and 21 (A3.82) said they had noticed no change in hearing. Duration of hearing loss varied greatly (see Table 6) with six people stating that their hearing loss extended 20 years or more. However, most of the respondents, 30 (62.52), indicated that they'd had the hearing loss for less than ten years. in response to the item about who suggested they have a hearing evaluation, 15 (31.22) people said they had noticed the hearing loss themselves. Twenty-five (52.1%) said a family member was first to suggest they have their hearing tested, six (12.52) said a doctor 97 Table 6: Duration of Hearing Loss Time in Years ‘! Percentage 6 Months to 2 Years 8 16.7 2 to A Years 10 20.8 A to 6 Years 8 16.7 6 to 8 Years A 8.3 8 to 10 Years 0 -- 10 to 12 Years 8 16.7 12 to 1A Years 1 2.1 1A to 16 Years 1 2.1 16 to 18 Years 0 -- 18 to 20 Years 0 -- 20 Years 1 2.1 25 Years 3 6.3 31 Years 1 2.1 A0 Years 1 2.1 No Answer _2 A.2 TOTAL A8 100.0 advised audiological evaluation, one (2.1%) person indicated a nurse and another a friend as the first to suggest follow-up for hearing loss. All except seven participants in this study owned a hearing aid. Twenty-three had the aid for one year or less, eight for one to three years, and ten for more than three years. Amount of time the hearing aid is worn varies as indicated in Table 7. 98 Table 2: Pattern of Hearing Aid Use Hearing Aid Use ‘N Percentage All of the time I'm awake 22 52.A Only when I watch TV A 9.5 Only when i go outside my home 13 31.0 Seldom or never wear it 2 A.8 Other Description _1 __§;A TOTAL A2 100.0 Note: Seven subjects did not own hearing aids, and of this number two were audiometricaliy classified as "mild" and five as “moderate." Many respondents said that they were very satisfied with their hearing aids (18 participants) or at least had some improvement (22 participants). Only two people responded that the aid was a bother and they seldom or never wore it. People in this study were quite active socially. Forty-one (85.A2) indicated that they ate in restaurants at least twice a month, 33 (68.8%) shared activities with family or a few friends at least that often, 31 (6A.62), attended church, theater, or other functions that required hearing information as an audience member, and 22 (A5.82) attended social meetings where they might be called upon to participate. Only five people indicated that hearing loss interfered with their social activities. 99 Characteristics of Family Members Of the 29 (60.AZ) respondents who were married, all asked their spouses to fill out the Family Member form of the questionnaire and the M-A Scale of Hearing Handicap. Thirteen (27.12) forms were completed by an adult child, two (A.22) each by a friend and a grandchild, and one (2.1%) each by a sibling and a niece. While family member respondents were not required to be living in the same household, A1 (852) had face-to-face contact with the participant daily to once a week. Twenty-four (50%) listed minimal telephone contact with the subject because they lived in the same household, and an additional 20 (A22) family members reported weekly to monthly telephone contact. There was minimal discrepancy between participant and family member related to how much the hearing aid was worn. Only four (8.32) of the family members said the patient wore the hearing aid less than he or she claimed. One-third (16) of family members disagreed with the patient's opinion of whether or not the hearing had deteriorated. Four (8.32) of these felt the patient's hearing was better than the patient said it was, and 12 (252 of the total sample) rated the hearing level worse than the participant claimed. From these statistics alone it is difficult to determine the source of the discrepancy, whether some of the participants underestimate their hearing loss or family members tend to exaggerate the problem. 100 Research Question Results Findings related to research questions and subsets of questions are described or presented in tabular form below: Research Question 1: What are the hearing impaired elderly patients' perceptions of the psychosocial effects of hearing loss? a) What problems are most and least frequently reported by patients? M-A Scale items receiving the highest overall scores (indicating greatest level of handicap) by the participants are listed in Table 8. The numbers at the right are the overall scores for that item computed by multiplying Likert scale responses by number of participants checking each response. items receiving the lowest composite scores (indicating least handicapping conditions) are listed in Table 9 with the overall scores for each item. These scores were also computed by multiplying Likert responses by the number of subjects checking each response. 101 Table 8: Most Frequently Reported Problems--Participants 13292 ' Overall Scores i feel that people in general understand what it is like to have a hearing loss. 13A I feel very frustrated when I cannot understand a conversation. 132 i get upset when people are "mumbling.” 131 i get upset if i cannot hear or understand a conversation. 129 i get annoyed when people do not speak loud enough for me to hear them. 123 Group discussions make me nervous because of my hearing loss. 121 All except the last item are fnom the psychological scale. if the social scale only is considered, items reflecting the greatest handicap include: Group discussions make me nervous because of my hearing loss. i enjoy group discussions even though i have a hearing loss. i ask a person to repeat if i do not understand what is said. People act annoyed when i cannot understand what is being said in a group conversation. i enjoy social situations with considerable conversation. 102 Table 9: Least Frequently Reported Problems--Participant 153m ' Overall Scores 1 am afraid people will not like me if they find out that I have a hearing loss. 50 i avoid going to restaurants because of my hearing loss. 60 My hearing loss has affected my relationship with my family. 68 i tend to avoid people because of my hearing loss. 72 i feel negative about life in general because of my hearing loss. 75 i do not go places with the family because of my hearing loss. 33 Of the above items, the first and last are from the psychological scale and the rest from the social scale. in summary, it would seem that annoyances directly related to hearing loss are of more concern than the overall self-concept problems in this particular sample. b) What impact does degree of hearing loss have on severity of reported problems? Because subjects were selected who simultaneously fit the categories of "mild" or "moderate" hearing loss according to their Pure Tone Average, Speech Reception Threshold, and Speech Discrimination ability, correlations are not required for each type 103 of hearing measurement. The t-tests between groups with "mild" and "moderate” hearing loss were .33 (p - .7A) for the psychological scale and .67 (p - .51) for the social scale indicating no significant statistical difference in this sample (see Table 13). c) is there a difference in perceived handicap in those who report higher or lower levels of social activity? Social activity was measured by asking subjects to check-off various types of activities they participated in at least twice a month. As reported earlier, no one reported having no social activity and only ten people reported only one type of social interaction. Classifying social activity on a one to four scale and correlating that score with the M-A Scale results revealed no significant correlation between level of social activity and either psychological or social handicap (see Table 10). Table 10: Pearson Product Moment Correlation of M-A Scores and Social Activity S5315 Correlation* Significance Level Patient Psychological .0088 p - .A8 Patient Social .DA57 p - .37 Family Member Psychological -.06A8 p - .3A Family Member Social .00A3 p - .A9 *with degree of social activity 10A Research Question 2: What are the family members' perceptions of the psychosocial effects of hearing loss on their hearing impaired elderly relative? a) What problems are most and least frequently reported by family members? Items on the H-A Scale judged by family members to be areas of greatest handicap to their hearing impaired relative are listed in Table 11 with the overall scores indicated on the right. All of the items listed are from the psychological scale. Table 11: Most Frequently Reported Problems--Family Members lEEE Overall Scores He/She admits that he/she has a hearing loss to 0051 people. 127 He/She gets upset when he/she feels people are “mumbling." 122 He/she feels very frustrated when he/she cannot understand a conversation. 121 He/She gets upset if he/she cannot hear or understand a conversation. 120 He/She feels like he/she is isolated from things because of his/her hearing loss. 119 He/She feels that people in general understand what it is like to have a hearing loss. 116 105 Note: Overall scores are composite M-A Scale scores for each item as rated by family members determined by multiplying Likert responses by number of subjects checking each response. The problems of most concern to family members are similar to those listed by patients. Only the statement, "He/She admits he/she has a hearing loss to most people," is seen differently. While that item received the greatest handicapping score from relatives, patients did not list it among the top six problems. Apparently, relatives don't feel that the patients are telling others they have a hearing loss, or perhaps, patients don't perceive that telling others would be helpful. items receiving the lowest composite scores by family members indicating their opinion of least handicapping concerns to the participants are listed in Table 12. These are the same six items listed by the participants as being the least problem or concern although the order for a few of the statements are slightly different. Again, all except the last item are from the social scale. This also substantiates the findings that this particular sample was socially active; 38 (79.22) checked off at least two twice monthly group activities, and only five (10.A2) people said their hearing loss interfered with their social life. 106 Table 12: Least Frequently Reported Problems--Family Members item I Overall Score He/She is afraid that people will not like him/her if they find out that he/she has a hearing loss. 57 He/She avoids going to restaurants because of his/her hearing loss. 60 He/She does not go places with the family because of his/her hearing loss. 61 His/Her hearing loss has affected his/her relationship with his/her family. 66 He/She tends to avoid people because of his/her hearing loss. 73 He/She feels negative about life in general because of his/her hearing loss. 7A Note: Overall scores are composite M-A Scale scores for each item as rated by family members. Again, these scores were derived by multiplying Likert response scores by number of participants checking each response. b) How does degree of hearing loss relate to psychosocial problems reported by family members? The t-tests for mean differences in social handicapping scores rated by family members for those with mild and moderate hearing loss were not significant. However, differences in family rated 107 psychological scores were statistically significant when degree of hearing loss was considered (see Table 13). This is substantiated by the Pearson product moment correlation of degree of hearing loss with family member's rating of psychological handicap. Although still weak, this correlation of .292 was statistically significant at the p - .03 level indicating that with the increase in hearing loss, greater psychological impact was perceived by the relative. Table 13: t-test Results of M-A Scale Scores Between Subjects with Mild and Moderate Hearing Loss ‘SEQIS t-value Significance Igggrees of Freedom Family Member Psychological -2.06 p - .0A7* 37.0A Family Member Social -0.67 p - .507 26.19 c) is there a difference in degree of handicap reported by family members in patients who have higher or lower levels of social activity? Results of this finding are similar to those found for the participant in the comparable research question (see Table 10). Calculation of the Pearson r revealed no significant correlations for the psychological (-.06A8 p - .336) or for the social (.00A3 p - .A89) scales. Thus, level of social activity has no relationship to psychosocial impact of hearing loss as perceived by the relative. 108 Research Questioan: What are the areas of discrepancy between the patient and family member on psychosocial effect of hearing loss? A few general trends about patient and family member perceptions can be seen by studying the means and standard deviations. While there are no significant differences, it is apparent that the highest handicapping score is the family member perception of social impact and the lowest mean score is the patient's self-rating of psychological impact. Table 1A: Mean, Standard Deviation, and t-values of M-A Scale Scores Patient-Psychological 3.72 .55A Family Member-Psychological 3.82 .506 -l.16 (p - .26) Patient-Social A.06 .528 Family Member-Social A.20 .522 -1.36 (p - .18) The t-tests confirm the information projected above, that there is no significant difference in overall psychological and social scores as rated by the patient and family member. it is interesting to note that while average scores are very similar for all scales, relationships of scales as determined by Pearson product moment correlations were more highly correlated according to the person answering than the trait being studied. in other words, 109 Patient-Psychological and Patient-Social responses were more alike than Patient Psychological and Family Member-Psychological scores as can be seen in Table 15. Table 15: Pearson Correlations of Psychological and Social Scores Between Patients and Family Members Scale Comparisons Correlation Patient-Psychological -- Patient-Social .70 Patient-Psychological -- Family Member-Psychological .A3 Family Member-Psychological -- Family Member-Social .75 Family Member-Social -- Patient-Social .52 To determine items most often seen as similar by patient and family member, item by item correlations were calculated. Items with the strongest agreement and the correlation coefficients are listed in Table 16. As can be seen in comparison of this list with those of highest and lowest ranking presented earlier, there is more agreement with lowest ranked items. in other words, patient and family member can agree on what is not a problem better than they can on what is a problem. 110 Table 16: List of Highest Item-by-item Correlations Between Patient and Family Member M-A Scale item Correlation My hearing loss has affected my relationship with my family. .66 i feel very frustrated when I cannot understand a conversation. .SA i tend to avoid people because of my hearing loss. .5A Family react rudely when i do not understand what they say. .A6 The family is patient with me when I cannot hear. .AA 1 avoid going to restaurants because of my hearing loss. .Ai i feel negative about life in general because of my hearing loss. .Ai Likewise, differences were determined by listing items with lowest correlation between patient and family member responses. Correlations in this study were somewhat higher than those of McCarthy (1979) who obtained coefficients ranging from .5872 to -.0035. items with the lowest correlations, indicating greatest discrepancy between patient and family member responses are listed in Table 17. 111 Table 12: List of Lowest item-by-ltem Correlations Between Patient and Family Member M-A Scale item Correlation I ask a person to repeat if i do not understand what is said. -.02 i do not go places with the family because of my hearing loss. .0A People in general are tolerant of my hearing loss. .05 My hearing loss has affected my life in general. -.18 i feel that people in general understand what it is like to have a hearing loss. -.19 People act annoyed when l'cannot understand what is being said in a group conversation. .19 Many of these low correlation items reflect a discrepancy in understanding the impact of hearing loss and indicate a need for including the patient's perception of the effect of hearing loss in patient and family member counseling. In looking at similarities and differences, it is interesting to note that on three items 35 patients and family members agreed exactly. Again, this agreement was on items related to self-concept and social activity, areas judged not to be a problem by either patient or family member. b) What impact does severity of hearing loss have on similarities and differences in patient and family member answers? 112 in reference to Table 13, it is noted that there is a significant difference in the psychological rating ascribed by the relative for those subjects with mild and moderate losses. This same pattern does not hold true for the social handicap ratings where there were no significant differences related to degree of hearing loss. Thus, family members feel that psychological impairment ls increased in their elderly relatives who have a greater degree of hearing loss. c) What Impact do high and low levels of social interaction have on similarity of answers? Difference scores of participants and relatives with the four levels of social activity were calculated by the analysis of variance technique. There were no significant differences in F ratios indicating no more variation between groups categorized by social activity than within groups. Specific values for psychological and social scales are seen in Table 18. Level of social activity, therefore, had no impact on M-A Scale difference scores between patient and family member. This is not surprising in that most of the subjects were socially active and the correlation of M-A Scale scores and social activity were not significant. Table 18: ANOVA for Level of Social Activity F Ratio Significance Level Differences in Psychological Scores .A68 p - .71 Differences in Social Scores .355 p - .79 113 Other Research Finding; in this section are presented the findings related to the additional research questions listed in Chapter iV. These findings are presented as correlations of M-A Scale scores with various sociodemographic factors, health status, and family relationships. a) Are there sociodemographic (age, sex, living situation) differences in the degree of perceived psychosocial problems? has Age was divided into three categories by the decades 61 to 70, 71 to 80, and 81 to 90 years with 15, 15, and 12 subjects in each group respectively. (Six cases are missing because of incomplete M-A scores.) As can be seen in Table 18, there were no significant differences in patient or family member scores according to age using the ANOVA technique, which was the necessary statistical procedure with the independent variable divided into three categories. S25 Likewise, there were no significant differences in psychological or social scores reported by patients or family members for males and females (see Table 18). Differences for this characteristic were calculated using the t-test. 11A Living Arrangement For calculation purposes, participants' living situations were categorized as “alone” (N - 13) or "not alone” (N - 31). All except two persons in the latter category lived with a spouse. Comparison of t-values revealed no significant differences in M-A Scale scores in either the psychological or social categories by living arrangement (see Table 19). Again, the t-test was used with the dichotomous independent variable. Table 19: Analysis of Differences in M-A Scores for Age, Sex, and Living Arrangement as Reported by Subjects and Family Members M-A SCALE SCORES Patient Patient Family Member Family Member Variables Psychological Social Psychological Social Age (F ratiO) .A7 (p=.63) 1.57 (p-.22) .33 (p=-72) .63 (p=.5A) Sex (t-value) .55 (p-.58) .06 (p'.95) -.67 (p'.51) -.27 (p'.79) Living Arrangement (t-value) .19 (p=.85) .25 (p-.8l) .11 (p-.9l) -.60 (p-.55) in summary, age, sex, and living arrangement had no impact on either the psychological or social M-A scores as reported by the patients. 115 b) How do sociodemographic factors (age, sex, living situation) relate to differences in psychosocial problems reported by the patient and family member? Analyses for this question were done by taking the difference scores in patient and family member responses and analyzing them by t-tests or analysis of variance of the different groups. Again, t-tests were used with the dichotomous independent variables, sex and living situation, and ANOVA used with age which was divided into three categories. £92 Differences between age categories were assessed using analysis of variance. F ratios were 1.58 ( p - .22) for the psychological difference scores and .71 (p - .50) for the social difference scores between patient and family member by age groups. S35 influence of sex was calculated by performing t-tests on difference scores between patient and family member responses. Results were non-significant with psychological difference scores having a t-value of .52 (p - .60) and social difference scores having a t-value of .91 (p - .37). 116 LivingQArrangement Difference scores for living arrangement (alone or not alone) were also insignificant. Results were .77 i P ' .A5) for t-tests of the psychological differences scores and -.57 (p - .62) for the social difference scores. Thus, age, sex, and living arrangement had no bearing on the differences in perception of psychosocial impact of hearing loss reported by primary subjects and family members. c) How does the patient's overall perception of health status affect reported problems? Calculation of Pearson product moment correlations revealed no significant relationship between perceived health status (rated on a 1 to 5 scale, ”very good" to "very poor") and patibnt scores on the M-A Scale of psychological or social handicap. The correlations, although not significant, were in a logical negative direction, that is, as health status improved the M-A handicap score declined (see Table 20. Table 20: Pearson Product Moment Correlations Between Health Status and M-A Scale Scores of Patients and Family Members Patient Patient Family Member Family Member Psychological Social Psychological Social -.1A5 (p-.l7) -.227 (p-.07) -.150 (p-.l7) -.272 (p-.0s)* 117 d) How does the patient's overall perception of health status relate to psychosocial problems reported by the family member? As seen in Table 19, there was a small but statistically significant correlation between patients' perceived health status and the family members' rating of social handicap, again, in the expected direction, the poorer the relative's health, the greater the social handicap. This may lead one to believe that health factors other than hearing loss are interfering with social activity, especially since correlation of hearing loss and social activity were not significant and the literature supports the idea that hearing impairment does not affect social activity that is measured in number of social interactions (Weinstein 8 Ventry, 1982). e) Are there differences in types of psychosocial problems reported by spouses and adult children of the hearing impaired elderly? Evaluation of data fronlthe 28 spouses and 11 children who completed the entire M-A Scale revealed no significant differences in the mean scores in either the psychological or social scales (see Table 21. 118 Table 21: Comparison of M-A Scale Scores for Spouses and Adult Children Psychological Mean Score t-value Spouses 3.8A3 -.32 (p-.75) Adult Children 3.891 Social Mean Score t-value Spouses A.21A .10 (p-.92) Adult Children A.195 Additional Findipgg Other findings determined after analyzing all data are basically of two types, correlations between descriptive variables and revision of the scale and redefinition of content. The major significant correlations not previously discussed in relation to the research questions are listed in Table 22. These findings are not directly related to hearing loss but rather to general health. All are quite logical, for example the high correlation between number of chronic illnesses and number of prescription drugs. Another observation of this study was the inability to substantiate separate psychological and social constructs in the M-A Scale. This topic is discussed in the following section on reliability and validity. 119 Table 22: Statistically Significant Correlations between Descriptive Variables Factor 1 Factor 2 Correlation Education Occupation .698 (p-.001) Health Status Number of Chronic .609 (p-.001) illnesses Health Status « Number of Prescription .577 (P'.001) Drugs Number of Chronic Number of Prescription .82A (p-.001) Diseases Drugs Number of Chronic Number of OTC Drugs .632 (p-.001) Diseases Reliability and Validity McCarthy, in her original work, checked for the reliability of her new instrument and indeed was able to establish good statistical reliability using three methods, test-retest, item consistency (Chronbach's alpha), and the heterotrait-heteromethod statistical procedure. in this study there was no test-retest situation but measures of internal consistency were not as high as those obtained by McCarthy, especially in the psychological scale rated by the relative. To some extent a decline could be expected because of population differences, environmental differences, and the shrinkage effect whereby chance correlations figured in the original sample calculations change with testing of a new sample (Borg 8 Gail, 1979). McCarthy's population were ages 21 to 50 whereas the subjects 120 of this study were the elderly who may have more problems interpreting tests and maintaining attention. Environmentally, the testing situation was different in that McCarthy's subjects filled out the forms in a clinic situation and these participants did it at home. McCarthy, in looking at methods factors such as item wording found a higher correlation using negatively worded items than with the whole scale and felt that patients and family members might agree more on what was a definite problem and likely to make an emotional impact. A correlation without positive items was not repeated in this study because in reviewing items for internal consistency it was mainly positively worded items that correlated poorly with the rest of the scale. Because McCarthy's alpha was computed from the original 100 items, it is understandable that 3A items would have a correlation above .8. in her dissertation there is no mention of recheck of alpha after the scale was reduced to 3A items although the reliability obtained by the monotrait-monomethod statistical procedure was equally good. Discussion of a reduced number of items to form one psychosocial scale is presented in Chapter Vi. Furthermore, there is doubt about a true differentiation of a psychological and a social subscale in this instrument because inter-item correlation coefficients were extremely low for some of the items supposedly within the same scale. Also, alpha calculations for each subscale are not very different from that of the correction for attenuation for both of the subscales combined. in this study the alpha for the psychological scale was .79, that for the social 121 scale was .81, and that for the correction for attenuation for both patient subscales was .83. Alphas for the family member psychological and social subscales were .5A and .85 respectively while correction for attenuation for both scales was .99. Summary in Chapter V is the presentation of statistical analyses related to the sociodemographic characteristics of the sample, results of research questions and other findings, and discussion of reliability of the scale. Pearson product moment correlations, t-tests, and analysis of variance were calculated to determine similarities and differences in patient and family member responses. in Chapter V1 is a discussion and interpretation of findings and implications for nursing practice, education, and research. CHAPTER Vi SUMMARY AND CONCLUSIONS introduction An interpretation of the research findings and a discussion of their implications for the nursing profession are presented in Chapter VI. For purposes of discussion, the chapter is organized into sections related to summary of the problem, sociodemographic characteristics, analysis of research question results, relationship to nursing theory, implications for nursing practice, education, and research and recommendations for further study. Summary of the Problem A descriptive study was designed to obtain information on perceived psychosocial impact of hearing loss on the elderly. Questionnaire responses were gathered from family members as well as the primary participants so that comparisons could be made between the two sets of data. This research project was conducted for several reasons: 1) There has been much discussion about psychosocial impact of hearing loss but little work done with the elderly (Henoch, 1979) and poor agreement on what has been done (see Chapter iii). 2) Benefits of family support in hearing rehabilitation are often discussed but virtually no research has been done on hearing loss and family relationships particularly with the elderly. 123 3) interest and research on hearing loss is extremely limited in the nursing literature despite the acknowledged impact of sensory deficit on quality of life. Because hearing impairment is a chronic deficit to which one must adjust in one way or another, the Roy Adaptation Model (1981) was chosen as the nursing conceptual framework for this study. It is apparent that hearing loss requires some adjustment in the four adaptive modes described by Roy. There is not only the physical component of auditory deficit, but a threat to self-concept, especially if one views hearing loss as a sign of weakness or old age. There may also be interference with role performance when communication is essential and potential problems with either overdependence or refusal to accept necessary help. Roy's concept of assessing health problems according to the obvious difficulty (focal stimuli), the extenuating circumstances (contextual stimuli), and personal attitudes and beliefs (residual stimuli) are fitting for hearing impairment as well. Caplan's (1981) Mastery of Stress Theory is also pertinent to hearing loss. His main premise is that social support offered during adaptation to loss must be appropriate to the person's needs and stage of recovery. Adaptation to hearing loss has received a great deal of attention in the audiological literature. Particularly interesting is the fact that people with the same audiometricaliy documented hearing impairment do not necessarily manifest the same problems. Hearing handicap scales have been developed to try to tap these differences. 12A While early scales were more situational in concept (e.g. i cannot hear over the telephone), recently developed instruments are more personal in nature. An adapted form of one of these scales, the McCarthy-Alpiner Scale of Hearing Handicap, was chosen as the main instrument for this study. Forty-eight primary subjects between the ages of 61 and 90 were referred by four private audiology clinics. All participants were classified as having mild or moderate hearing loss according to measures of pure tone average, speech reception threshold, and speech discrimination. After insuring confidentiality and following recommended procedures to obtain consent, questionnaire packets were sent to patients and family members who agreed to participate. Besides the M-A Scale of Hearing Handicap, subjects were asked to fill out questionnaires about sociodemographic characteristics, health status and hearing loss. The expected finding of significantly different perceptions of patients and family members did not occur in overall scores but there were some differences in major concerns. There was a small but statistically significant difference in family members' perception of psychological impact between patients with mild and moderate loss and a perception of greater social impact of those subjects in poorer health. There were no significant correlations between age, sex, social activity, or self-rated level of hearing loss with either of the M-A subscales. 125 Furthermore, there seemed to be a blurring of the psychological and social subscales on the M-A Scale as evidenced by the mixed alpha correlations between scales and the fact that patient ratings of psychological and social subscales were more highly correlated than patient and relative ratings of a single scale. Thus, it could be argued that there are not two subscales but one psychosocial scale. Sociodemoggaphic Characteristics S35 This small sample included 22 males and 26 females, not generally consistent with the ratio of hearing loss in the population which is higher for men than women (Rahko, 1985). However, it may be that more women are willing to seek help from an audiological clinic and also more likely to volunteer as subjects in a research project as other studies have also reported on more women than men (Brooks, 1979; Ventry 8 Weinstein, 1982; McDavis, 1983). in addition, there is the basic demographic fact that there are more women than men in the older population."McCarthy (1979), who limited her population to those below age 50, studied 58 men and only two women. Age As stated earlier, degree of hearing loss continues to increase with age. Estimates range from 20 to 232 of all elderly to A82 of those over age 75 (Rahko, 1985). However, the likelihood of seeking help or of adapting to use of a hearing aid declines with advanced age (Neimeyer, 1973; Maurer 8 Rupp, 1979). it is not surprising then 126 that the great majority of participants (75%) were under 80 years of age. With advancing age the health care priorities imposed by other conditions as well as mobility problems would preclude help-seeking behavior for treatment of a hearing loss. Marital Status The 60.A2 (N - 29) of the participants who were married is consistent with the proportion in the total elderly population. According to the Profile of Older Americans, 198A, 792 of men and A02 of women over age 65 are likely to be married. Living Situation Living situation of the subjects is also reflective of the general population. Eighty-two percent (N - 18) of the men were living with their spouses (77% according to the Profile of Older Americans, 198A), and the 312 (N - 15) living alone was exactly the same figure reported in that publication as the national average for the elderly. Summary of Statistical Procedures in this section results of findings related to the major research questions are presented and discussed. Research Question 1: What are the hearing impaired elderly patient's perceptions of the psychosocial effects of hearing loss? 127 in looking at major concerns of the primary subjects, the item with the highest handicap rating was, "i feel that people in general understand what is is like to have a hearing loss." Fifty-two percent (N - 25) considered this a problem at least ”sometimes." This finding is in agreement with the Thomas and Herbst (1980) subjects; A22 of them felt their hearing problem was understood by others and only A82 felt their spouses understood. The other items most highly ranked by participants were the annoyances directly related to hearing loss such as being frustrated at not being able to hear a conversation, becoming upset when people "mumble," and feeling nervous in a group discussion. These concerns are very similar to those documented in the Stream 8 Stream (1980) study. impact on self-concept such as being afraid people will not like them or feeling negative about life in general because of hearing loss were of least concern to this study sample. Also, changes in social behavior such as frequency of going out, were not seen as major problems. Degree of hearing loss and level of social activity had no significant impact on psychosocial handicap as rated by the subjects. Other studies supporting and refuting these findings can be found in the literature. Thomas et al. (1983) found no adverse effect of hearing loss on emotional status or social interaction, Dye and Peak (1983) found no increase in paranoia and depression among the hearing impaired, and likewise, Weinstein and Ventry (1982) found minimal impact on social activity, as measured in frequency of contact, in their elderly subjects. 0n the other hand, Thomas and Herbst (1980) 128 found anxiety and depression to be more prevalent in those with both pure tone loss and speech discrimination problems versus those with only one of those impairments. in summary, the major findings related to the first research question are that the hearing impaired elderly feel others lack understanding of their sensory deficit and that having only partial auditory input is annoying and frustrating. This may imply a need for teaching the general public about the effect of hearing loss and practical ways to minimize the impact. Research Question 2: What are the family members' perceptions of the psychosocial effects of hearing loss on their hearing impaired elderly relative? Family members rated, "He/She admits he/she has a hearing loss to most people," as the major problem. Because this is a reflected item, it means that families believe their hearing impaired relatives are not admitting the loss as much as they should. The item related to lack of understanding of what it is like to have a hearing loss, ranked number one by patients, was listed as the number six concern by relatives. Social isolation as well as the frustrations and annoyances directly related to not being able to hear were perceived by family members to be major problems. Discussions of denial by the hearing impaired have abounded for years In gerontology and audiology texts and journals. However, empirical studies about this defense mechanism (who denies, to whom, 129 under what conditions) are minimal. McDavis (1983), in her attempt to link denial to locus of control and degree of hearing loss, found that denial was more likely among those with moderate loss than either mild or severe loss. There was no relationship of denial to locus of control. While there are several exploratory studies (Stream 8 Stream, 1980; Tyler et al., 1983) requesting hearing impaired patients to simply list problems and needs related to hearing loss, there has been no comparable study of the family members to assess their feelings and needs. Under the subsets of Research Question 2 related to degree of hearing loss and level of social activity there was one finding that reached statistical significance. The family members' perceived psychological impact was significantly greater for the moderate than the mild loss group. This finding did not occur in McCarthy's (1979) original work. Family members also reported a significantly greater perception of social impairment in those patients with poorer health status. in reviewing results of the second research question, it is noted that family members feel that part of their relatives' problem is not admitting the hearing loss. They did acknowledge the frustrations of dealing with decreased hearing but did not recognize as a major problem the lack of understanding by others. indications are that families need counseling about how their relative feels, support in dealing with their own frustrations because of their relatives' behavior, and assistance in resolving family conflicts that arise because of hearing loss. 130 Research Questiony3: What are the areas of discrepancy between the patient and family member on psychosocial effect of hearing loss? Although there were no statistically significant differences in overall psychological or social handicap scores between patients and family members, there were no high correlations either. Based on calculations of the square of the correlations, there was only about a 252 overlap of participant and family member responses. in looking at item-by-item correlations, the highest was .66 for Question 16, ”His/Her hearing loss has affected his/her relationship with his/her family," and this, as with most of the other higher correlations, was a consensus on what was not a major problem rather than an agreement about areas of difficulty. Only items about frustration when unable to hear a conversation were seen as a major problem by both patients and relatives. Other than McCarthy's (1979) study where she obtained a similar range of correlations in ltem-by-item comparisons, there have been no studies evaluating patient and family member perceptions. Implications of such results are the obvious need for further research on family member perceptions as well as the need for counseling both patients and relatives as to the other's needs and problems. Specific recommendations for further research and implications for the nursing profession are presented in the following section. l31 Recommendations for Further Research Suggestions for further research will be discussed in relation to four major topics: 1) the instrument; 2) the content of questions; 3) the population; and A) the design. The instrument As discussed in Chapters 1V and V, validity of the instrument was not established in the original work, but whether this was due to selection of criterion validity (family members' rating of handicap), methods factors (item wording and order), or overlap of psychological and social constructs (as indicated by the Chronbach's alpha coefficients) is difficult to determine with only one replication of the instrument on a small sample. Because alpha coefficients are mixed within the psychological and social subscales and correlations of patient psychological and social scores are higher than patient and family member psychological scores, there is considerable doubt as to whether there are two distinct scales. This is supported by McCarthy's inability to establish distinction between psychological and social constructs by a different statistical method (heterotrait-heteromethod). it may be that in applying the constructs to a complex personal situation, such as impact of hearing loss on life style, it is impossible to separate ”psychological" from "social” factors, and for practical purposes, unnecessary to do so. 132 Consideration of some of the individual test items from a logical point of view reveals why this clouding of constructs may be a problem. A question such as Number 8, "He/She feels that people in general understand what it is like to have a hearing loss," obviously has both psychological and social components. Another problem with item wording may be the shift between the positive and negative mode. Although inclusion of both positively and negatively worded items is usually advised in questionnaire construction to avoid bias (Polit 8 Hungler, 1983), consideration of an item such as, "He/She is not interested in group activities because of his/her hearing loss," is particularly confusing to the elderly. The answer ”always" means, yes, he/she is not interested. in summary, it seems that because of lack of established validity, clouding of psychological and social constructs, and unclear wording of some Items, the instrument needs further refinement and testing. Assuming there is only one psychosocial scale, items with the lowest alpha coefficients and least logical consistency were eliminated to produce a shortened 16-item version (see Appendix 1). Statistical tests using this new scale are summarized in Table 23. it is apparent that internal consistency is higher. it is recognized, however, that items that appear similar but have different nuances of meaning may be important in an instrument that is to be used to identify problem areas for rehabilitation work. 133 Table 23: Comparison of Means and internal Consistency Coefficients for M-A Scale and Revised-Scale internal Consistency Overall Score (alpha) (mean) M-A Scale -- Psychological-Patient .79 3.71 M-A Scale -- Social-Patient .81 A.10 M-A Scale 4- Psychological-Relative .5A 3.81 M-A Scale -- Social-Relative .86 A.21 Revised Scale -- Patient .91 3.89 Revised Scale -- Relative .93 3.99 This revision eliminates most of the positively worded items (all except 22 and 2A; see Appendix E) felt by McCarthy to be a problem because of item wording. Most of these were eliminated because of poor alpha coefficients, but whether this statistic resulted from wording problems only or poor content is difficult to say. (All calculations and discussion in this study were based on McCarthy's original work as outlined in the methodology section.) Content The content of instrument items, while certainly reflecting psychosocial impact, seems to be lacking other areas of concern noted in the literature. These include embarrassment about hearing loss (Stream 8 Stream, 1980), negative feelings about hearing aids (Thomas 8 Herbst, 1980), and degree of enjoyment versus mere attendance at 13A social activities (Weinstein 8 Ventry, 1982). Pilot study subjects mentioned other areas of irritation such as family frustration with the patient's refusal to use assistive devices or the public's lack of awareness of how to help the hearing impaired. it would then seem appropriate to do more exploratory studies in one-to-one interviews with patients and family members to learn specific causes of their frustrations and attempt to devise a more inclusive and comprehensive instrument. it would be helpful to devise a scale specifically for the elderly, one that is not only pertinent to content but manageable in manner of response. Roy's four adaptive modes can serve as a useful guide to content areas. Based on Caplan's theory that help must be specific to a person's needs and the findings of Oppegard et al. (198A) that social support may act as a buffer on the impact of sensory loss, it would be useful to explore patient perceptions of helpful and unhelpful support as it relates to interaction with their families and participation in social events. in addition to the general questions on psychosocial impact, it would also be useful to develop an instrument that differentiates social activity from social enjoyment to determine the relationship of each to hearing loss. Weinstein and Ventry (1982) theorize that it is social enjoyment that is mainly affected. That theory would be supported by this study in which participants were socially active yet listed the frustrations of not being able to understand conversations among the major handicapping items. 135 Population Population diversity also needs to be considered. Obviously, it is difficult to draw conclusions from two small study samples, both known to audiological services. It would be most interesting to compare findings for a group of elderly whom relatives have identified as having a hearing loss but who have refused to seek audiologic evaluation. Another worthwhile project might to be study self and family perceptions before and after a person seeks help from an audiological clinic to see what discrepancies are resolved with routine audiological rehabilitation and which remain and need to be addressed. Design Because research on the impact of hearing loss in the elderly ls still relatively new, exploratory studies are needed to develop background information in various populations and situations. Types of exploratory studies might include: 1) rechecking concerns related to hearing loss among large populations of hearing impaired elderly; 2) eliciting ideas on types of family support most and least helpful; 3) requesting information the hearing impaired see as helpful and needed from health professionals; and A) discussing frustrations experienced by family members in dealing with older hearing impaired relatives. With information gathered by exploratory and descriptive studies it would be ideal to conduct experimental studies with patient and family counseling as the intervention and a pre- and post-hearing 136 handicap scale as the dependent variable. It might prove useful in this type of study to remeasure at six-month to yearly intervals to assess duration of the effect of counseling so that ongoing programs could be established if necessary. it is only by studying the problem from different perspectives and building on previous research that a solid knowledge base is formed which can be used to apply appropriate interventions and predict successful outcomes. Recommendation for NursingPractice Recommendations for nursing practice will be discussed in relation to the nursing process and Roy's Adaptation Model. Later in this section specific considerations for primary care and advanced practice are reviewed. Before becoming involved in the nursing process itself, nurses need to develop an awareness of the prevalence of hearing loss among the older population (23 to 602 according to some authors depending on age and general physical health) (Harford 8 Dodds, 1982). Developing a "level of suspicion" about the sensory problem hopefully will lead to earlier detection and intervention. Nursing assessment, according to Roy, is on two levels, an awareness of the presenting or obvious problem (focal stimuli) and a probing for background factors (contextual stimuli) and attitudinal influences (residual stimuli). Hearing loss certainly typifies this complexity of assessment. Realizing that each patient is different, the nurse must decide whether the physical hearing loss, a family member's nagging, or refusal of the patient to acknowledge the 137 impairment is the major problem interfering with adaptation. Given the social importance of hearing loss and the differences in patient and family member perceptions found in this study and others (McDavis, 1983; McCarthy, 1979), it would be wise to obtain information and opinions from the family as well as the patient. With the appropriate information and consideration of the relationships among the types of stimuli, the nurse can develop specific diagnoses to guide planning and intervention. From the examples of nursing diagnoses listed below it is apparent that presenting problems and focus of intervention would be different. Sensory deficit (hearing loss) related to prebycusis resulting in complaints of inability to understand conversation in crowds and request for hearing evaluation. Social isolation related to severe hearing loss uncompensated by hearing aid resulting in complaints of loneliness and boredom. Self-concept deficit related to unacknowledged hearing loss resulting in withdrawal from club memberships, disinterest in work performance, and personality changes noted by family. Knowing whether the major problems is physical, emotional, or social is important for the planning stage of the nursing process if one is to tailor the interventions to the specific needs of the patient as emphasized by Caplan's Mastery of Stress Theory (1981) and supported by other authors (Carnevali, 1979; Wortman, 198A). 138 if presenting problems and patient behaviors are different, obviously there is no one best way to promote adaptation to hearing loss. Interventions, based on the literature or this study, are related to each of Roy's four modes of adaptation and presented below. Physiological -- explaining importance of otological and audiological examinations to determine what can be corrected by medical treatment or hearing aid -- giving information to patient and family about physical changes in the ear and hearing and potential impact -- manipulating the environment with the use of assistive devices, reduction of background noise, and increase in lighting Self-concept -- supporting the patient to help him or her to acknowledge the hearing loss -- promoting discussion of patient's feelings, frustrations, and concerns about how others view him or her -- exploring options and alternatives for dealing with hearing loss Role -- encouraging basic strategies to improve communication, e.g. speaking more slowly, looking at patient, lowering tone of voice I39 -- exploring feelings about enjoyment and participation in social activities versus merely being present -- counseling patients and family members about the other's perception and potential responses interdependence -- supporting patient to acknowledge hearing loss and accept the aid of amplification, rehabilitation, and communication strategies -- promoting continued participation in activities/groups so that avoidance and withdrawal do not become an established habit Evaluation of the interventions will have to take Into account the progress made in the major problems and contributing factors. if the major problem was lack of treatment for hearing loss, one might well expect improvement in audiometric measures with professional intervention. in other situations the primary goal may be reduction in self-depreciating behavior or return to former level of social activity. In still other cases the major aim may be to decrease family conflict. The complexity of human nature may make hearing loss difficult to treat but taking the time to complete a thorough assessment and plan a comprehensive intervention will certainly increase the chance of success in promoting adaptation to hearing loss. Nursing assessment and treatment will be greatly enhanced by a solid knowledge base about auditory impairment and its impact on the elderly. 1A0 Implications for primary care with emphasis on such health promotion areas as prevention, screening, education, and referral may include the following activities: I) 2) 3) A) 5) 6) Promoting use of ear protection in noisy environments influencing decreased use of ototoxic medications Suggesting and/or conducting early and periodic screening for those at high risk of hearing loss Educating the public about physical and psychosocial changes in hearing impairment Promoting earlier rehabilitation to facilitate adaptation to assistive devices Referring to certified audiologists and otologists and explaining the rationale Nurses in advanced practice are likely to become involved in more complex patient situations or assume more influential relationships with other professions and the public. Specific examples of such involvement are listed here: i) 2) 3) A) Family counseling in psychosocial crises or in cases involving multiple chronic disease Educating other nurses in both formal and informal situations Networking with audiologists and collaborating on plans of care implementing public education programs through talks, seminars, and classes 1A1 5) Serving as an advocate for the hearing impaired to community and industrial leaders 6) Conducting research related to problems of hearing loss and workable solutions Recommendations for Nursing Education There are many aspects of "education" that need to be addressed related to earing loss in the elderly. Because of the prevalence of the problem, the impact on interpersonal relationships, and the lack of public and professional information, education needs to be considered not only in terms of what nurses need to know but also in what they need to teach. Important findings from the literature and from this study will be lsited along with implications for education to various populations. 1) Hearing loss is a prevalent problem among the elderly and likely to increase with the aging of the American population. This statement, mainly supported by the literature (Butler 8 Lewis, 1982; Alpiner, 1982; Harford 8 Dodds, 1983), is indirectly substantiated in this study by looking at numbers of patients and percentages of elderly people seen at the four clinic sites from which participants were referred. As indicated in Chapter iii, there has been improvement in basic nursing texts about information related to hearing impairment, detection, and treatment, but there is still not much emphasis on hearing loss considering its prevalence. Nurses need to be taught 1A2 basic aging changes in the hearing mechanism, impact of noise, drugs, chronic disease, and audiological services available, especially basic information and care of hearing aids. Often the elderly in acute settings or long-term care facilities are unable to manage their aids. More importantly, nurses must be taught to integrate assessment for hearing loss into all patient encounters because of the impact on patient teaching, behaviors toward professionals and family members, and patients' feelings about themselves. As Important as it is to identify problems, nurses must also learn to assess patient and family strengths for cues as to which sources of support might best facilitate adaptation. Another need identified by patients is to have health care providers give them correct audiological and referral information (Garstecki, 1982). Nurses in advanced practice have the opportunity to teach other nurses through staff development as many practicing nurses have had very little education about sensory loss. The clinical nurse specialist will also be involved in family education and counseling when complex problems arise because of hearing loss. Hopefully, nurses will also participate in community education programs such as seminars for those who provide services to the elderly and information to the general public to heighten their awareness of hearing loss and its impact on life style. Conducting research on the effect of hearing impairment on personal relationships and responses to other chronic conditions is an important project as 1A3 there has been virtually no research done by nurses in this area. it is Important to maintain a spirit of inquiry and an interest in passing on new information. 2) Patients and family members do have different opinions about the impact of hearing loss. According to the results of this study, family members and patients both acknowledge the frustration and annoyance of hearing loss. However, there are some differences of opinion, particularly about the patients' feeling that others don't understand the problem and family members' thinking patients should be more willing to admit their sensory loss. Based on this discrepancy of perceptions, nurses should be taught to do family as well as patient assessment in order to look for contextual and residual clues that contribute to a problem situation or solution. If nurses are taught to include the family in assessment, then relatives must also be included in education and counseling sessions as hearing loss is not a problem that can be treated in isolation. Information about patients' feelings and family frustrations need to be brought to the attention of the public through seminars and media articles. Realizing this is not a unique problem may facilitate families to present themselves for assessment and counseling. 1AA Nurses in advanced practice have an opportunity to bring information to other health professionals, helping them consider the problem of hearing loss in prescribing ototoxic drugs, setting up telephone reassurance calls, urging an increase in social activities, or doing patient education in a noisy room. 3) While hearing loss does not interfere with going to a social activity, people become frustrated and annoyed if they cannot hear. Nurses and other professionals need to be taught that being present at a social activity is not the same as enjoying it. it will be helpful to learn strategies to enhance conversation especially in group situations such as sitting closer to the front to watch facial expressions, not sitting next to noisy appliances, and making use of amplifying equipment if available. This advice can in turn be passed on to other health care workers and the public. it may also be helpful to remind patients and families that social needs do not necessarily need to be fulfilled in a crowd. One-to-one and small groups in quieter environments may be much more satisfying, especially during the time a person is adjusting to use of a hearing aid. Discovering new ways to solve communication problems and passing along practical suggestions is certainly in the domain of the advanced practice nurse. In summary, teaching responsibilities are to the patient, family, general public, other nurses and other health professionals. The main teaching focus is dependent on the particular situation but nurses should keep in mind a basic principle of Roy's Model, that 1A5 people always react to the problem of hearing loss wholistically and nurse educators must include physical, psychological, and social considerations in their assessment of prior knowledge level, teaching strategies, and evaluation of effectiveness. Discussion of Conclusions in summary, the main conclusions drawn from this study are listed below and discussed in terms of their relationship to other research and implications for practice and theory. I) There are no statistically significant differences in overall psychological and social scores between patients and family members. This finding of moderate correlations between family member and patient perceptions was not unlike that of McCarthy (1979) who approached the problem from the opposite assumption (family scores could be used as criterion validity) and a totally different statistical method (heterotrait-heteromethod). Analysis of responses indicates family members do seem to appreciate the frustrations and annoyances their hearing impaired relative endures. The relatives also agree on issues that are not a problem, such as change in social activity or general feeling of self-rejection. It is helpful for nurses to know that family members are not totally oblivious to their hearing impaired relative's plight. Building on the knowledge and empathy they already have is an important teaching strategy. 1A6 Because this area of concern and study is so new, the major implication may well be the need to develop more discriminating instruments to insure universality of the content, to explore frustrations of the family, and to study the influences of patient feelings and family frustrations on the other's response and behavior. 2) There are differences in major concerns of the hearing impaired and their relatives. The item receiving the highest handicapping score for participants was, ”i feel that people in general understand what it is like to have a hearing loss," while families felt, "He/She admits he/she has a hearing loss to most people," was the greatest problem. This might be interpreted as a vicious circle situation. If a hearing impaired person feels his problem is not understood, he or she may see no point in revealing it to others. Family members may in turn feel that if a person isn't even going to admit the problem, how can they have empathy for him or her? These problems of lack of understanding (Thomas 8 Herbst, 1980) or denial of hearing loss (McDavis, 1983) have been addressed in the literature but never studied in relationship to each other. This would seem to be an important direction for theory development if health care providers are going to assist in problem-solving. While it seems important that patients and family members initially be taught about physical changes in the ear and potential impact on behavior (e.g. selective listening because of the energy required to maintain a high concentration level), information about changes In 1A7 physical status and ongoing support for both patient and family member is also essential. As with many chronic diseases initial teaching is not enough to ensure changes in personal habits and repatterning of family relationships. 3) There is no distinction of psychological and social constructs of the M-A Scale as determined by internal consistency coefficients. Because of the mixed alpha coefficient for the psychological and social subscales and the high correlation for attenuation for the whole instrument, there does not seem to be a distinction between these constructs. McCarthy (1979), in her original work, had similar findings. The apparent indication is that the tool needs further refinement. On the other hand, if one feels, as Neimeyer (1973) does, that the psychological need to communicate and the urge to socialize are almost identical, it may be more important to develop a good psychosocial scale and not be concerned about the separation of the constructs. At any rate, these areas are closely related and the nurse must be cognizant of their interrelatedness during any assessment and intervention. A) There is a statistically significant difference in psychological impact scores between patient and family member for those with moderate hearing loss but not mild loss. it would seem logical to have a greater degree of handicap with a higher level of hearing loss. However, it is the relative who sees it that way and not the patient. This may indicate that patients are 1A8 not admitting their problems just as the relatives say they are not admitting the hearing loss. McDavis (1983) did find denial peaked in the moderate hearing loss group and attributed this to the impact of the deficit becoming more threatening at this level. Or, it may mean the relative is reading more into the problem than is actually there because it is difficult to know how someone else is feeling. No significant differences were noted in social scores, possibly because of the proportion of participants with high levels of social activity and the idea, as stated before, that hearing loss does not interfere with social activity as much as its enjoyment. This discrepancy between patient and relatives in perception of psychological impact supports the need to assess the whole family and provide the needed education and counseling because patients are going to have to live with the perceptions of those close to them. It is also imperative for a counselor not to ignore or alienate family members if there is to be progress made in resolution of conflict. 5) As health status declines, family members report an increase in perceived social impairment of their hearing Impaired elderly relative. This finding seems to imply that social interaction is more a function of overall health status than hearing loss itself. it is understandable that such conditions as arthritis, congestive heart failure, or chronic lung disease would limit one's ability to get out 1A9 more than hearing loss would. This idea is further supported by the fact that there was no significant correlation between degree of hearing loss and social activity in the study. Weinstein 8 Ventry (1982) also found little relationship between hearing loss and social activity measured in number of social interactions. This led them to conclude that hearing loss interfered more with Satisfaction than participation. A major implication is to include satisfaction as well as participation in social activities in assessing impact of hearing loss. This suggestion is based not only on the study results but also on Caplan's theory that support or intervention offered must be pertinent to each patient's needs in a particular situation. Another implication is the need to become even more creative in dealing with social needs of those with both chronic systemic disease and hearing loss. This type of strategy is grounded in Roy's Adaptation Model in which the author stresses consideration of extenuating circumstances and background factors as well as presenting problems. Sgggestions for Further Research Information related to the impact of hearing loss on life style would be helpful not only to the nursing and audiology professions but to other health disciplines such as physicians, nutritionists, and social workers who must interview and treat elderly people who cannot hear. Further research into the psychosocial impact of hearing loss is important to develop principles of approaching the hearing impaired and their families and promoting positive adaptation 150 to the sensory deficit. Because this subject is just beginning to be explored, there is tremendous opportunity for research in this field. I) 2) 3) A) S) 6) 7) 8) A few recommendations are listed below: Exploratory studies to gain a more comprehensive view of patients' concerns and frustrations and a knowledge of the kinds of support they find most helpful AsSessment of family members' concerns and frustrations in dealing with a hearing impaired elderly relative improvement and revision of scales to develop a short but reliable and valid tool to determine psychosocial perceptions of patients and families Exploration of differences between social activity and social enjoyment and the relationship to hearing loss Studies of differences between self-perceived hearing loss and audimetrically determined hearing loss, taking speech discrimination as well as pure tone average into account Assessment of patient and family perceptions in those who have not sought audiological care Analysis of relationships of level of hearing loss to social activity and health status Assessment of the incidence of severe hearing loss among the elderly and comparison of their perception of psychosocial impact with those who have mild and moderate losses 151 Summary interpretations of the research findings were discussed in Chapter VI. implications for nursing practice were presented in relation to the Roy Adaptation Model, ideas were presented for nursing and community education, and suggestions offered for further research. 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Hearing aid orientation and counseling. In M.C. Pollack (Ed.), Amplification for the hearingyimpaired (PP. 323-372). New York: Grune and Stratton. Schlossberg, N.K. (1981). A Model for analyzing human adaptation to transition. The Counseliogyfsychologist,.9(2), 2-18. Schow, R.L., 8 Nerbonne, M.A. (1976). Assessment of hearing handicap by nursing home residents and staff. Laboratory Research Reports, idaho State University. Schow, R.L., 8 Nerbonne, M.A. (1980). Hearing handicap and Denver scale: Applications, categories, interpretations. The Journal of the Academy of Rehabilitative Audiology, i3(2), 66-77. Schow, R.L., 8 Nerbonne, M.A.‘i1982). Communication screening profile: Use with elderly clients. Ear and Hearing, 3(3), 135-1A7. Schultz, R. (1982). Emotionality and aging: A theoretical and empirical analysis. Journal of Gerontology, 31, A2-51. Siemaszko, M. (1980). Kin relationships of the aged: Possible consequenses to social science planning. in C.L. Fry (Ed.), Agipgyin culture and society: Comparative viewpoints and strategies (pp. 253-271). Brooklyn: J.F. Bergin. Stephens, E.D.G. (1980). Evaluating the problems of the hearing impaired. Audiolo , i2, 20A-219. 162 Stream, R.W., 8 Stream, K.S. (1980). Focusing on the hearing needs of the elderly. The Journal of the Academy of Rehabilitative Audiolo , i3(2), 10A-108. Tannahill, J.C. (1979, February). The hearing handicap scale as a measure of hearing aid benefit. Journal of Speech and Hearing Disorders, Afl, 91-99- Taylor, 1.0., 8 Irwin, J. (1978). Some audiological aspects of diabetes mellitus. The Journal of Laryngology and Otology, 22, 99-113. Thomas, A., 8 Herbst, K.C. (1980). Social and psychological implications of acquired deafness for adults of employment age. British Journal of Audiolo , i5, 76-85. Thomas, P.D., Hunt, W.D., Garry, P.J., Hood, R.B., Goodwin, J.M., 8 Goodwin, J.S. (1983). Hearing acuity in a healthy elderly population: Effects on emotional, cognitive, and social status. Journal of Gerontology, 3§(3), 321-325. Thompson, J.M., 8 Bowers, A.C. (1980). Clinical manual of health assessment. St. Louis: C.V. Mosby Company. Tyler, R.S., Baker, L.J., 8 Armstrong-Bednall, G. (1983). Difficulties experienced by hearing-aid candidates and hearing-aid users. British Journal of Audiology, i1, 191-201. Ventry, i.M., 8 Weinstein, B.E. (1982). The hearing handicap inventory for the elderly: A new tool. Ear and Heariog, 3(3), 128-133. Wagner, P. (1976). Testing the adaptation model in practice. Nursing Outlook, 3A, 682-685. 163 Ward, P.R., Tudor, C.A., 8 Gowers, J.J. (1978). Evaluation of follow-up services for elderly people prescribed hearing aids: Report of a pilot project. British Journal of Audiology, i3, 127-13A. Weinstein, B.E., 8 Ventry, i.M. (1982). Hearing impairment and social isolation in the elderly. Journal of Speech and Hearipg Research, 3S, 593-599- Weinstein, B.E., 8 Ventry, I.H. (1983a). Audiologic correlates of hearing handicap in the elderly. Journal of Speech and Heagiog Research, gé, 1A8-151. Weinstein, B.E., 8 Ventry, i.M. (1983b). Audiometric correlates of the hearing handicap inventory for the elderly. Journal of Speech and HearingDisorders, AS, 379-38A. Wortman, C.B. (198A, May 15). Social support and the cancer patient: Conceptual and methodological issues (supplement). Cancer, £3110): 2339'2359 o APPENDICES APPENDIX A Permission to Use instrument 307 Kenway Drive Lansing, Mi 48917 October 30, 1983 Speech & Hearing Dept. Porter Memorial Hospital Denver, Co 80210 Dear Dr. Alpiner: I am a graduate student in the new program for gerontological clinical nurse specialists at Michigan State University and interested in doing my thesis in geriatric audiology, particularly in the area of family perceptions about hearing loss in the elderly. I am especially interested in this problem because it is one that has long been neglected in nursing and yet is such a great problem for the aged, not only in numbers affected but in impact on quality of life. With your permission I would like to use the M-A Scale with the family member and adapt that same format for the patient so that items would be comparable in number and in content. This would give me information on how different the patient and family perceptions were and in what specific areas. This, then, is useful for nursing in counseling families (and patients) who are dealing with hearing loss. 1 plan to work with a population referred by audiologists so that I also have accurate audiometric data for correlation. There will be a socio-demographic instrument which will include information about type and degree of social activity and patient’s perception of general health status. If you have any advice or suggestions about the study, the scale, or the population 1 would welcome them. i would also appreciate any information or bibliography about other research that has already been done using the M-A Scale. Thank you for your time and consideration in this matter. Sincerely yours, 6(afy 7LAJJCLLI Kay Thiede 6:01:14 PORTER 2525 50th Downing Street MEMORIAL °°"“"°i’s'337‘%‘%£?3;2 . 10 S P ITA L‘ November 15, 1983 Ms. Kay M. Thiede 307 Kenway Drive Lansing, MI 48917 Dear Ms. Thiede: thank you for your letter requesting permission to use the M/A Scale. Your project sounds exciting and I would look forward to receiving any results you obtain. You have my permission to utilize the scale as requested; we ask that you give appropriate reference for it. The most recent information about the scale, with appropriate references. can be found in: I) Handbook of Adult Rehabilitive Audiology. Williams and Wilkins Co., Baltimore. 1982. 2) Journal of Academy of Rehabilitive Audiolog; with Patricia McCarthy, January, 1984 (to be published). . I hope that this information is helpful to you. Please do not hesitate to contact me if you have additional questions. Sinjprely, Jerome G. Alpiner, Ph.D. Director Speech and Hearing Department JAzjw APPENDIX 8 Permission to Use illustrations 30? henmai Drlvé Lansing, Mi 43917 April 14, 1535 3831 Northwest 35 t l Gainesullle, Fl 32601 Dear Dr. Malasanos: As a graduate student in the Gerontological Clinical Nurse Specialist Program at Michigan State University I am completing my master’s thesis entitled Perception of Psychological and Social Impgct of Hearing Loss as Reported by the Elderly and a Family Member. I am including a section on physiology of the ear to which I would like to add a diagram of basic anatomy. It was suggested by my committee members that a commercial copy would be more professional in the thesis text than a hand drawn diagram. 1 had written to C.V. Mosby Co. for permission to use a diagram I had seen in Medical-Surgical Nursing, Phipps, Long, a woods, editors. The publishing company informed me that the diagram was originally produced in your publication, Health Assessment and that I had their permission to reproduce the diagram if I also obtained permission from you as senior author, and, of course, gave credit to your publication under the legend. Thus, I am requesting your permission to reproduce this diagram in my thesis text. Thank you for you conside ation in this matter. Sincerely, x/Q’j II)?- \//’(4;‘. 011) Ray M. Thieoe, R.H. X MOSBY TTDVHEES “MHFQTQCJF? THE C.V. MOSBY COMPANY ' 11880 WESTLINE iNOUSTfliAL DRIVE. ST. LOUIS. MISSOURI 88141» 314 072-8370 ' TELEX 44-2402 April 9, 1985 Kay M. Thlede, R.H. 307 Kenway Drive Lansing, Ml 48917 Dear Ms. Thlede: Re: Attached request Permission is granted to reproduce the drawing on p. 848 of Phipps, Long and Woods, editors: Medical-surgical nursing, 1983, originally published in Malasanos et al.'s Health assessment, (another Mosby pub- lication) provided approval also is obtained from the senior author of Health assessment, whose address is given below, and the following credit line to the original source of publication is included at the end of the legend: Reproduced by permission from Malasanos, Lois, Barkauskas, Violet, Moss, Muriel, and Stoltenberg- Allen, Kathryn: Health assessment, ed. 2, St. Louis, 1981, The C. V. Mosby Co. Best wishes. Sincerely, THE . V. MOSBY COMPANY Anastasia Broderick Manager, Library Services and Permissions ABzmn . Attachment c Lois Malasanos 3821 Northwest e Gainesvllle, DVHDESEPV AYRAOCYION OF “mg-«NC CKCELLENCE THE UNIVERSITY OF TEXAS AT AUSTIN AUSTIN, TEXAS 787 [2 Delmruwem a] S peed; Commuukalian Program in Comannirau'on Ditorlrn April 29 ’ l 98 5 512—471-3841 I Kay H. Thiede, R.N. 307 Kenway Drive Lansing, Michigan “8917 Dear Hs. Thiede: Your letter of the Quth just arrived. I am pleased that you wish to copy a figure from my book and am glad to authorize you to do so. However, the copyright is held by Prentice-Hall and you will need to get their written permission as well. Ybu can write to them at Englewood Cliffs, New Jersey 07632. Good luck with your thesis. Yours is an interesting topic and I hope you find it rewarding. Sincerely, Fredggzck N. Martin, Ph.D. Lillie Hage Jamail Centennial Professor FNM/mrv Prentice-Ha“, Inc. Eu"¢'OOJ C'i“., ".1. 07632 To'as No. 13-5‘23 May 16,1985 Kay H. Thiede, R.H. 307 Kenwuy Drive Lansing, MI b89l7 Dear fis. Thiede: reproduce He are very glad to give you permission to ggggg from our book(s), INTRODUCTION TO AUDIOLOGY, by- Martin, in accordance with the conditions outlined in your letter of 5/7/35 Please give credit to the author(s), the title(s), and the publisher with copyright year date(s). Our usual credit line appears below: Frederick H. Martin, INTRODUCTION TO AUDIOLOGY,1I 1981,p.271. Reproduced by permission of Prentice-Hall, lnc., Englewood Cliffs; New Jersey. Sincerely, HMM‘ *ohMQ . Marjory H. Mooney Asst. Permissions Editor snrnnas The illustration appears in the 2nd edition. He would rather you use that reference in the credit. XV’ (II B A P H A R IIAA C E U 1'I C A L (II) M P A N Y Mosaic-a ll (Jul-CHIC, “dynasties: 14 Henderson Drive SUMMIT, mm was” 0190: West Caldwell . N.J. 07006 Phone: (201) 575-6510 July 15, 1985 Ha. Kay N. Thiede, R.N. 307 Kenway Drive Lansing, MI 68917 Dear Na. Ihiede: Thank you for writing us about using an'illustration from CLINICAL SYMPOSIA, Volume 22, Number 2, Otologic Diagnosis and Treatment of Deafness in a thesis you are preparing. You have our permission to reproduce the illustration listed in your letter providing the thesis will not be published. Please be sure that the c CIBA, artist's signature, and the following credit line appear with the illustration: 5 Copyright 1970 CIBA Pharmaceutical Company, Division of CIBA-CEICY rporation. Reprinted with permission from CLINICAL SYMPOSIA, illustrated by Frank H. Netter, ".0. All rights reserved. This permission is for this one time only. If you plan to publish the thesis at a later date, please write to us again. Our permissions policy requires that reproduction material be obtained from us for publication. Good luck with your thesis. Sincerely, ’/ , Shirley Kiefer Permission Editor XVI APPENDIX C Clinic Supervisor Approval CLINIC SUPERVISOR APPROUAL Dear .A)¢) vzilgpbhxaa : This letter is a verification of our earlier discussion about collecting data on psychological and social impact of hearing loss in the elderly from eligible clients seen at your clinic. The data will be collected by mailed survey questionnaires after receipt of the client’s permission to release to me his/her name, telephone number, and access to clinic records. I would ask that you initially approach the client to obtain this release. However, further contact and follow up connected with this research will be done by me according to the procedures described in the thesis proposal which you have read. Client confidentiality will be maintained by computer processing of informaton and reporting findings in group form only. I appreciate very much your willingness to assist me with this research project. If you have questions or concerns during the course of the data collection, please feel free to contact me at 323-9112. SincereIY. 'l’wy n7. 7W . Kay M. Thiede, R.N. Gerontological Clinical Nurse Specialist Program Michigan State University (Signature of Audiologist/Clinic Coordinator) 7-29-ir’ (Date) xviii APPENDIX D UCRIHS Approval MICHIGAN STATE UNIVERSITY umvrxsn‘v COMMI'ITFJ-i 0N Inseam! mvmvmc tas'r mama - mCliIGAN - «I14 HUMAN SUthCTS (ucumsi I” AIIMINISII'NA‘I KIN ”UN DING oniurnw. . December A, l98h HS. Kay H. Thiede 307 Kenway Drive . Lansing, Michigan h89l7 Dear Hs. Thiede: Subject: Proposal Entitled, “The Social and Emotional Impact of Hearing Loss in the Elderly" UCRIHS review of the above referenced project has now been completed. I am pleased to advise that the rights and welfare of the human subjects appear to be adequately protected and the Committee, therefore, approved this project at its meeting on December 3, I984. You are reminded that UCRIHS approval is valid for one calendar year. If you plan to continue this project beyond one year, please make provisions for obtaining appropriate UCRIHS approval prior to December 3, l985. Any changes in procedures involving human subjects must be reviewed by the UCRIHS prior to initiation of the change. UCRIHS must also be notified promptly of any problems (unexpected side effects, complaints, etc.) involving human subjects during the course of the work. Thank you for bringing this project to our attention. If we can be of any future help, please do not hesitate to let us know. Sincerely, Henry E. Bredeck Chairman, UCRIHS HEB/jms cc: Dr. Barbara Given xxi APPENDIX E Original McCarthy-Alpiner Scale of Hearing Handicap Form B TI'IE MARTIN-ALPINE! “ALE OF HEARING HANDICAP (THE “-A 86“ by Palrlcla McCarthy. Ph.0.. ILA. Iedlcal Center. No. mileage. Illinois and Jerome o. Alplner, PM” The Unlverslty ot ”lulaelppl. Universlty. US . FORM 8 . NAME: DATE: AGE: SEX: PHONE: asunowsmr TO HEARING wuneo unmount- 00 YOU HAVE A HEARING LOSS? YES . JIO ointcnous ThidowhgmnsmewlbemedbhebwddoghlsmwmlhhbMeambu. Amtwolyoulamlyhssahemhgbes.Wearehterestedhlndngoutwhslellectslhehesnngloeshss hedonhblobJIslarnllyandlheaocldsspectsolhlslle. Youtsakleloglve'youressllonloeechollheslaternsntshcludedhlhemeameJhemeI mummolhhewmbsammhe-hgmedbflymdwmbmhwh mwmwededlwnhtheseaspeclsolflslle.Forexample.youmlohtbeglvenbleststement; Peoplelendlosvoldl'wnbecsuseollisheamgloss. Youareashadtonmrliyoureectlonloeechollhsstalamentsaslepplesloyouhsarmhmslredlenly mentor. Pleas'epulariXonlheeppropdsteapeoe. Plessemsrlieverylemwllhoiyomarwweraaseenh theeammple. hnmrkhgyouanewer, pleasekeephmlndtlmlALWAYSmemustaltlnesormaloweelons. USUALLY relers lo generally. commonly or ordhsrly. SOMETIMES means occselormly or on various occasions. RARELY refers to seldom or wrequently. NEVER meansnol ever or at no line. ' it your lsmlly member Is not presently employed. please respond “NM“ lor not applceble. ”mmwhumammmwmmlommmmwwnhmto lmveshearhglossandlheelleclsthehearhgloeshssononemlle WIOBObyP.MOCanhyandJ.Alplner xxii 10. ll. i2. l3. l4. Hogolaumyedwhenpeopledonolaoeekloudenoughlorlwntoheerllmm. ALWAYS USUALLY . SOAETIMES RARELY NEVER HegelsupeetllhecwlnolhearorundersImdsoomerssIlon. . ALWAYS USUALLY SOMETIMES RARELY ' NEVER Heleolslkehelslsolsledlrornllfligabecauseolhlahearhgloss. ALWAYS '. USUALLY SOMETIMES ' RARELY NEVER Heleolsnegsllveaboulllehgenerdbecauseolhlshesrhgloss. ALWAYS USUALLY SOMETIMES ' RARELY NEVER Headmilsllmthehesahearhglosalomoalpeople. ALWAYS USUALLY SOMETIMES RARELY NEVER He gets upsetwhen he leeis peopl'e we “finnmbhg ALWAYS USUALLY SOMETIMES RARELY NEVER Heieelsverylruslrsledwhenhecannolmdarstandaconverastlon. ALWAYS ' usuuiv SOMETIMES mew NEVER Heleelsttetéeoplehgeneralmderstwrdwhathtlreloheveaheutubss. *-—_—_——* ALWAYS USUALLY SOMETIMES RARELY NEVER Hlshearhgloeahssallecledhlsllehoeneral. ALWAYS usuaux memes may ‘ NEVER thbalraldhlpeoplewlnotlrehknltheyllndommalhehsaaheuhgbss. ALWAYS USUALLY SOMETIMES mew . w NEVER Helondsioavoldpeoolebecsuaeolhlshesrhgloaa. —-—————————————-——~———-—————-’ ALWAYS . USUALLY SOMETIMES RARELY ,. NEVER TholamelapaIleanlIhhlmwhonhecannoIhear. flwflm“ ———-——-——*—~ xxiii 16. '18. '17. 18. 19. 20. 21. 22. . .23. 24. 25. 26. 27. 28. Heasksapersonlorepeatllhedoeenolhearorunderstmdwlmllssald. - ALWAYS USUALLY SOMETIMES RARELY Hls hearing loss has allecledhls «th VIlIh N: m. ALWAYS USUALLY SOMETIMES RARELY He does not go places wllhlhe lamlly because o_l his heuhg loss. ALWAYS USUALLY SOMETIMES ' MWMOMWWOIMWW. ALWAYS USUALLY SOMETIMES RARELY Peoplehgeneralaretoletsntolhishearmloes. ALWAYS USUALLY SOMETIMES RARELY Hoavoldsgolnglomovlesorphysbecausoolhlshearhbloes.. ALWAYS swarms Heavoldsgolngloresiannlsbecaueolflshearmhs. ALWAYS usUALLY ' SOMETIMES NAnELY Heedoyssoclalslhmllonswllhconslderablecmverasllon. ALWAYS USUALLY SOMETIMES RARELY He Is not Interesmd In group activities because olhls heemc loss. ALWAYS USUALLY SOMETIMES RARELY ' Hoemoysgroupdlscmslormoventhoughhehssshmigloss. W USUALLY SOMETIMES RARELY '-.HIS hearing loss has lnIerlered with his job podormanoe. W W W5 RARELY Hecannolperlonnhlalobwelbecameoihlsheuhglosa. HI: coworkersknowwhslltlslike Iohavea hearingloss. W W W W Helrbslofldehhheuhglosslromflsco-workers. W W W W xxiv —”_ mfl* NEVER NEVER ' so. 31. 32. 33. 34. Hedoesnolenloygolngtoworkbecsuaeolhlshesrmlosa. ALWAYS USUALLY SOMETIMES RARELY NEVER Holéglvencrodlllordolnoagoodlobslworkevenlhough hehesahearlngloss. ALWAYS USUALLY SOMETIMES RARELY He tools more presswe at work because ol hls hearing loss. ALWAYS USUALLY SOMETIMES ' RARELY Hlsemployerunderslandswhslltlsllketohevealmsrhgloss. ALWAYS USUALLY SWETIMES 'RARELY He tries Iohldo his hearing loaelromhlaomployer. ALWAYS USUALLY SOMETIMES RARELY A the coworkers sposkloudly and clearly. ALWAYS USUALLY SOMETIMES RARELY XXV NEVER NEVER NEVER NEVER NEVER APPENDIX F Consent Forms RELEASE OF INFORMATION AT CLINIC SITE I am a graduate student in the Gerontological (study of aging) Clinical Nurse Specialist Program at Michigan State University and plan to do research on how older people and their families feel about the effects of hearing loss. The purpose of this study is to compare patient and family perceptions about hearing loss so that nurses will be able to provide the most relevant information and appropriate counseling to both patients and their families. The information for this study will be gathered in the form of two short questionnaires for both the patient and for a close family member. The questionnaires should take less than one half hour to complete. The information you supply will be kept confidential as the answers are processed by computer and only reported in group form. If you would be willing to answer a questionnaire (l/2 hour of your time), please tell the audiologist, , who will give me your telephone number and have you sign a release of information to give me access to your clinic records. I will then contact you within the next two to four months to give you more information and answer your questions. Questionnaires will sent by mail after you confirm interest in participating. Thank you very much for your consideration of this project. Your help will be greatly appreciated. ' Sincerely, wa m". 7M) Kay M. Thiede, RN Clinical Nurse Specialist Graduate Student I authorize and , H.A. CCC-A to release my name, telephone number, and clinic records to Kay Thiede so that i may be contacted for further discussion of the research study. (Signature) (Date) (Telephone Number) xxvi CONSENT FORM (Participant) order for you to understand your rights as a participant in a research study and to insure confidentiality, It is Important that you understand and agree to the following points: I) 2) 3) 4) 5) 6) 7) I freely consent to participate in a study conducted by a grad- uate student in the Gerontological Clinical Nurse Specialist Program in the College of Nursing, Michigan State University. I have read the cover letter and understand what my participa- tion in the study will involve. I am free to withdraw from the study at any time even though I had earlier consented to participate, and withdrawal will in no way affect my services at the clinic. I understand that the results of the study will remain confiden- tial and any publication of results will be done in group form and my name will remain anonymous. Also I understand that my answers on the questionnaire will not be made known to my relative who is also participating in this study. I give my consent to allow the research investigator to review my record at the (Clinic). I understand that my agreement to participate in the study will not affect my services at the 7 Clinic. I understand that I will not be paid for participation in the study, but that results of the study will be made available upon request to the investigator. ’(signiture of participant) (date) If you wish to have information on results of the study, please fill in your name and address below. xxvii 307 Kenway Drive Lansing, Mi. 48917 Dear , I am contacting you because at one of your visits to clinic you indicated an interest in participating in the study about how older people and their families feel about he impact of hearing loss. I would formally like to invite you and a close family member to participate in this study. what is required of you is to fill out two questionnaires. One contains 24 items about your background, general health, and hearing loss. (Most of these questions are designed so that you just have to check off an answer rather than write it out.) The other questionnaire has 24 brief statements about possible impact of hearing loss and you are asked to indicate how relavant each statement is to you. You should be able to complete these in 25 to 40 minutes. Enclosed in the packet with the questionnaires is a cover letter explaining directions and a consent form that must be signed and returned. In the family member’s packet there is also a statement of directions and a consent form to sign and return. Your relative will receive a 5-item questionnaire asking about extent of your hearing loss and frequency of his/her contact with you as well as a comparable form of the 24 statements about possible impact of hearing loss. These forms shouid take about 15 to 20 minutes to complete. Questionnaires will be mailed to you with a self-addressed stamped envelope for your convenience in returning the material. You are asked not to discuss your answers with your relative and the responses you indicate will not be made known to him or her. If your are interested in participating in the study, please fill in your name and address below and also the name, address, and phone number of a relative who can be contacted. Thank you very much for your willingness to consider participation in this research project. Your help is very much appreciated. Sincerely, M- 7M Kay M. Thiede, R.N. Graduate Program MSU College of Nursing xxix Please fill in and return in the enclosed envelope. (Your Name) (Street address) (City &Zip Code) XXX (Relative’s Name) (Street address) (City & Zip Code) (Telephone) APPENDIX G Questionnaire Packet--Participant Dear Participant, Thank you for your interest in this research project on the impact of hearing loss on older people. Your contribution will be helpful in increasing our understanding of how people and their families adjust to the problem of hearing impairment. Please read the followig information about the forms enclosed in this packet. I) CONSENT FORM-~Please read this form carefully so that you under- stand your rights as a participant in a research study, then sign and date this form. These forms will be filed separately so that your name will not be connected to any reports of this study. 2) SOCIODEHOGRAPHIC FORH--This form contains items about background information as well as some questions about your general health, use of hearing aid, and patterns of social activities. Host of these items have been written so that you just need to check an answer rather than write it out. 3) H-A SCALE--This questionnaire asks your opinion of the impact of hearing loss. Specific instructions are on the form. It is important that you give your opinion and not discuss answers with the fueily member filling out the other from. There are no ’right’ or ’wrong’ answers; the important information is your opinion and I would ask that you answer £11 of the questions to the best of your ability. The questionnaires should take about 30-40 minutes to complete. Uhen you have completed the forms, please mail them back alggg_gith the consent forms in the pre-addressed stamped envelope. I would ask that you return the completed forms within 10 day . If you are unable to do this or have questions about the project please feel free to call me at 323-9I12 . Thank you again for your participation and cooperation in this study.. Your time and interest are very much appreciated. Sincerely, Kay . Thiede, R.N. Gerontological Clinical Nurse Specialist Program Michigan State University xxxi SOCIO-DEMOGRAPHIC HEALTH HEARING LOSS PLEASE CHECK (OR “RITE IN IF INDICATED) THE APPROPRIATE ANSUER THAT FITS YOUR PARTICULAR SITUATION OR EXPERIENCE. I. SOCIO-DEHOGRAPHIC INFORMATION 1. Sex: (1) Male (2) ' Female 2. Age: (write in) 3. Marital status: (Check one) (I) ____ Married (2) ____ Single (3) ____, widowed (4) ____ Divorced (S) ____ Separated 4. Living situation: (Please check all that apply) (1) ____ Alone (2) ____ Uith spouse (3) ____ Uith adult child (4) ____, Uith brother or sister (5) _____ Uith friend (6) Other (Urite in) xxxii 5. Education: (Check one) (I) (2) (3) (4) (5) (6) College graduate Some college High school graduate Some high school Grade school graduate Less than 8th grade 6. Income: Total household income for the past 12 months. (Check one) (I) (2) (3) (4) (5) (6) so--4999 s4999-i4,999 s15,ooo-24,999 s25,ooo-34,999 s35,ooo-44,999 $45,000-above 7. Occupation or former occupation (Please write in) 8. Present employment status: (Please check all that apply) (I) (2) (3) (4) (5) Employed full time (Outside the home) Employed part time (Outside the home) Retired volunteer work Other (Urite in) xxxiii 9. II. Noise level (I) (2) (3) (4) (5) Is English (I) (2) How active in current or former work environment Constant loud noise Intermittant loud noise Moderately noisy background Fairly quiet conditions Comments: the first language you learned as a child? Yes No are you socially? Please check the activities you participate in at least two times a month. (I) (2) (3) (4) (5) Activities with a few friends Attend church, theater, concerts Attend social meeting such as lodges, work groups Eat in restaurants or group settings with family or friends Other (Please fill in) xxxiv 12. 13. GENERAL HEALTH How would you rate your overall health status? (I) ____ Very good (2) ____ Good (3) ____ Average (4) ____ Poor (5) Very poor Please check all of the following chronic conditions you are presently being treated for. (I) ____ Arthritis (2) ____ Cancer (3) ____ Chronic lung disease (4) ____ Diabetes (5) ____ Heart disease (6) ____ High blood pressure (7) ____ Eye problems _ (O) ____ Kidney disease (9) ____ Stroke (IO) ___ Other (List here) XXXV I4. Please list the names of any prescription medications you take regularly. (I) (2) (3) (4) (S) (6) I5. Please list the names of any over the counter medications you take (for example, aspirin, laxatives, cold remedies, antacids) (I) (2) (3) (4) (5) (6) III. HEARING L088 16. When did you first notice a hearing loss? (I) Months ago (Please fill in number of months) (2) Years ago (Please fill in number of years) (3) I don’t really feel I have a hearing loss. I7. How would you rate the degree of your hearing loss at the present time? (I) ____ Mild (2) ____ Moderate (3) ____ Severe (4) ____ No hearing loss xxxvi I9. 20. 21. "ha first suggested that you should have your hearing evaluated? (I) _ Self (2) __ Family (3) ____ Friend (5) ____ Doctor . (6) Other professional (Please fill in) In your opinion, has your hearing loss changed in the past 2 years? (I) Has become worse (2) Has improved (3) No change Do you own a hearing aid? (I) Yes (2) No (If answer is 'no' go to question 24) If 'yes', how long have you worn a hearing aid? (I) _____ Less than 6 months (2) ____ 6 months to I year (3) ____ I to 3 years (4) ____ More than 3 years xxxvii 22. 23. 24. How much do you wear the hearing aid? (Check answer that best describes your use of the hearing aid) (I) ____ All of the time I’m awake (2) _;__ Only when I watch TV (3) ____ Only when I go outside my home such as to church or to a res~ taurant (4) Seldom or never wear it How satisfied are you with the results of using your hearing aid? (I) ____ Very satisfied (2) ____ Some improvement in hearing ' (3) ____ No improvement in hearing with the aid (4) ____ Hearing aid is a bother and I don’t wear it Has your pattern of social activities changed in the past 2 years because of hearing loss? (I) Yes (2) ; No xxxviii 'THE NCGARTHY-ALPINER SCALE OF HEARING HANDICAP (THE M-A SCALE) (FORM TO BE FILLED OUT BY PARTICIPANT) DIRECTIONS The following questionnaire will be used to help the investigator understand what it is like to have a hearing loss. I am particularly interested in finding out what effects the hearing loss has had on your family and social life. Your task is to give your reaction to each of the statements included in the questionnaire. You are to answer how the hearing loss has affected these aspects of your life. For example, you might be given the statement: People tend to avoid me because of my hearing loss. AMYS USMLLY SMET INES RARELY NEVER You are asked to mark your reaction to each of the statements as it applies to you. Please put an 'X' in the appropriate space. Please mark every item with only one answer as seen in the example. In marking your answer, please keep in mind that ALNAYS means at all times or on all occasions. USUALLY refers to generally, commonly or ordinarily. SOMETIMES means occasionally or on various occasions. RARELY refers to seldom or infrequently. NEVER means not ever or at no time. All answers will be kept strictly confidential and only reported in group form for purposes of this study. Copyright I980 by Patricia McCarthy and Jerome G, Alpiner xxxix. I. I get annoyed when people do not speak loud enough for me to hear them. W 'W W W W 2. I get upset if I can not hear or understand a conversation. W W W? W —N—EV—ER_ 3. I feel like I am isolated from things because of my hearing loss. W W W W W 4. I feel negative about life in general because of my hearing loss. W‘ m m WG— W 5. I admit that I have a hearing loss to most people. W m W W —NE_V-E-R-— 6. I get upset when I feel peeple are 'mumbling'. W m W W TED—EE— 7. I feel very frustrated when I cannot understand a conversation. ALNAYS . USUALLY SOMETIMES RARELY NEVER 8. I feel that people in general understand what it is like to have a hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER 9. My hearing loss has affected my life in general. ALWAYS USUALLY SOMETIMES RARELY NEVER ID. I am afraid that people will not like me if they find out that I have a hearing loss. ALUAYS USUALLY SOIMETIMES RARELY NEVER II. I tend to avoid people because of my hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER 12. People act annoyed when I cannot understand what is being said in a group conversation. ALUAYS . USUALLY SOMETIMES RARELY NEVER I3. The family is patient with me when I cannot hear. ALHAYS USUALLY SOMETIMES RARELY NEVER xl I4. Family react rudely when I do not understand what they say. W.EW W W IS. I ask a person to repeat if I do not understand what is said. W W W W I6. My hearng loss has affected my relationship with my family. W W W W I7. I do not go places with the family because of my hearing loss. W m W W I8. Group discussions make me nervous because of my hearing loss. W m W W I9. People in general are tolerant of my hearing loss. m— m W W 20. I avoid going to movies or plays because of my hearing loss. Tum— W W W 21. I avoid going to restaurants because of my hearing loss. W m m —RTAR—EL—Y_ 22. I enjoy social situations with considerable conversation. ALUAYS USUALLY SOMETIMES RARELY NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER 23. I am not interested in group activities because of my hearing loss. ALUAYS USUALLY SOMETIMES RARELY 24. I enjoy group discussions even though I have a hearing loss. ALUAYS USUALLY SOMETIMES RARELY X] i NEVER. NEVER APPENDIX H Qustionnaire Packet-- Family Member Dear Family Member, Thank you for your interest in this research project on the impact of hearing loss on older people. Your contribution will be helpful in increasing our understanding of how people and their families adjust to the problem of hearing impairment. Please read the following information about the forms enclosed in this packet. I) CONSENT FORM--Please read this form carefully so that you under- stand your rights as a participant in a research study, then sign and date this form. These forms will be filed separately so that your name will not be connected to any reports of this study. . 2) EMILY MEMBER OUESTIMIRE-Jhis short questionnaire asks 5 questions about your relative’s hearing loss and your frequency of contact with that relative. These items have been written so that you just need to check an answer rather than write it out. 3) M-A SCALE--This form asks yourggginion of the impact of hearing loss on your relative participating in this study. Specific instructions are on the form. It is important that you give your opinion and not discuss answers with your relative filling out the other form. There are no ’right or ’wrong’ answers; the important information is your opinion and I would ask that you answer ‘51; of the questions to the best of your ability. The questionnaires should take about 15-20 minutes to complete. When you have completed the forms, please mail them back along with thegconsent forms in the pre-addressed stamped envelope. I would ask that you return the completed forms within IO days . If you are unable to do this or have questions about the project please feel free to call me at 323-9112 . Thank you again for your participation and cooperation in this study. Your time and interest are very much appreciated. Sincerely, Ya/y x27. 7M) Kay M. Thiede, R.N. Gerontological Clinical Nurse Specialist Program Michigan State University xl ii FAMILY MEMBER QUESTIONNAIRE Uhen did you first notice a hearing loss in the relative who is answer- ing the questionnaire in this study? (I) ____ Months ago (Please fill in number of months) (2) Years ago (Please fill in number of years) (3) . I do not feel he/she has a hearing loss How much does your relative in this study wear his/her hearing aid? (I) ____ Does not own a hearing aid (2) ____ All the time he/she is awake (3) ____ Only for TV (4) ____ Only when he/she goes outside the home such as to church or to a restaurant (5) Seldom or never wears it r Opinion has your relative’s hearing loss changed in the past In you _2 years? (I) ____ Has become worse (2) Has improved (3) ____ No change xliii How often do you have face-to-face contact with the relative in this study? (I) ____ Daily to once a week (2) ____ Ueekiy to once a month (3) ____ Once every I to 3 months (4) ____ Once every 3 to 6 months (5) Once every 6 months to once a year How often do you have telephone contact with the relative in this study? (I) ____ Daily to once a week (2) ____ weekly to once a month (3) ____ Once every I to 3 months (4) ____ Once every 3 to 6 months (5) ____ Once every 6 months to once a year (6) ____ None--No phone (7) ____ None--live in same household (8) None--relative can’t hear to use phone xliv THE McCARTHY-ALPINER SCALE OF HEARING HANDICAP (THE M-A SCALE) (FORM 78 9F FILLED OUT BY FAMILY MEMBER) DIRECTIONS The following questionnaire will be used to help the investigator understand what it is like to have a hearing loss. A member of your family has a hearing loss. I am interested in finding out what effects the hearing loss has had on his/her family and social life. Your task is to give your reaction to each of the statements included in the questionnaire. The items all concern the effects of the hearing loss on your hearing impaired family member. You are to answer how the hearing loss has affected him/her in these aspects of his/her life. For example, you might be given the statement: People tend to avoid him because of his hearing loss. ALHAYS USUALLY SOMETIMES RARELY NEVER You are asked to mark your reaction to each of the statements as it applies to your hearing impaired family member. Please put an 'X' in the appropriate space. Please mark every item with only one answer as seen in the example. In marking your answer, please keep in mind that ALUAYS means at all times or on all occasions. USUALLY refers to generally, commonly or ordinarily. SOMETIMES means occasionally or on various occasions. RARELY refers to seldom or infrequently. NEVER means not ever or at no time. All answers will be kept strictly confidential and only reported in group form for purposes of this study. Copyright 1980 by Patricia McCarthy and Jerome G, Alpiner xiv Please state your relationship to the family member completing the other form of this scale: I. He/She gets annoyed when people do not speak loud enough for him/her to hear them. ALUAYS USUALY SOMETIMES RARELY NEVER 2. He/She gets upset if he/she can not hear or understand a conversation. ALUAYS USUALLY SOMETIMES RARELY NEVER 3. He/She feels like he/she is isolated from things because of his/her hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER 4. He/She feels negative about life in general because of his/her hearing loss. W W W W —N-E-V_ER_ 5. He/She admits that he/she has a hearing loss to most people. W W W W W 6. He/She gets upset when he/she feels people are 'mumbling'. W m _ W W W 7. He/She feels very frustrated when he/she can not understand a conversation. 8. He/She feels that people in general understand what it is like to have a hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER 9. His/Her hearing loss has affected his/her life in general/ ALUAYS USUALLY SOMETIMES RARELY NEVER IO. He/She is afraid that people will not like him/her if they find out that he/she has a hearing loss. ALUAYS -U-SUALLY- SOMETIMES RARELY NEVER II. He/She tends to avoid people because of his/her hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER xlvi 12. People act annoyed when he/she cannot understand what is being said in a group conversation. ALUAYS ' USUALLY SOMETIMES RARELY NEVER I3. The family is patient with him/her when he/she cannot hear. ALUAYS USUALLY SOMETIMES RARELY NEVER I4. Family react rudely when he/she does not understand what they say. ALUAYS USUALLY SOMETIMES RARELY NEVER IS. He/She asks a person to repeat if he/she does not hear or understand what is said. ALUAYS USUALLY SOMETIMES RARELY NEVER I6. His/Her hearing loss has affected his/her relationship with his/her family. W W W W W I7. He/She does not go places with the family because of his/her hearing loss. W W W W 'Ticv—ER- 18. Group discussions make him/her nervous because of his/her hearing loss. W W W W W I9. People in general are tolerant of his/her hearing loss. W W W W W 20. He/She avoids going to movies or plays because of his/her hearing loss. W m W W m— 21. He/She avoids going to restaurants because of his/her hearing loss. W ' W W W W 22. He/She enjoys social situations with considerable conversation. ALNAYS USUALLY SOMETIMES RARELY NEVER 23. He/She is not interested in group activities because of his/her hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER 24. He/She enjoys group discussions even though he/she has a hearing loss. ALUAYS USUALLY SOMETIMES RARELY NEVER xlvii APPENDIX I Suggestions for Scale Revision I. II. 12. I6. 18. 20. 21. 22. 23. 24. ITEMS INCLUDED IN REVISED SCALE I get annoyed when people do not speak loud enough for me to hear them. I get upset if I cannot hear or understand a conversation. I feel like I am isolated from things because of my hearing loss. I feel negative about life in general because of my hearing loss. I get upset when I feel people are "mumbling.” i feel very frustrated when I cannot understand a conversation. My hearing loss has affected my life in general. I tend to avoid people because of my hearing loss. People act annoyed when I cannot understand what is being said in a group conversation. My hearing loss has affected my relationship with my family. Group discussions make me nervous because of my hearing loss. i avoid going to movies or plays because of my hearing loss. i avoid going to restaurants because of my hearing loss. I enjoy social situations with considerable conversation. I am not interested in group activities because of my hearing loss. I enjoy group discussions even though I have a hearing loss. xiviii