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JEA’Q-z - 0‘27- .‘ J .,f'/1,1 . n . 24.4.2: _- 5-:- .‘1 “Maia-[43¢ v' I .' 4—1944" 4 14% 10// LIBRARY Michigan State University This is to certify that the thesis entitled Maternal Perception of the Impact of Infant Home Monitoring on Sibling (age 2-5 yrs) Development presented by Diane M. White has been accepted towards fulfillment of the requirements for MSN degree in Nursing Major professor Date L] g )3? l I 0-7639 MS U is an Affirmative Action/Equal Opportunity Institution MSU LIBRARIES m V RETURNING MATERIALS: Place in book drop to remove this checkout from your record. FINES will be charged if book is returned after the date stamped below. MATERNAL PERCEPTIONS OF THE IMPACT OF INFANT HOME MONITORING ON SIBLING (AGE 2-5 YEARS) DEVELOPMENT by Diane M. Whlte A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE College of Nursing 1987 Al VI AI " V vi :3-I a lo . V I .' 3' s l {H'DQ U'U 5U In' ~‘ i'VU. ”v is: 3"] 3:5 . ”Crga: '53:: s— ABSTRACT MATERNAL PERCEPTIONS OF THE IMPACT OF INFANT HOME MONITORING ON SIBLING (AGE 2-5 YEARS) DEVELOPMENT By Diane M. White Using M. Rogers’ nursing model and McCubben and Patterson's modified family stress model, this study was designed to describe maternal perceptions concerning the impact of the infant home monitoring on the psychosocial and cognitive development of the two-to-flve—year-oid sibling. The Sibling Developmental issues tool was administered to a convenience sample of 22 mothers. Reliability coefficients of the study instrument were assessed to be acceptable. There were higher scores reported in the psychosocial area of development which includes: Aggression, Jealousy, regression, and anxiety. The scores reported in cognitive development (namely, exploratory behaviors, memory/language, fantasy/imagination) revealed little change. There was a significant difference In the regression subscaie between the younger age sibling (two years - three years six months) versus the older age siblings (three years eight months - five years). This information will aide in the understanding of sibling reaction to the home-monitored infant as perceived by the mother. in addition, strategies for nurses working with these families are presented. ohs Dr ling s This project IS dedicated to the 22 mothers, infants, and young siblings who were a part of this study. Acknowledgements Further acknowledgements are given to the following individuals who provided consistent encouragement and unending support. David White Kim, Kris, and Ron Judi Daniels O .5- Table of Contents List of Tables List of Figures CHAPTER.ONE introduction Statement of the Problem Definition of Concepts Purpose of Study Limitation of Study Assumptions of Study Overview of the Chapters CHAPTER TWO introduction Maternal Perception Toddler-Preschooler Development Effective of the Newborn on Toddler-Preschooler Sibling Sleep Apnea Home Monitoring Nursing Theory Conceptual Model CHAPTER THREE Review of the Literature introduction 14 15 16 17 19 19 20 28 37 39 4O 44 50 56 56 56 ENTER I Ovel Res: San; Ccer Varl Psic Viri COQn Sudden infant Death Syndrome - Infantile Apnea Summary of Research Studies Related to SIDS Sleep Apnea Apnea Monitor — Home Management Summary of Literature Related to Home Monitoring Well Siblings of Chronicaily ill Children Summary of Literature Review Related to the Siblings of Chronicaily Iii Children Effect of Sibling Birth on First-Born Child Summary of the Literature Review of Effect of Sibling Birth on First-Born Child Summary CHAPTER FOUR Overview Research Design Sample Operational Definition of Variables Variables Measuring the Dimension of Psychosocial Development Variables Measuring Dimensions of Cognitive Variable Moderating Variables Protection of Human Rights Research Instruments Reliability Validity Scoring Data Collection Procedures Data Analysis Procedures VI 56 59 59 60 65 66 78 81 87 88 90 90 91 91 92 94 95 96 98 99 100 103 105 106 109 r.- I! .i '- £5ummary 111 CHAPTER FIVE 113 [Data Presentation and Analysis 113 introduction 113 Results of Pilot Study 113 Descriptive Findings of the Study Sample 114 ‘ Sociodemographics of the Sample 114 Profile of the Mother, the infant, 127 and the Sibling Reliability of Sibling Developmental 128 issues Tool (SDIT) instrument (SDIT) Revisions 130 Analysis Pertinent to Study Questions 135 Correlations Among the Extraneous Variable 139 and the SDIT Other Findings 143 Summary 144 CHAPTER sux 145 Summary and Conclusions 145 Introduction 145 Sociodemographic Data 145 Summary of Sociodemographic Data 153 interpretation of the Major Research Findings 153 Mothers' Stress Level 159 Implications of the Research Findings 162 to Nursing Practice and Education Implications of the Research Findings . 171 to Nursing Research Recommendations for Future Research 175 Expanded Research 176 VII gnfl‘ Q '1' \ a - U RU ll Aiv O. A\ Experimental Research Conclusion APPENDICES Appendix A. Verification of Research Approval Appendix 8. Letter of introduction and Consent Forms Appendix C. Sociodemographic Questionnaire Appendix D. Sibling Developmental Issues Tool ' ($017) [69 Items] Revised Sibling Developmental issues Tool [26 Items] LIST OF REFERENCES VIII 177 177 180 184 189 195 201 204 In: In | hill in 1 Tail Table Table Table Table Table Table Table Table Table Table Table Table“ Table 11. '12. 13. List Of Tables Name of Sites Where Data was Collected and Number and Percentage of Subjects from each Site Age of the Mothers - Number and Percentage Mothers' Educational Level - Number and Percentage Ages, Number and Percentage of Children Living in the Home Age of infant When Placed on Monitor - Number and Percentage. Length Of Home Apnea MOI‘IItOI’II‘Ig - NUMDOI’ and Percentage Reported Stress Level of Mother - Number and Percentage Alpha Coefflflclents of the SDIT Pearson Product Correlations Between Subscaies of the Revised SDIT Mean Scores and Standard Deviations of SDIT (Sub) Scales Comparison of (Sub) Scales of STID Means and Levels of Significance by Age Groups Correlations Using the Pearson r Between Mothers' Stress Scores and the (SDIT) Scale Scores Correlations Between Length of Time on the Home Apnea Monitor and the Scale Scores IX 121 122 124 126 129 133 136 138 140 142 . we 'IJL'FI 4 5M#—_" FisaLsre F’Igtine FIslure F l gure Figure List of Figures Concept of Perception (Garner, Hake, Erikson) Rogers' (1981) Life Processes Modified ABCX Model (McCubbin a Patterson, 1983) Conceptual Model for Study Combining McCubbin a Patterson's Modified Family Stress Model and M. Rogers' Nursing Theory Conceptual Model 22 47 52 54 187 i'Eitiy Miilllgg icing 11 Care 1 Maternal Perceptions of The impact of infant Home Monitoring on Sibling Development CHAPTER ONE introduction in recent years the effort to gain knowledge and understanding of Sudden infant Death Syndrome (SIDS) has intensified. As Information began to emerge regarding the possibility Of a causal relationship between sleep apnea and SIDS, physicians and parents began to Del leve that home nusnltoring should be used (Vaides-Dapena, 1980). in an attempt tO prevent the protracted and complex mystery Of iSUdden infant Death Syndrome (SIDS), the number of infants D I aced on 24-hOUf' home MOI'I I tOf' SUI’VOI I lance has increased greatly over the past several years. in the Kalamazoo, Michigan, area alone, there are well over 100 infants who are being monitored for a potential life-threatening episode (Care Tech, 1986). The use of an apnea monitor In the home to limit the duration of apneic spells has raised a number of questions about the effect of such a device on the infant, the family, and parent-child interaction (Black, Hersher, & Stein- schneider, 1978). Four studies have been reported in the literature pertaining to the impact of the apnea monitor on the parents and on family life (Black, et al., 1978; Cain, Kelly, Shannon a O'Connell, 1978; DeMaggio & Sheetz, 1983; and Goetz, 1981). However, Investigations related to the '52‘1'651 3:»sic7 “a: as: 1*.‘nr Fa! a a ct: mtslde' he cnl $.1y b: fl'onic “Lustmi Mhling “SIUrb “3 sev ”0015“ Uhng a “VISID Ilian, “Sessmi 2 effeeczt such monitoring has on brothers and sisters of these Hrfasrats are absent. The American Academy of Pediatrics (1 978) stated that , in relation to the monitored Infant, the emot IOflflI and physical needs of siblings require comparable atrteention. Guntheroth (1982) stated that families, including sits! ings, should be evaluated and their strengths, weaknesses, resources, and needs assessed before monitor «dec:lsions are made and Implemented. Goetz (1981) recommended that more faml ly coping studies be conducted during the home monitoring period. Families are the consumers of health care. The presence <>f a chronically or terminally ill child in a family has been iconsldered a demanding, emotionally draining experience for the child and his/her family (Lavigne a Ryan, 1979). in a study by Lavigne and Ryan (1979), siblings of Children with a chronic Illness seemed more likely to experience more adjustment or behavioral problems than healthy children. The siblings appeared to be "at risk“ for certain types of disturbances at certain ages. It is interesting to note that the severity of Illness dld not correspond to the degree Of problems noted among siblings, but rather tO the illness being a visible handlcap—-e.g., plastic surgery versus an invisible handicap such as a congenital heart defect (Lavigne & Ryan, 1979). However, the effect Of Illness on the sibling IS certainly not well defined In the literature. Articles are promulgated that encourage family assessment and nursing intervention directed toward the 4.- ego-n; ’CS‘. 58 at? n 4 """ll U Via C) 3 pareerrts to assist them in coping, parenting, and learning or strengthening care-giving skills. Nursing has extended Its practice boundaries to include the family. Familiar terms SUCBFI as "family as a unit of care" and "family-centered care" permeate the nursing literature (Friedman, 198i; Hymovlch, 1979; Knafi 8. Grace. 1978; a Miller & Janosik, 1980). Often the faml ly includes only the parents of the well or iii crilld. DiMaggio and Sheetz (1983) have noted that the "Withers of apneic infants identify the nurse as being the most helpful to them during the infants' hospital stay. The major responsibility for the teaching of the faml l les preparing to monitor their infants in the home is assumed by the professional nurse. Observations of behavior, as well as parent reporting, are methods used in the study of young children. Behaviors 0f the two-to-five-year-old sibling that the mothers perceive to be attributed to the monitored infant experience will be described in this study. Many variables are present in the environment that WIII impact the child's development other than the monitored infant (i.e., divorce, poverty). However, the maternal perception of the effect of the monitor on the young sibling is the focus of this retrospective descriptive study. Furthermore. a knowledge Of perceptual theory is important for nurses to possess In order to assist the client in the identification and achievement of health-related goals (King, 1981). 4 Siblings are the forgotten ones, yet they are a vital par t, of the family system that nursing purports to address. It Is evident in the nursing literature that nursing practice nae; not yet begun to include the sibling (DiMaggio & Sheetz, 1983; Duncan & Webb, 1983;). The importance and Impact of the sibl lng bond--as well as sibling reactions and roles in imel lness, In situational and developmental crises, and in acnrte and chronic illness--requlres much more study and research. Only through this new knowledge of the effect of crises and Illness on sibling developmental patterns, will ‘tneanurse be able to use this knowledge to develop practice 'technlques. Not until nursing care encompasses the sibling, assisting siblings as well as parents to cope with the crises of family illness, will the words ”family-centered care" have true meaning, as the nurse responds tO QSSISt the total family unit toward optimal health. Statement of the Problem The goal of this study is to examine the relationship of the home-monitored infant tO the psychosocial and cognitive development of the slbling(s) (age 2 to 5 years) as perceived by the mother. The results of this study will assist in answering the following research questions: 1. According to maternal perceptions, how is psychosocial development of the sibling affected by the monitored infant as measured by sibling interaction, regressive behavior, aggressive behavior, and anxiety- stranger and separation? 5 2. According to maternal perceptions, how is cognitive development affected by the monitored infant as measured by expiorative behaviors, memory, and language development, and fantasy/Imagination? Definition of Concepts The following definitions of concepts will be used in trils study: Maternal is defined as the biological mother of the ir1fant or the mother who has legally adopted the infant. Maternal Perception is defined as the mother of the lrwfant and sibling and her representation of reality (King, ‘r98i). Perception Is a process of organizing, interpreting, arud transforming sensory data and memory (King, 1981). Specifically for this study, the term “perception“ will eru:ompass the mother's report of sibling behavior issues. Home—Apnea Monitoring will be defined as the use of a respiratory/heart rate monitor for 24-hour home surveillance ‘Df an infant who has experienced or is at risk for prolonged apnea and/or bradycard i a . Apnea-Monitored infant will be defined as an infant between newborn and one year of age who is being monitored at “We for life-threatening apnea and/or bradycardia, and was I“heed on the home monitor between newborn and six months of 819:3. Toddler-Preschooler Sibling WIII be defined as the brother or sister between the ages Of tWO and five years WhO lives in the home with the monitored infant. m ._._..._ fife; “4 6 Development issues will be defined as those psychosocial armlcognitlve developmental tasks that are characteristic of the toddler-preschooler stage of the life cycle. These developmental tasks can also occur in the development sequence in chi idren who do not necessarl Iy have any identified stressors such as an lii sibl ing or faml iy stress. The issues identified in the maternal survey will Include Specific areas of psychosocial and cognitive development. Psychosocial Development is defined as the process of social lzation and development of self-concept. The psychosocial area of development involves both the affective and the social domain. The affective domain encompasses the emotional aspect of self, which includes feeling, desire. values, motivation, aspiration, frustration, and Identifica- t Ion (Schuster, 1980). The chi id's internal response to the external environment is the major focus of affective growth. The social arena includes an lndlvidual's relationship with family, society, and culture. Communication styles, roles, ‘3°Plno behaviors, and interactional patterns are behaviors lnCIUded in the social aspect. In summary, the socialization (bf a Child Is concerned with the lndlvidual's overt response t“) the environment, Including interpersonal relationships (schuster, 1980). The subconcepts to be measured in the psychosocial area will be defined as fol lows in this study: Sibling interactions will be defined as those commlunlcatlon patterns used by the sibling to relate to the parents, other siblings, and the monitored infant. Communi- 7 cation within the family is a key element in the fulfillment of fwniiy goals, as well as a critical vehicle In binding the subsystems together to form a cohesive whole (Friedman, 1981). The family communication patterns within the system have a major effect, not only on the faml Iy, but on the individual members as well. Sibling interaction patterns comprise the ongoing communication methods which are used by ‘the sihiling. These patterns serve to influence the family members and produce the meaning to transactions between the family members. The researcher will report changes In sibling Interactional patterns with the faml iy members during the monitor period as reported by the mother. Egressive Behaviors will be defined as those behaviors vvhlch Indicate retreatment to a less mature state associated with an earlier developmental stage (Barker, Dembo, Lewin, 1976). Young children under stressful conditions often exPel'lence highly disorganized states, In that they lack retreat positions when a dominant behavior pattern is d|srUpted (Garmezy a Rutter, 1983). Adults experience an advantage from the progressive increase in the complexities ‘3‘ their bio-psychosocial and cognitive organization. Adults haVQ more complex levels of organization to fall back on when L"“3er stress. By contrast, young children have fewer options that wdli serve to maintain an organized behavioral state because their current levels of organization are built upon a Weaker and less complex developmental structure (Garmezy & Rutter, 1983). 8 The areas addressed in this study will be those most commonly observed by mothers of their two-to-five—year-old child in response to the monitored Infant. The areas where regression ls most apt to occur Include sleeping, eating, toiletlng, rituals, and other self-care skill behaviors. Aggressive Behaviors will be defined as those behaviors in which a kind of energy is built up within each person that must be periodically discharged (Montagu, 1976). The actual discharge of this bui it—up energy is the active behavior that will be measured as perceived by the mother. This may include forceful, attacking behavior either constructively as being self-assertive and protective, or destructiveiy as being hostile to others and to oneself. Learning how to handle frustration and aggression is one of the most crucial tasks of the toddler-preschooler during this time of deVPIODment. Aggressive impulses may occur as the chi Id exliel'lences some feeling of being thwarted. The toddler may become physically aggressive, frequently striking out at an adult or other object seen as the source of frustration. Tempe,- tantrums also are a toddler's method of dealing with 1””Ustratlng circumstances and can occur frequently in the tOddlgr age group. Verbal aggression becomes more prominent I" the preschool years as physical aggression decreases. When the child learns to control frustration through alter'native strategies, eventual iy the development of Internally moderated, mutually cooperative behaviors will oCCUr with other persons. The effect of the home-monitored 9 Infant on aggressive behaviors of the two-to-five-year-old sltHlng as perceived by the mother will be a part of the present study. Anxclety--Stranger and Separation. Stranger anxiety is defined as the tension felt by a young chi Id when introduced to an unfamiliar person (Searles 8. Ashburn, 1980). Separa- tion anxiety is defined as the fear experienced by a young cruld “Hwen he/she is removed from a familiar person, object, or environment (Bowiby, 1973). Since the child may display the same behaviors (l.e., screaming, withdrawing, and being uncooperative) when displaying either form of anxiety, it Is 'mDortant to differentiate between these two forms. Stranger anxiety begins in mldlnfancy (5-6 months), peaks in late Infancy and the early toddler years (12-18 months), and Gradual ly decreases. Because many Infants begin to exhibit he9atlvelresponses to strangers several months after specific attachments have occurred, it Is thought that the infant may "0 lOl'iger be able to predict the stranger's response as heIShe ls able to do with the attachment figure. Separation anxiety appears to peak when the child is t"'eglnnlng to feel secure in the ability to predict events (8‘10 months) and again when the abl i ity to control some events is realized. it Is impossible for a child to predict events when removed from familiar persons or surroundings (BOWiby, 1973). Children's reaction to a threatened or a real Separation depends on their age, stage of developmental fuhctioning, and quality of attachment. Events that separate 10 jyoung children from family members can create anger at being abandoned and fear that loved ones will not return (Brenner, 1984). (fl1lldren seem to experience psychological separation more deeply than they do physical distance from parents; however , every separation brings with it some form of change, paln,aand dislocation (Brenner, 1984). Responses to separa- tion start with some form of protest, which may include anger, anxiety, and denial (Bowlby, 1980). Following this response is a period of despair, sadness, withdrawal, and depressmn (Bowlby, 1980). Once the child reaches three to four Years of age, a mental representation of the loved one can be maintained, allowing the child to receive partial r-einhorcement from the mental images of the significant <3ther. An attempt to measure the effect of the home- monltored infant on separation and stranger anxiety as perceived by the mother will also be included in the study. (fignitlve Development is defined as the intel lectuai prOCesses Involved in thinking and memory. Intellect is a composite of skills, behaviors, and adaptive abilities that makes it possible for an Individual to adjust to new ‘3Ituatlons, to think creatively, and to profit from experiences (Pulaski, 1971). Creative activities are InVoived in the cognitive area as the child forms new Combinations of information in order to adapt to novel sItuatlons. . .2 11 Piaget‘s stages of cognitive development present a theory of ev0lvlng changes in chi ldren‘s abl l ity to solve problems (Piaget 8. lnheider, 1969). Cognitive development is viewed as a series of qualitative changes in a fixed order, although the timing and overlapping of cognitive growth stages ls unique to each chi Id. The stages of development of the chi Id age two to five years will also be discussed later in the text . The subconcepts to be measured In the cognitive section will be defined as follows: gplorinLBehavlors are defined as those behaviors involved in the act of investigation to acquire knowledge. During the second year, the child becomes capable of Incessant exploration of more aspects of the environment. Intense curiosity is one of the hallmarks of the child age two to five years. Over a short period, this age group DFOQFesses from a trial-and—error method of object manlpLIlatlon to a retention of mental images (Piaget a Innelder, 1969). Young children must manipulate new objects '” their search for new information. Skilled manual and visual exploration becomes '"creaalngly complex with age, but it is those very behaviors that allow learning to take place. it is from these explorations that thoughts arrive which help to form mental lmaQes. From these explorations, an abl l ity to problem-solve WIll emerge (Piaget 8. lnheider, 1969). The impact of the current crises of a home-monitored Infant on exploring 12 behaviors In the two-to-flve-year—oid sibling as perceived by the mother will be included in this investigation. Memory is defined as the ability to recall previously learned Information or past experiences and Is intimately related ‘to all cognitive processes (Kali, 1950). Piaget's preoperationai stage begins at approximately two years of age With the acquisition of symbol lc thought--the use of words and mental images to portray objects, actions, and events that are not present (Furth, 1969). Children begin to imitate, In some detail, objects or events that they have eXperlenced in the past. For Piaget, memory is in the broad sense identical with the organization In any scheme (Furth, 1969). F’laget considers three levels of memory: ( 1) Recognltlve memory based on perceptual schemes, which belongs to the sensory-motor stage of development; (2) flconstructive memory based on imitation, which belongs to the Representatlonai-preoperatlonal stage of development; and (3) evocative memory based on images which correspond to r'epresentatlonal, preoperational, and operational levels of ‘Cognltlon (Furth, 1969). Transformations of memory go hand "‘ hand with the acquisition of concrete operations. EnV'f'onment has a strong Influence on the intei lectuai deVQIOpment of the young child. The effect of the home- monItored Infant on memory development of the sibling (age two-to-five years) as perceived by the mother will be expiored in this studY- 13 Language Development is defined as the process by which the child develops the ability to communicate thoughts and feelings by verbal sounds. Piaget, who suggests that symbolic: life develops through Interaction with one's world, believes that this formation of symbols Is aided by the use of language. Piaget also proposes that the development of language and thought are parallel and it Is not until the Individual is seven or eight years old that language and thought: become closely interrelated (Piaget & lnheider, 1977). iDurIng Piaget's preoperational stage, the use of language continues to be egocentric. This is the time when 'the crilld is observed to engage In thinking aloud or talking to nun/herself. The importance of language development, according to Piaget and inheider (1977) is that the child learns to manipulate the symbols to understand the meanings 0* the objects and events. All four domains--blophyslcal, c°9n|tlve, affective, and soclai--contrlbute interdependently to the development of the ability to comprehend and use IanQuage (Grim, Goff, & Ashburn, 1980). An attempt to '“QQSUre the impact of the home-monitored Infant on the 'Pnouage acquisition of the two-to-flve-Year—old sibl lng as D"‘-"<=elved by the mother will also be explored in this study. Fantasy is defined as the act of imagining; a connected Serles of mental images, or mental play (Fraiburg, 1959). The preoperational child believes that his/her thoughts, geStures, and noises control the universe. Through the use 14 of fantasy or mental play, the chi id adapts to the fears, tensions, and anxieties he/she experiences about self and environment. From the beginning of toddlerhood, the egocentric chi id bel leves that his/her magical power of thought is the cause of all events (Schuster & Ashburn, 1980). Sometimes a child believes that his/her wishes actually caused some tragic event (Brenner, 1984). Daydreamlng is a form of mental fantasy and may begin during the preschool years. it can be a positive adaptive response to a stressful experience serving as a retreat or as entertainment to expand and understand one's world. The use of fantasy in the sibl lng (ages two-to-flve Years) of the hcDine—monitored Infant as perceived by the mother will be exlblored In this study. Purpose of Study Consequences of illness in a family are inevitable regardless of the age of the well sibling or the family structure. Lavigne and Ryan (1979) state that sibl lngs are L'33U'ooted and displaced as their Ill brother or sister assumes a more dependent role In the family. Siblings will react to CI“ I ses in the faml ly system and will manifest behaviors that ref iect the crises (Lavigne 8. Ryan, 1979). The purpose of this study is to describe the impact that the monitored Infant has upon cognitive and psychosocial development of young sibl lngs In the faml ly as reported by the mother. An increased understanding of mother's percep- tion of the young sibling's reaction to the home—monitored 15 Infant experience wl ii assist the nurse in the planning and implementation of Interventions that will enhance parental coping and sibling developmental progress. Limitation of Study A small convenience sample of 22 mothers of home- monitored infants, with young siblings ages two to five years, comprised the study subjects. in relation to this study, the following limitations have been identified by this researcher: 1. Due to small sample size and the convenience sample used In this study, the findings may not be generalizable to a larger population but only to the group of parents studied. 2. Due to the development of theparent perception tool by the researcher, rei iabiiity and validity will not have been established before use of the tool for the sibling study. 3. Maternal perceptions are not a direct measure of s'b I Ing development and are, therefore, biased by multiple ma‘ternal variables. 4. The researcher will not be assessing the mothers for c3":her major stressors in their lives that may also affect their perceptions of sibling behavior. 5. The mothers who participate in this study may have Characteristics that differ from those parents who refuse to pal"'tlcipate In the study; therefore, the sample may not be representative of all parents who have experienced infant home Monitoring . 16 6. The developmental level of the siblings will vary greatly depending on the chronological age and the matura— t tonal level of the child. Because of these wide variations, 3 i bl lngs between the ages of two and five years will be selected. it Is also likely that couples in the childrearing stage will have a greater number of siblings in this age group. 7. The effect of a newborn in the family will also cause behavioral disruption in the siblings. In two studies (Dunn and Kendrick, 1982; Lamb and Sutton-Smith, 1982), there were significant behavioral changes in the toddler age group I'fP-latlve to a newborn arrival . Because of the "newborn eFFect" In relation to the apnea-monitored infant, the tcdd Ier-preschooler reaction to a new sibling may be part of the behavioral change perceived by the mothers. 8. Due to the one-time measurement of maternal perception of their (two-to-five-Year-oid) child's development during the monitor period, the results of the stucy will find the families In varying phases of adjustment to the monitor situation. Therefore, a longitudinal c“elbictlon of the chi Id's development Is not the study focus, but rather the maternal perception of the sibling at the time of data collection. Assumptions of Study in this study, the Investigator makes the following as"S'J'T'libt ions: 17 1. Prolonged apnea will be viewed by the researcher as a chronic disease. 2. Mothers will perceive the home monitor as a st ressor. 3. Mothers will be willing to report developmental problems that indicate stress in the sibl lng subsystem. 4. Mothers will be able to perceive developmental patterns within the faml iy context pertaining to the two-to- f’ ive-year-oid sibling. 5. The level of sibling cognitive and psychosocial development strongly influences sibl Ing response to the home monitor experience. Overview of the Chapters This research study Is presented in its entirety in six chapters. in Chapter One, an introduction, statement of the Dr“zanttern of a family. According to Griffin (1980), illness r’eenwesents a change in one part of the family system which is f=<>liowed by a compensatory change in other parts. This would 'mbiy that the life pattern of the parents, as well as the 3 l bi lngs, is affected. Illness is not an isolated occurrance t’th rather an important event in the interaction between the l3er-sson and the environment. Each faml ly member will react to ' l Iness In a unique way, which will result in the evolution C>f new patterns--not only for the individual members but for the family as well. Maternal Perception King (1981) defines perception as a process of Or1ganizing, interpreting, and transforming information from sensory data and memory. Through perception, an individual 21 l nteracts with the environment. Perception gives meaning to one's experience, represents one's image of reality, and I nf' iuences one's behavior (King, 1981). Individuals will react to events in terms of their perception of them, since perception Is a person's portrayal of real lty. Perception can be conceived of as an intervening process between stimuli and response (Garner, Hake, Eriksen, 1974). St lmuli and responses can be directly observed; however, perception can be known only as a concept whose properties are induced from subjectively determined relations between St lmuli and responses (Garner et ai, 1974). (See Figure 1.) The concept of perception according to King (1981) has several characteristics. The first characteristic Is that perception is universal in that all persons perceive other i ncllvlduais and objects in the environment. These e>thers who are currently caring for an infant on a home n1c>nltor. Data concerning maternal perceptions of the (jeeveiopmentai Issues of the two to five year old sibling will t>ee aggregated and compared with the socio-demographlc Items V'ftlch define selected characteristics of the sample F><>Duiation. ittieson and Cantrell (1954) Identify the fourth crMaracteristlc of perception as transaction. The identity of the Individual will be affected by active participation in eVents and situations. Each mother who participates in this study will respond from her own position in time and space wl‘th her unique combination of experience and needs. Parenthood Is a major phase in the lives of many adults. parenting requires an intense, vigilant, personal reeiationshlp with continuous and complex interactions between parent and chi Id. Parents, as they care for and nurture tuneir offspring, are frequently able to detect growth and change in the child, no matter how subtle it may be. The 24 role of the parents in caring for an ill child is a major one. Many mothers remain in the home to care for their chronical iy iii chi id because they cannot find adequate chi id care, and are often too involved with the care required to be able to work outside the home. The degree and manner of faml ly burden will, of course, depend on the faml iy structure, family resources, and type of Illness involved. Social isolation, sleep interruptions for long continuing periods, and physical burdens such as complicated special regimes are all a part of the family changes required ( Travis, 1976). Chronic illness creates financial burdens as well, which seem to impact all areas of the budget from nutrition to a need for housing “adaptation (Travis, 1976). Relationships within the marital dyad and the family change with the arrival of an ill child. A recurring <1 l stortlon of relationships occurs when the mother's "Urturlng functions are heightened and the father's role mlnimlzed (Travis, 1976). This may result In an intense, C lose relationship between mother and chi id, with the father 1:eei ing left out of the newly formed dyad. The guilt of Darents in producing a "defective" child and the over- Drotection stemming from it are, so often described, as to Create a stereotype (Travis, 1976). Ambivalent feelings toward the ill chi id are frequent. Parents love but also resent the chi id for the burden imposed on themselves and the rest of the family. 25 Perception Is a very Important concept for nurses to develop, as it Is the basis for gathering and Interpreting I nformatlon (King, 1981). A nurse caring for chi idren and their families will quickly learn that parents‘ perception of their offspring is vital. The continuous nature of the parent—child relationship affords longitudinal observations and data that are crucial to the nursing assessment. Barr (1979) has described three phases that parents experience while adjusting to a home-monitored Infant. The f' I rst phase, labeled as the initial phase, consists of the f' Irst few days through several weeks at home. This initial phase is described as extremely stressful. Parents report being tense, tired, fearful, and depressed, with little energy or patience to deal with sibl lngs. The parents are suddenly placed in a‘ situation of expecting a medical emergency at any time. At this point, they real iy do not tr‘ust the monitor. They are not convinced that a simple nudge could start their baby breathing again, and they have ' lttle confidence in their ability to resuscitate the infant. Furthermore, It Is during this time that parents come to r‘eal Ize how restricting the monitor is. The dishwasher or Vacuum cannot be operated whi ie the Infant Is sleeping because It muffles the alarm. Going outside to get the mall 0r quickly chat with a neighbor, while the baby naps, Is not a safe practice. The entire household must be rearranged around the infant. At this DOIDt, MOSt parents are nervous 26 zatnd depressed. They wonder how they are going to get through this period. During the second phase, called the "adjustment period", ‘tiwe parents begin to learn to live with the device and all l‘tslprobiems. While some parents adjust quickly, others work ‘tiwrough the adjustment phase gradually. Parents state that 'ttney definitely have problems sleeping at first, but this lessens with time. Two reasons for the lack of sleep are nervousness and fear of not waking when the alarm sounds. in 'trwe beginning, the parents would not leave the monitor, but gradual iy they became more confident that the alarm would be zacztlvated If the infant stopped breathing (Barr, 1979). aAwfter several weeks, the parents were comfortable being In <>r1e room while the Infant slept in another; and they no l<>nger found It necessary to check the infant every few 'Tllnutes. The parents do become more relaxed In this period, t>LJt they do not negate the fact that there are still problems (Barr, 1979). Learning to live with the problems is the major aspect of this period--such as a 10-second distance from the alarm, arrangement of home for Immediate response. r1c>ise control, traveling with family, and mobilizing support salstems. Each family had to work out Its own solutions to tiwelr unique problems (Barr, 1979). Barr (1979) states, “the adjustment period is the time during which parents learn to I lve with all the problems that seem incredibly huge and unsoivabie during the initial phase" (p. 4) Parents have to 27 <:nsumes parental time and energy and Impacts the family LJr1lt, so will It affect the young siblings in the family. Fteasearch that addresses sibling impact during the monitor experience does not exist. One of the mothers quoted In BEirr's (1979) monitor guide for parents stated, "My other <3P1ildren drove me crazy, all i could think about was the baby ear": trying to cope with the others was just too much." (I). 3) The investigators Involved In the few studies about 'ttfie impact of the monitor on parents, (Black et al, 1978; Cain et al, 1980; DeMaggio et al, 1983; Goetz, 1981), mention tiwat sibling studies are needed to address the effect of this stressful period on the young siblings. it is important for the nurse to gain insight into perceptions of faml iy members. By understanding their 28 particular frame of reference, we will be able to plan more effective intervention strategies that will be mutually acceptable to both cl lent, family, and nurse (Hymovlch, 1979). This study, therefore, will seek to gather informa- t Ion concerning mothers' perceptions of the Impact of the monitored infant on their two—to-five-year-old child. The following section will discuss stress in the Young child as well as toddler-preschooler development. Toddler-Preschooler Development The focus on the family rather than solely on the III child generates from the belief that the child's Illness is a Faml ly's illness. The chi id's disability affects interaction I n the entire family (Azarnoff & Hardgrove, 1981). When a child becomes ill, it Is natural that family energy Is focused on the Iii or handicapped member. Health profes- s lonais, as well, attend to the needs of the patient, Forgetting that the well sibling will also be affected by the stl‘ess of this family experience. Stress is defined by Schneider (1984) as any stimulus r‘equlrlng an organism to adapt to that stimulus. McCubbln and Patterson (1983) define faml iy stress as a life event or transition Impacting upon the faml ly unit which produces, or has the potential of producing, change in the faml iy social System. Temporary behavioral dysfunction is commonly manifested In the two-to-five—year—oid chi Id as a typical coping reSiDonse to the stresses encountered along the developmental 29 <:ontlnuum. Coping encompasses the problem-solving efforts that individuals make when faced with the demands that are relevant to their well-being (Baumann, 1983). Murphy (1962) defines coping strategies as "the child's Individual patterning and timing of his resources for dealing with specific problems, needs or challenges." (p. 274) This Involves both efforts to manage the environment and the tension aroused by problems, needs or chai ienges (Murphy, 1962). Encountering some new or not-yet-mastered situation Initiates the process of coping (Bauman, 1983). Because each chi id copes differently with stressful experiences, personal lzed interventions are necessary. The coping process I s seen as consisting of both active efforts and defense methods. Once the chi Id learns methods of coping successfully in certain situations, the child may Integrate these solutions In other situations. The child displays Variations in coping strategies, depending on the degree of Dercelved threat of the problem, developmental level, age, previous experience, parental Involvement, and the chi Id's Unique coping repertoire (Bauman, 1983). Young children are often unable to verbalize their thoughts and feelings: therefore, certain behavioral observations are essential in assessing a chi Id's reaction to stress. Behavioral patterns may emerge, regress, and/or exaggerate as the chi id attempts to cope with the stressful environmental events. Any event may be considered disruptive 30 for the well sibling if It hampers mastery of growth and development skills. Most children encounter a considerable amount of stress In our complex society. A relatively scarce amount of liter- ature has been concerned directly with children’s response to stress (Humphrey, 1985). This degree of research neglect is puzzling In that chi idren are frequently among the most affected victims of a multitude of threatening events (Garmezy, 1983). One of the many problems of stress In children Is that they are not likely to be able to cope with it as adults do. They do not have the readl Iy aval iable options that the adult has. An Important home condition that‘can Induce stress In Children Is the experiencing of stress by the faml ly (Humphrey, 1985). When a child is III or handicapped, there are major shifts In family routines. Parents have less time ‘FOr healthy siblings and often expect more Independence from them. Youngsters worry that they have caused the illness or wl Ii catch it themselves. The healthy sibling often resents the energy and attention that parents afford the ill chi Id. A mixture of jealousy, anger, sadness, and fear is felt when Interacting with or thinking of the ill sibling. Children I‘nay express their distress through such behaviors as f lthlng, wetting the bed, being afraid to leave home, e>erlenclng headaches, stomachaches, or depression and doing 9001" iy In school (Humphrey, 1985). When the brother or S'Ster requires frequent hospitalization. the family 31 separations precipitate feelings of loss and fear of abandon- ment when any faml iy member is temporarily absent. in many cases, the disabled youngster remains at home and the separa- tion Is psychological rather than physical (Humphrey, 1985). Often the healthy sibling feels lonely and isolated from friends who misunderstand their "weird" sibling. Frequently it is the child who Is closest In age to the disabled sibling who Is most affected by the Illness (Travis, 1976). Common stressors in early development include parental restriction, punishment, prolonged depression, and occasional apathy (Garmezy, 1983). Humphrey (1985) states, that the objective of adults who deal with chi ldren under stress should be to reduce stress by making a change In their environment and/or assisting the chi Id to use positive coping measures. An effort to observe, record, and study the I'eactlons of childrento stress Is indeed a fruitful area for r‘esearch and one that nursing must address. What behaviors and responses might be observed in a child from two to five years who Is experiencing the traumatic scenario of an Infant sibl ing with an apnea monitor attached? According to Hymovich (1979), the abl l lty of each famllygmember and the faml Iy as a unit to cope with the problems of chronic Illness ls defined as their ability to accomplish the developmental tasks arising at each phase In the life cycle. It seems evident that one must use a developmental framework in the study of sibling impact. 32 The home and family unit is the main influence for the Individual age two to five years. Therefore, any disruption that causes separation and fear or a major change In family operation may cause some degree of anxiety. Some children develop self-protective or compensatory measures to cope with stress. Murphy (1976) studied the self-protective measures that assist the preschool chi id to cope, namely: The ability to facilitate resilience by timing and rest and the ability to limit excessive stimulation. Strategic withdrawal ls seen as an Important resource at a stage when mastery is limited. The child can Ilmlt the environmental input by the capacity for speedy orientation, "to use delay for appraisal" and to forestall danger by lmake things cooperatively, to combine with other children fcn purposes of constructing and planning (Erlkson, 1963), and yet may be rather shy and inept with peers. Communica- t:lon ls more sophisticated and incessant questioning related t1: "why" demonstrates the intense curiosity and boisterous tlehavlors of this age. Punishment for wrongdoing is accepted as It relieves the guilt that Is present. Gross and fine motor skills are more SOphlsticated. The lrnproved control that fosters more independence and a wide radius of self-care activities with less supervision of personal duties required. Periods of rapid fluctuation occur between dependence, Independence, competence and ineptitude, maturity and lnfantl i ism. Cognitive development progresses in the preoperational Ertage with thinking mainly dominated by the use of mental S)"nbols. Thinking can now include events of the past, an‘ltlcipation of the future and also thoughts of what may be °CCurrlng elsewhere (Furth, 1969). This age group finds it 36 difficult to attend to more than one aspect of a situation at a time. Egocentriclty, or the inability to consider the perspective of others, plus the static and irreversible quality of thought, makes the child unable to perceive the process of change. Object constancy is developed so that this age can iaccept separation for short periods of time. The txpddier—preschooler, because of his/her limited knowledge and experience, ascribes to different levels of anlmism, or a tendency to bel leve that Inert objects (such as a monitor) cupssess consciousness and have life and feelings (Furth, 1969). For these siblings, environmental stress can cause Cilsequllibrlum. It Is hypothesized that many of the stress behaviors seen in the two-to-five year Old, SUCh as temper CHthursts and nightmares, will Increase In frequency during tflwe first six months of the monitor experience. Altered behavior patterns may be perceived and reported by the parents in the psychosocial and cognitive areas Including: Psychosocial Development Sibling interaction Regressive behaviors Aggressive behaviors Separation and stranger anxiety Cognitive Development Exploring behaviors Memory/Language Fantasy/imagination '13- rlp.w..wlan.§-i l... 37 These areas were Incorporated In a tool which will assist the researcher to determine the developmental issues perceived by the parents to be prevalent In the Sibling (age two to five years) of a home-monitored Infant. Effect of the Newborn on Toddler—Preschooler Sibling With the birth of a sibling, the world of the first-born crHId is transformed (Dunn & Kendrick, 1982). The change in 'the first-born's social world with the addition of a new Infant sibling is profound. The child's relationships with IDarents are altered dramatically, and the first-born Is faced with someone who is not only a rival for love and attention, but who is insensitive and nonresponsive to the 'First-born's needs and wishes (Dunn & Kendrick, 1982). The talrth of a new sibling has important significance for both CHwIIdren Involved. Adequate sibling attachment occurs =3cxnetlme during the first year of life, and this relationship Its a significant part of the children's growth and develop- ITient (Bank 8: Kahn, 1982). The closer siblings are in age, tl1e greater the opportunity for sharing developmental events (Bank 8: Kahn, 1982). The term "sibling rivalry“ is most popular In the ' lterature and has become synonymous with sibling aggression. Silbllng rivalry focuses on the jealousy of older children tc>Ward their younger sibling, or vice versa (Felson, 1983). Supposedly, the older sibling resents the younger sibling because the focus of the parents' attention on the younger 38 deprives the older child of needed attention. Feison's (1983) sibling rivalry model Implies that anything that increases jealousy between siblings will result in more aggression. If parents show favoritism toward the younger child, the older child's feelings of jealousy may be enhanced and conflict will arise. Little is known about children's reaction to sibling birth since there has been little systematic study of changes in behavior following the arrival of a sibling, and little lJnderstandlng of the importance of such a disturbance (Dunn & llrth of another child. Results suggested that children who are less than two years of age when a sibl ing is born become "Hare dependent and develop less positive social behaviors 1:han do children who are older than two years of age when a thHIng ls born. Mothers of two children displayed more r>roximal and distal behaviors and less toy play than did nKathers of one child. With the birth of a sibling, Dunn ( 1980) found that toddlers age children were those most 'lif sibling reaction to a newborn or sibling rivalry. in the next two sections the concepts of sleep apnea and lfiome monitoring will be discussed. Sleep Apnea in the intense search for the etiology of sleep apnea, the “near miss“ for Sudden Infant Death Syndrome (SIDS) 4O infant has been identified. The American Academy of Pediatrics (1978) Identifies this vulnerable Infant as: ...one between two and sixteen weeks of age who has experienced an episode of prolonged apnea, cessation of breathing for twenty seconds or longer or a brief episode associated with bradycardla, cyanosis or pallor (p. 15). Probably the single most exciting aspect of the last five years in the realm of SIDS Is the evolving concept of a subtly handicapped baby (Valdes-Dapena, 1980). The etiology of prolonged apnea probably represents nqutiple clinical entities and may Include seizure disorders; severe fulmlnate infections; significant anemia, especially liw preterm Infants; gastrointestinal reflux; cardiac anomai les; hypocalcemla and other metabol Ic disorders, as Well as impaired respiratory function (Vaides-Dapena, 1980). Despite the above Identified diagnoses listed as causes of s l eep apnea, there seems to remain a number of Infants who 'F<>r some unknown reason have experienced an lnexpllcable E=c>lsode of near-death (Vaides-Dapena, 1980). Little Is known a“tibolut thezeffects of day-to-day living with the potential ciieath of one's child or new sibling. With the increased use (>1: home monitoring of these Infants, research in these areas ‘ s crucial. Home Monitoring Home monitoring of Infants Is a relatively new form of treatment that is being used with increasing frequency. inasmuch as the basic mechanism(s) behind this cause of post— Derinatai Infant mortality (SIDS) remain unknown, the only 41 possible preventative measure that can be offered to parents Is a monitor that allows the identification of a series of events known to be precursors of death (American Academy of Pediatrics, 1983). Home monitoring ls recommended for four types of infants: (1) The otherwise healthy premature Infant whose hospitalization is prolonged because of recurrent apneic and cyanotlc episodes; (2) the infant who develops observed apnea (or cyanotlc episodes; (3) infants with abnormal sleep infants who are i'ecordings (pnemograms); and (4) subsequent Infant Death Syndrome (SIDS) Infants 8 lbl lngs of Sudden ( Va i des-Dapena , 1980) . A medical decision for 24-hour home surveillance of an lrifant using a home monitor Is a difficult and complex one. When this decision is finalized, an extensive teaching plan is initiated. Nursing has a major role in the teaching of home care management to families of monitored Infants. A titiorough family assessment must be performed in order to itientify parents, caregivers, and support persons who Wlll r‘fieed to learn to care for the Infant. The family teaching “naay Include infant diagnosis, Infant cardiopulmonary resuscitation, monitor knowledge, medication administration, c=are of the monitored infant, emergency plans, and wide use <>f community resources (Halght, Kelly, & McCabe,1980). By providing this training and support, the nurse makes It possible for the parents to willingly and appropriately assume responsibility for the apneic infant (Duncan & Webb, 42 1983). The home monitor does not guarantee the infant's survival (Guntheroth, 1982). The literature written on this topic Implies that the monitoring of an infant who is at risk for sudden infant death is a crisis of life—threatening proportions. Beckwith (1975) implies that there Is reason to be seriously concerned about the adverse effects of monitors on parental behavior and family emotional health. While some families might find that the monitor reduces their level of ianxiety, others experience significant heightening of ienmtional tension when this electric surrogate and ever- r>resent reminder of SIDS ls present in the home (Beckwith, 1975). The assumption that the monitored infant creates an acknowledged stressful event is a logical one. The potential f<>r assault to family and sibling integrity is apparent. Black, Hersher, and Steinschneider (1978) state that ‘Df’oionged apnea is a chronic if self-limiting condition, and ‘tlwe fear of a child‘s sudden death has been raised. A<2cording to Griffin (1980), chronic Illness Includes all <=<3ndltlons that require long periods of supervision, obser- Vation, or care and depends for maximum recovery on the F>atient and family. Strauss (1973) has listed some common t>robiems surrounding chronic illnesses, namely (1) preventing and dealing with medical crises as they occur; (2) control- ling symptoms; (3) folloWIng a medical regime; (4) normalizing interactions with others; (5) arranging payments for treatment; and (6) adjusting to recurrent patterns in the course Of illness. These SlX problems relate 43 to the family experiencing a monitored infant. The regime of caring for a monitored infant requires a lifestyle change. iHMaggio and Sheetz (1983) reported that the mothers of monitored infants found it difficult to take care of the infant as well as their personal needs and all of their previous tasks. The addition of a new family member is a time of stress, and that stress is even greater when the baby is ill or handicapped. For the mothers in this study, stress \~as increased by having to respond 24 hours a day to a rnonitor and knowing that she was responsible for the survival <>f this child. Emotional tension was the highest—ranking individual concern (DiMaggio & Sheetz, 1983). The mothers fkound that meeting the demands of other children was especially difficult. Being required to maintain the <3<>nstant surveillance of their infant, along with the feeling <>f= isolation and decreased time for personal needs, resulted I r! increased stress and little energy to cope with other c-‘-hildren. Further detail concerning the sibling was absent fl"om this study. Adjusting to the recurrent patterns of Illness requires that the.parents acknowledge three realities of home 'rHDnltorlng (Duncan & Webb, 1983). The first is that their ' nfant with apnea has a condition that causes the infant to ‘Stop breathing. Secondly, they must cope with the operating requirements and limitations of a mechanical device. Finally, they must assume direct and full-time responsibility 44 for appropriate intervention should their infant stop breathing at home (Duncan & Webb, 1983). infant with prolonged At present, the outcome for an apnea is uncertain and the handicap undeflnabie. The surveillance may be indicated for months; therefore, for the the apnea-monitored Infant was viewed purpose of this study, as a chronically ill child. Nursing Theogy In caring for the family is to The goal of nursing lassist each member in creative change and steady growth, thus it is the right of each i'eallzing maximum health potential. included as a vital family member and a client sibling to be <>f the nurse. That right assumes assessment of physical, life processes as part of Ibsychosoclal, and cognitive CDlannlng and evaluating interventions for parents and =S-ibiings. Nursing will then possess a twofold direction, 'tlwat of the concept of the holistic Individual and the |rwciusion of the holistic family unit. Martha Rogers' (1981) theory of nursing expresses Qttributes of the person that constitute assumptions upon which nursing science builds its foundation. Fundamental to Rogers' model are five basic assumptions about the individual. The first assumption is that a person Is a unified whole Dossesslng an individual integrity and manifesting characteristics that are more than, and different from, the sum of its parts (Rogers, 1981). A child is sometimes viewed 45 as a small-size adult instead of the complex, changing, shifting, Integrating person that vibrantiy exists during the childhood years. The "parts" of the child are not stagnant, and energies are directed toward making new "parts" and fitting together and readjusting new "wholes" in each stage of development. This dynamic Individual creates new challenges for nursing that require reassessment, flexi- bility, and revision In addressing the health care needs of the child client. The second assumption in Rogers' (1981) framework is that there exists a continuous interchange of matter and energy between the individual and the environment. Rogers‘ ( 1981) theory is characterized by Rlehl and Roy (1980) as a "systems theory" which possesses characteristics of unit boundary, stress and tension, equilibrium and feedback. F’csrtrayed as an open dynamic system, Rogers' (1981) main ‘tlneme is one of the individual's interaction with the (Srnvironment. The sibling can be viewed as a unique lhteractivelhuman being, capable of receiving and trans— 'T‘Itting interactions with the environment, the parent, the tDQbV, and the health care provider. These interactions “Inpact and alter the family and the environment as well. That the general life process of human beings evolves Irreversibiy and unldirectionaiiy along the space/time (1981) frame- contlnuum Is the third assumption of Rogers‘ work. The infant and child progress rapidly along this space/time continuum. in Just nine months, the single-celi- 46 fertilized ovum is transformed into a complex system of approximately 15 trillion cells, possessing a synchrony of function capable of sustaining life outside of the uterus (Schuster, 1980). As the infant makes the transition into the world, the process of human growth and development moves at swift tempo along the time axis. A multitude of new patterns and change await the child as he/she relates intense and mutual interaction with the constantly through an environment. The slinky spirals that depict the rhythmical in nature of Rogers' (1981) life processes might be viewed infancy through adolescence as moving at a greater speed and \Ieioclty through time with a shorter distance between Spirals, indicating a highly charged energy field. The take on new meaning t “wellness of nursing interventions will as nursing attempts to address the needs of the rapidly <=r1anging child. Just as the child grows and moves Into aIcauithood through a multitude of environmental Interactions, The young childbearing family is a 1981). 53:) does the family unit. caynamlc entity, ever changing and growing (Friedman, ‘rifiese individuals who come together as a family are organized ‘lfito a single unit so as to attain family goals and tasks, moving through time in order to address the ever-changing individual and family needs. Material, energy, and informa- tion are exchanged with the environment. (See Figure 2.) The fourth assumption present in Rogers' (1981) theory states that pattern and organization identify people and reflect their innovative wholeness. The child truly reflects 47 Child Bearing and Child Rearing Family 48 his wholeness as he/she relates to the environment. One only has to observe a child's wonder at a budding flower or become proudly excited about the self-built tower of blocks to sense the total involvement that reflects the awesome energy of life. Rogers' (1981) fourth assumption can be easily applied to the family as weIi--a goal-directed system consisting of interdependent and interacting parts which endure and change over a period of time. The interrelationships which are present In the family units are so intricately tied together that a change in any one part inevitably results in a change in the entire system (Friedman, 1981). The subsystems within the family become the basis for the family structure and organization (Friedman, 1981). Friedman (1981) states: One of the important properties of the family as an open system Is called nonsumatlvity, which means that the family cannot be considered merely as the sum of Its parts, but that a system Is greater than and different from the sum of its parts. (p. 75) The unique and innovative wholeness of the family unit certainly speaks to Rogers' (1981) theory of nursing. in the fifth assumption of Rogers' (1981) framework, an individual is characterized by the capacity for abstraction and imagery, language and thought, sensation and emotion. This fifth assumption supports the evolving aspect of cognitive growth. Furth (1969) in a discussion of Piaget's Theory of intelligence states, “Human adult Intelligence is the terminal stage of an evolutionary and development process that is inherent in the self-regulation of an equilibrated organism" (p. 18). The individual must proceed through the 49 successful accomplishment of cognitive growth periods using his/her capability in order to develop the ability for abstraction, imagery, language, and thought. To apply this assumption In a broad sense will permit its application to the entire age continuum from the growing child to the elderly individual. The role of the family in the growth and development of its individual family members is one of major importance, as the family is a nurturing center for its members. The parents must now differentiate themselves to perform mutual support and child-rearing functions (Friedman, 1981). The key concepts in Rogers' (1981) framework center on wholeness, openness, continuity, and dynamic creative change. Using the above assumptions, the purpose of nursing is to promote symphonic interaction between human beings and their environment, to strengthen the coherence and Integrity of the human field and to direct and redirect patterning of the human environment field for realization of maximum health potential (Rogers, 1981). The nursing profession must gain more knowledge of the siblings in the family in order to assist the sibling to adapt to and cope with environmental stress and change. Murray and Zentner (1975) define health as a purposeful adaptive response--physlcaliy, mentally, emotionally, and socialiy--to internal and external stimuli in order to maintain stability and comfort. Health is seen as a complex 5O dynamic fluctuating state that can be visualized on a health/illness continuum. The latter part of the above definition may be revised in light of Rogers’ (1981) principle of hellcy that assumes man-environment interactions are directed toward achieving new dimensions of complexity. They are not directed toward achieving homeostasis or equilibrium, as the life process Is continuously Innovative and requires, for its understanding, a concept of man evolving (Rogers, 1981). Thus, a revised definition of health may be stated as: Health is an optimal adaptive response of the holistic person (blopsychosociai, cognitive, and spiritual) to the internal and external environment in order that an individual may continually evolve, change, and grow. The health of the individual must indeed be a priority for nursing in order to promote total family health. By assisting the family members to evolve, change, and grow in response to the environmental changes, nursing will truly have accomplished its mission of individual and family health. The unifying principle and hypothetical generalizations basic to nursing seek to describe, explain, and predict the phenomenon central to nursing's purpose--human beings (Rogers, 1981). Mothers' perceptions of their young children was described in this Study. Conceptual Model The conceptual scheme portrays the effect of the apnea- monitored infant on the toddler—preschooler sibling and the 51 impact of this event on growth and deveIOpmental processes as perceived by the mothers. A modification of the Double ABCX Model of Adjustment and Adaptation (McCubbin & Patterson, 1983) and M. Rogers‘ nursing theory will be used to Illustrate those concepts previously discussed. (See Figure 3.) The family demands, stressors and hardships (a factor) will include the home-monitored infant (stressor) and the two-to-five-Year-old sibling (hardship). Stressor, as defined by McCubbin and Patterson (1983) Is a life event or transition impacting upon the family unit which produces, or has the potential of producing change in the family social system. Furthermore, family hardships are defined as “those demands on the family unit specifically associated with the stressor event" (McCubbin & Patterson, 1983, p. 8). Both the stressor and hardships place demands on the family system which require management. Family capabilities is the (b) factor; the family's resources for meeting the demands of the stressor and hardships (McCubbin & Patterson, 1983). This factor is the family's ability to prevent an event from creating a crisis in the system. The family‘s positive adaptation will depend on its ability to meet obstacles and change its course of action. The (c) factor in the ABCX will be the mother's perception of the impact of the monitor on her two-to—five-year-old child. The (c) factor is the maternal definition of the sibling adjustment to the home 52 Figure 3. Modified ABCX Model (McCubbln & Patterson, Family Demands (a) Stressor Hone-Hanitored Infant Hardshzg Age 2f5 years (b) Existing Family Resources Heternai Perception y, '."'l »“ ,. unnumu a l- u .l ‘ i i I Pre-Cr ises Time Sibling impact 53 monitor experience. These concepts taken together: (a) the stressor event and hardships; (b) the family's resources; (c) the maternal perception of this situation; and (d) the resulting sibling impact are the basic concepts of this study, which will assist In laying the groundwork for nursing to intervene with the mothers of the home—monitored infant in relation to the young sibling. The complete conceptual model extrapolates the two-to-five-year-oid sibling from the modified family stress model and focuses on the impact of the stressor on selected developmental events as perceived by the mother. (See Figure 4.) The sibling impact circle (d) symbolizes the concept of a person as a unified whole, who behaves as a totality (Rogers, 1981). The arrows around the sibling impact circle denote the open system which constantly interchanges materials and energy with the environment (Rogers, 1981). The slinky circles that lead from the modified family stress model and also extend to and from the sibling impact circle, represent the evolution of the life process and the dynamic process of patterning, repatternlng, organization, and change. The sibling adaptation circle (e) denotes the child- environment transaction, which requires adaptation and positive change in response to the family stress variables. The sibling maladaptation circle (f) represents the effect of the stressful life events that may become greater than the Chi id's coping abilities (such as competencies and sources Of 5‘! n: n nu .D m 0.0 nu e v.$. Hui. v. nu Au Au pi +.Au n nu .sUM a e .h r gui-vi Au. 8 .r n Runs 0 no.” ii e. um ii 8 r a. du.e s r nuat.s u um.LAe“N a r 'Ptl au .3 s u.d r at n v... D.a_i.nu a. .i o no.” m n" null a O h.e. . no.0 _M nu nu nu Mm Figure 4. Ame ........ . ...... .... ..................................... sequences-«ex 0533 .0. no napauneuuem Hana-aux .0. «3 uuomen madanam uneven oeuowmcox nonnouum .u. IOUHSOUOK adage» ucauaaxu .a. Ave coda-noose oceans» 55 support) leading to a vulnerable child who displays signs of stress. The lines connecting the circles indicate a continuum of adaptation/maladaptation. This study will assist the nurse to gain insight and knowledge about maternal perceptions of the effect of the home-monitored infant on the two-to-flve-year—oid sibling. interventions can then be planned with the family to decrease sibling stress factors present and to promote positive sibling Interaction and coping with the new and different environment. in Chapter Three the related literature is reviewed. Apnea, home management, siblings of chronically ill children, and reaction to sibling birth will be critiqued to form a foundation for this study. CHAPTER THREE Review of the Literature introduction The following review of literature will include research specific to the concepts within the research questions. 1. According to maternal perception how is the psychosocial development of the sibling affected by the home- monitored infant as measured by sibling interaction, regressive behavior, aggressive behavior, and separation anxiety both stranger and separation? 2. According to maternal perceptions how is the cognitive development of the two-to—five-year-old sibling affected by the home-monitored infant in the areas of expiorative behaviors, memory/language and fantasy/ imagination? The discussion will be related to a short overview of major research findings regarding Sudden infant Death Syndrome and infantile apnea. in addition, literature concerning well siblings' adjustment to the chronic illness or handicapping condition of these brothers/sisters as well as the siblings' response to a newborn will be presented. Sudden infant Death Syndrome - infantile Apnea While the investigation of the relationship between prolonged apnea in infants and SIDS began in the 1970's, uncertainty of this relationship still remains (Barr, 1979). Sudden infant Death Syndrome (SIDS) is the leading cause of postneonatai infant mortality, accounting for approximately 56 57 one-third of all deaths in infants between one week and one year of age (Beckwith, 1975). The literature abounds with speculation and theories about the etiology of SIDS. The cause has not been determined, but current research Is directed toward a deficit In the infant's respiratory system (Vaides—Dapena, 1981). Beckwith (1975), In a synthesis of epidemiologic and Dathologlc findings, discusses the eligibility factors of SIDS. Age and sleep were the two constant features of the syndrome. More than 90 percent of SIDS deaths occur between rnltdnight and 8:00 a.m., predominately In the two-to-four- rn<>nth age group. Beckwith (1975) explained that death is =3! lent and rapid with minimal pathologlc factors, which 23Laggest (1) an agonai episode of motor activity and (2) an aacmcompanying elevated intrathoraclc negative pressure. <3c>ntingency factors of SIDS include minor infections, prematurity, low socio-economic status and polygenic genetic factors. All of these may play a role in altering the infant r- ' 8k for Sudden Infant Death Syndrome. Beckwith (1975) discussed SIDS as representing a "final (:CNTwnon pathway“ in which similar agonai mechantsms are shared by the vast majority of cases. Tonkin (1975) postulated that the airway of an infant with Sips may be anatomically ‘VkJinerable at the oropharyngeal level between the soft palate Elna base of the skull, resulting In airway occlusion and Cardiac arrest, following periods of partial or complete Oxygen deprivation. 58 Brady, Ariagno, Watts, Goldman, and Dumpit (1978) conducted a study to address the safety of preterm infants in relation to airplane travel. Sixteen infants, age two weeks to six months, were subjected to a mild (17 percent oxygen) induced hypoxia. Eight of these infants had a history of recurrent apneic spells (five of these had been "near- niisses"), and eight infants were preterm infants. There were 11c> changes observed in the control group; however, in the aDneic group, the authors observed an increase in periodic bI"eathing as well as total duration of respiratory pauses. T'rhese authors concluded that infants prone to apnea may have Lllfi lque respiratory responses to a mild induced oxygen CleefICJt. These results lend support to the hypothesis that some cases of SIDS may be related to abnormal venti Iatory r'eesponses to oxygen and carbon dioxide, preceded by recurrent hypoxic episodes. Kelly, Shannon, and O'Connell (1978) assessed \Ieentiiatory control during quiet sleep in 11 Infants who had required two resuscitations due to prolonged apnea. The aLJthors found that these infants had a deficit in the reQulation of alveolar ventilation which results In hyboventliation. Williams, Vaueter, and Reid (1979), who d ' scovered increased muscularity in the pulmonary circulation (3* fifteen victims of SIDS theorized that some SIDS victims are hypoxemlc before death. Vaides-Dapena (1980) stated that idiopathic protracted apnea during sleep may be part of the pathogenetic mechanism 'I ' I 3? b k . ‘l‘lg ‘I r /,7f 59 In some instances of SIDS. She theorized that upper airway obstruction induces the greatest and most dangerous changes. Infant feeding can also produce prolonged apnea and transient airway obstruction (Steinschneider, 1976). Five apneic infants were investigated by Steinschneider (1972). The findings supported the hypothesis that prolonged apnea Is a physiological component of sleep, and the Mechanism needs to be identified prior to the final tragic event. Naeye, Ladis, and Drage (1976) conducted a prospec- t I‘ve study of 125 SIDS victims. Compared with matched con- tIl"‘4::ils, a significant number of future SIDS victims showed ¢e\/ Idence of neonatal brain dysfunction, including abnormali- t les in respiration, feeding, temperature regulation, and tweelJroiogical tests. A significant number of these babies vveelre mildly underweight for gestational age. Mothers who smoked and had a history of anemia were in greater number In the SIDS Infant population. Summary of Research Studies Related to SIDS Sleep Apnea. The relationship between SIDS and sleep a”Flea was not determined in the reviewed literature. The 9‘ Iclogy of SIDS is still not known. Seven studies report that age and sleep are two definitive factors that interact V“ th a respiratory deficit, hypoventl lation and chronic “Ypoxia (Beckwith, 1975; Brady, 1978; Guntheroth, 1982; Keiiy, 197a; Tonkin, 1975; Valdes-Dapena, 1980; and Williams, i979). Other predisposing variables include minor Infections, low socioeconomic status, smoking mothers, low I I I. (D O 60 birth weight, subsequent SIDS, genetic factors, feeding and temperature regulation (Beckwith, 1975; Naeye, 1976; Vaides- Dapena, 1980). No studies demonstrate a correlation between sleep apnea and SIDS, however. The relationship between the two is Implied by several of the studies reviewed. Apnea Monitor - Home Management. As the causal relationship between SIDS and the "near-miss“ infant is implicated, the hypothesis that apnea may be one of the final pathways to Sudden infant Death Syndrome has received considerable supporting evidence (American Academy of Pediatrics, 1983). The "near-miss" Infant is defined as the presumed-to-be-healthy infant who has a life—threatening event (l.e., stopped breathing) reported by the caregiver; the infant's life is saved by a timely intervention that revives the infant (Valdes—Dapena, 1980). Various treatment Interventions are being used to help prevent the tragic event of Sudden infant Death. Home apnea monitoring with resuscitation is one of these Interventions. Kelly et al., (1978) conducted a study to determine if infant mortality could be altered by the identification and treatment of prolonged apnea during sleep at home, by mothers and fathers trained In resuscitation methods. Kelly et al., (1978) trained 84 sets of parents in the identification and treatment of prolonged sleep apnea (i.e., stimulation of the infant). The 84 infants were assigned to three groups as follows: 1. Group I (N - 35) had 17 infants with episodes of sleep apnea requiring resuscitation during home 51 monitoring. Four of these infants were not successfully resuscitated and died. 2. Group Ii infants (N = 25) had experienced apnea while awake. Nine of these infants required resuscitation. The study does not report the number of deaths In this infant group. 3. Group ili infants (N - 24) were monitored because they had sleep apnea lasting more than 20 seconds; however, none of these infants required resuscitation. None of the infants in Group III expired. This study suggests that Infants who have multiple episodes of prolonged apnea are at risk for life-threatening apnea. The study concluded that the survival rate of infants with the use of home monitoring and parents trained in CPR was 93 percent. Self-reports of 133 parents (74 families) who had a monitored Infant revealed that 71 percent of families reported were highly anxious during the first week of home monitoring (Cain, Kelly & Shannon, 1980). While the majority of the families (73 percent) reported that the monitor made them feel more comfortable and relaxed with their children, there were some negative aspects of home monitoring reported. After the first month of monitoring, 27 percent of the parents continued to describe themselves as highly anxious. Fifty-six percent of the parents reported restrictions in their social life, and 14 percent reported worsening marital relationships. Eleven (approximately 10 percent) parents 62 stated that the monitor made them more Irritable with their other children. The parents' Initial anxiety, the fact that some parents continued to feel stressed, and the other problems the parent experienced during the monitoring period underscores the need for an ongoing support system. A descriptive, retrospective study by Black, Hersher, and Stelnscheider (1978) of 50 infants on home apnea monitors found this management approach burdensome for the parents, especially the mothers who found it to be an isolating experience. Approximately 36 percent of the parents report that the monitor negatively affected their lives slightly, while 43 percent were significantly affected. Eighteen percent were drastically affected, and 3 percent reported no effect. Of those families with other children, 60 percent reported that the monitor appeared to have no effect on the siblings. Ten percent of the parents observed some increase in sibling rivalry and also reported that discipline “broke down.“ Goetz (1981) conducted a descriptive study of 22 families who had experienced, or were experiencing, a home- monltored infant. The study purpose was to identify the relationship between a family's perceived severity of the infant's condition, threat of loss, Impact of monitoring, available support, and family functioning. Several different scales and lndlces were used to measure the parents' beliefs and perceptions. it was found that a high percentage of caregivers believed their child's condition was serious. The 63 use of the monitor and the feedback from the monitor (i.e., the number of real alarms) supported the parents' beliefs about the seriousness of the infant's condition. The subjects believed that, overall, home apnea monitoring affected family life only slightly to moderately. The areas of family life that subjects felt home monitoring affected somewhat, to very much, Included: Anxiety (50 percent), level of fatigue (46 percent), social life (46 percent), family finances (32 percent), and family travel (32 percent). Parents (41 percent) stated that home monitoring would affect their views on having more children. No significant relationship was found between the families' perception of the scope of impact and the level of family functioning. Goetz concluded that a home monitor is a stressor and significantly impacts family life; however, most monitoring families use effective coping mechanisms (such as use of support systems) in adapting to the stress after the initial crisis of monitoring. This study had a sample of predominantly middle-class families. The articulation, and measurement of specific coping mechanisms, were not reported by this author. Through the use of a questionnaire and interviews, Barr (1979) surveyed 15 families. Three phases of adjustment were identified: (1) The initial or breaking-in phase, (2) the adjustment phase, and (3) the "time thereafter“ phase. The initial phase consists of the first few days or weeks at home when the parents are suddenly placed in the 64 Situation of expecting a medical emergency. At this point parents do not trust the monitor; they question whether the baby will start breathing again, or if they are competent enough to resuscitate the infant. During the adjustment period the parents learn how to live with the monitor, seek help from friends and neighbors, and entertain socially. The last phase, called "the time afterward,“ occurs slow and unnoticed. Parents now trust the monitor and have become confident that the baby will "make it." it appears that the parents have made a successful adjustment when this stage is reached. DiMaggio and Sheetz (1983) interviewed 19 mothers whose major concerns were the adjustment to a new baby, coping with the demands of other children, emotional tension, lack of time for personal needs, feeling tied down, unavailability of baby-sitters, and lack of time for household tasks. Other concerns were responding to monitor alarms, mouth-to-mouth resuscitation, amount of attention to monitor malfunction, ability to hear the monitor, and other questions about the monitor. Learning to care for, and establishing a relationship with the infant was identified as another major category including growth and development, traveling, feeding, Infant appearance, and being a good mother. The mother's physiological restoration was the last major category of concern with specific interest in restoration of figure, fatigue, inability to lose weight, depression, and family planning. 65 Summary of Literature Related to Home Monitoring Six studies concerning the apnea monitor were reviewed. One study (Kelly et al., 1978) evaluated the effectiveness of monitoring on Infant mortality in sleep apnea. The researchers concluded that Infant deaths could be prevented by a home-management program. This study may have influenced the increased use of apnea monitors in home management programs. Five research studies (Barr, 1979; Black, et al., 1978; Cain, et al., 1980; DiMaggio and Sheetz, 1983; and Goetz, 1981) suggested that the Impact of monitors on family life was a stressful event. in particular, Cain et al., (1980) reported high parental anxiety during the first week of the monitoring, as well as restrictions on social life and Irritabiilty with their other children. Three of the studies had subjects who were mainly white, middle-class families (Black, 1978; Cain, 1980; Goetz, 1981). This Is not representative of the SIDS infant population. A typical demographic profile of SIDS families proved to be black infants with young, unmarried mothers of low socioeconomic and low educational levels. Unfortunately, both studies by Cain et al., (1980) and Black et al., (1978) were conducted by members of the monitoring program and, therefore, it is difficult to know how many of these replies may have been biased (American Academy of Pediatrics, 1983). 66 Well Siblings of Chronicaily ill Children Cystic Fibrosis. Many studies of siblings focus on factors of birth order, sex status, and family size, while few look at the impact of Illness on the sibling. Gayton, Friedman, Tavormina, and Tucker (1977) conducted an inter- view and a psychological evaluation of 43 families who had children age five to 18 years with diagnosed cystic fibrosis. The study purposes were to determine: (1) The degree of emotional upset or distress experienced by the child with cystic fibrosis; (2) the relationship between the presence of a child with cystic fibrosis and its effect on parental personality functioning and family interaction; and (3) specific emotional impact of cystic fibrosis on siblings. There were 33 children with cystic fibrosis and 31 well siblings also from five to 18 years. Twenty-nine fathers and 43 mothers were also part of the sample. Data gathering was divided into two main sections. Each member of the family was Interviewed via a semistructured schedule. Following the individual Interviews, psychological evaluations of the patients, siblings, and parents were conducted. Parents completed the Family Concept Q Sort (FCQS) and the Minnesota Muitiphasic Personality inventory (MMPI). The FCQS test provides information about family adjustment and family satisfaction. The test results for the parents were analyzed in two ways: First, differences between the parents on the various instruments were examined and, second, in those cases where comparison data were available, the parent 67 responses were compared with similar data obtained by other researchers from parents who had a cystic fibrosis child. No significant differences between mothers and fathers were found in their perceived family adjustment or family satisfaction scores. Parents, however, perceived more family satisfaction and adjustment in a hypothetical family situation Involving a noncystic fibrosis child than in their own family as It existed. The findings suggested that the impact of cystic fibrosis on family functioning tends to be perceived similarly by both parents. Findings on the MMPI, indicated that mothers scored significantly higher on the Depression and introversion scale and significantly lower on the Mania variable than the fathers. Fathers had significantly higher scores on the Lie, Hypochondrlas, Hysteric, and Psychopathic Deviate MMPI scales than control parents. Mothers of the cystic fibrosis child scored significantly higher on the Depression and Masculinity-Femininlty scales than parents of well children. The scores of 17 parents who had at least one MMPI clinical scale in the abnormal range were closely examined. From this subgroup it was found that 64 percent of these parents had male children and that 78 percent of the fathers who had MMPI scores in the abnormal range also had a male child. The cystic fibrosis children and the 26 siblings completed the Piers-Harris Self-Concept Scale, Missouri Children's Picture Series, and Holtzman ink Blot test. 68 The test results for patients and siblings (five to 15 years) were compared. No significant statistical differences were found between the mean scores of the cystic fibrosis children and their siblings on either the Piers-Harris Self- Concept Scale or the Missouri Children's Picture test. The mean percentile scores in terms of personality functioning on the HIT were well within normal limits for both groups. The results of this study provide data that suggest that the effect of cystic fibrosis on family interaction occurs primarily in terms of decreased family satisfaction and family adjustment. Both fathers and mothers reported their family would be more what they wanted It to be if the child did not have cystic fibrosis. This study does not support the idea of emotional upset in the child with cystic fibrosis. The profile scores for the children with cystic fibrosis were well within normal limits and did not differ from the profiles obtained from the siblings. inspection of the individual profiles suggests that the overwhelming majority of children with cystic fibrosis present themselves as psychologically stable. Evidence for psychological problems related to well sibling development was lacking. Psychological test performance of the siblings was consistent with that of the children with cystic fibrosis and well within normal limits. The average total self-concept score for siblings (63 percent) is higher than the data reported by the Piers-Harris Scale for normal children (56 percent). Gayton et al., (1977) state that, "it is clear 69 from this study that the conception of chronically llI children as invariably and significantly disturbed and their families handicapped, Is not true for cystic fibrosis" (p. 893). Cancer. lies (1979) Interviewed five healthy school—age siblings (six to 11 years) of children with cancer to obtain their perceptions about family life, the III sibling, and their experiences. The pervading theme In iies' study was one of change in the area of interpersonal relationships and the external environment. The siblings perceived a loss of quantity and quality of relationships with parents and the ill sibling, as well as concern about changes in the lil sibling's appearance. The well sibling acquired empathy for parental needs, cognitive understanding, and respect for the ill sibling, as well as an increase In self-concept. Cairns, Clark, Smith and Lansky (1979) also conducted a study of the impact of childhood cancer on healthy siblings (ages six to 16 years) in 71 families who had a school—age child with Cancer. Three psychological tests were administered: The Piers-Harris Self—Concept Scale, the Blne— Anthony Family Relations test, and the Thematic Aperceptlon Test (TAT). The Piers-Harris test was administered to 47 patients and 55 siblings. The siblings scored within normal ranges on the Piers-Harris Self-Concept Scale. The Family Relations test was administered to 36 patients and 31 siblings. Analysis of 14 patient-sibling pairs showed significant differences between the patients and their 7O siblings on two Family Relations test scores. Siblings perceived mother as overprotective and overindulgent. Marked differences were present between the patient and the sibling groups on the TAT Test in the length of responses and the number of prompting and clarifying questions asked by the examiners during the test session. Seventeen patients and 20 siblings were administered the TAT. The siblings had higher scores than the patient in 12 of the 14 content categories (anxiety, depression, good mood, independence, dependence, hostility, friendliness, negative and positive body image, failure, achievement, social involvement). The authors (Cairns et al., 1979) reported that siblings of children with cancer had significant anxiety and fear for their own health, and for social isolation. The similarities between the cancer children and their healthy sibling were striking, as both populations had a negative body image and high anxiety scores. Although the healthy siblings did not experience the same body image assaults as the ill siblings, the Illness did have a profound effect on them. The well siblings suffered severe anxiety about their gwg health and felt isolated from parents, other family members, and friends. Parental postponement In attending to the siblings' needs and parental resources directed toward the III family member were reported. in summary, the siblings in this study revealed anxiety often manifested as the symptoms of headache, abdominal pain, and/or symptoms similar to their iii brother or sister. 71 Diabetes. Carandang, Foiklns, Hines, and Steward (1979) conducted a home study of 36 children (six to 15 years of age) whose sibling had Diabetes to find out the children's understanding of the cause and treatment of their sibling's illness. These children were matched with 36 control children who had healthy siblings. Pretesting was done to determine the children's level of cognitive development, and then interviews were conducted to find out each child's understanding of the cause and treatment of their sibling's illness. Within each group, 12 children functioned at each of three cognitive levels of Plagetian theory; namely, concrete operational, transitional, and formal operational. The authors hypothesized that children would display differences In their level of understanding of the cause and treatment of their sibling's illness that could be correlated with the different level of cognitive development. There was a significant association between the pretested cognitive level and levels of conceptualization for the cause of illness (p < .001). Differences in the levels of illness conceptualization between the children with a diabetic sibling and the healthy matched control group revealed significant values for comparison of conceptualization levels on illness causality and Illness treatment (< .001). The study demonstrated that the siblings' ability to conceptualize illness is associated with their level of cognitive development. The researchers found that the living 72 with a diabetic sibling also influences illness understanding, especially for adolescents who are formal operational thinkers. The authors concluded that the disorganizlng effect of stress may prevent a child from applying an advanced pattern of cognitive analysis to a given topic. Long-term stress, such as the stress from chronic Illness, may interfere with understanding in a more permanent fashion. The authors speculated that causes of the lower level of cognitive development may be the result of an information deficit, the specific family task orientation, and the mother's coping style. Crain, Sussman, and Well (1966) compared the behavior of the diabetic child with a well sibling, and the relationship differences between diabetic child and mother relationship versus the well sibling and mother relationship. Nineteen diabetic children, age range eight to 11 years, comprised the experimental group; the control group consisted of 16 well children the same age who had one or more diabetic slbiing(s). in five of the 16 children, the diabetic child and the well sibling were in the same family. During home visits the mother-child dyads were observed as they engaged in task activity. A rating of mother's warmth and control toward the child was observed and documented on the Fels Parent Behavior Rating scale. A parental acceptance scale also measured the mother's acceptance of the child where the mother indicated what changes she would like to see in the child's behavior. The child also completed a self-esteem sails 311:: CA!!! 3~u lino Clo: dial and to chi hea boo Car. 73 measure as well as an instrument that measured the child satisfaction with his/her own behavior. in addition, the child's academic achievement was determined by comparing scores on the California Test of Mental Maturity and the California Achievement Test. Each child variable was then correlated with each maternal variable through the use of the Pearson Product-Moment Correlation Coefficient. The findings of this study revealed that the diabetic child did not differ significantly from that of the nondiabetlc sibling in the areas of academic achievement, self-esteem, satisfaction with behavior, and level of aspiration. The second hypothesis examined the mother- diabetic child relationship and the mother-well child relationships. The findings suggest that the mother's behavior is highly related to the performance of the child who is diabetic. The well sibling did not appear to have the close relationship with his/her mother that characterized the diabetic sibling maternal relationship. Chronic illness and Handicapping Conditions. LaVigne and Ryan (1979) studied 203 children ages three to 13 years to examine the psychological adjustment of the siblings of children with handicapping conditions. in addition to the healthy control group (N a 46), siblings from three clinic populations were chosen; namely, hematology (N a 63), cardiology (N - 57), and plastic surgery (N . 37). The parents of the children completed the Louisville Behavior Checklist (LBCL), a standardized 164-item questionnaire and beha‘ QFOU' cont Ioia sibl and beha Coni SCa Yeai oat DSy< Car; 9'01 74 provided data on demographic and family—related dimensions. The hematology and cardiology sibling groups were used to demonstrate invisible chronic disease not readily observable to the layperson. The combined group was compared to siblings of plastic surgery patients whose medical condition was highly visible. Several significant findings resulted from this study. With all ages combined, significant sex differences were obtained on the scales of hyperactivity, total aggression and irritability. Males displayed more symptomatic behaviors than females. Additionally, the seven-to-13-year-old male siblings tended to show more behavioral disturbance than the females in the control group. On measures of anxiety-based behavior problems, the siblings in the three combined illness groups were significantly more withdrawn than the healthy controls. The siblings of patients with visible handicaps (plastic surgery) were significantly more withdrawn than siblings of patients with an invisible condition (cardiology and hematology [p < .011). On measures of overall sibling behavioral disorders and psychopathology, the illness and control group differed significantly on the severity level scale of psychopathology among siblings ages three to six years of age (p < .05). Also, siblings of plastic surgery patients scored significantly higher on the severity level of psychopathology measures than siblings in the combined cardiology-hematology groups (p < .01). in the sibling group, age seven to 13, male siblings tended to show more (I) III In 75 likelihood of emotional problems than the females in the control groups, with the greatest difference presented In the hematology group. The lrrltabliity scale displayed significant Illness group differences with the siblings of the combined patient groups being more irritable than the Siblings of the healthy controls (p < .05). The siblings in the visible illness group were more Irritable than siblings in the two invisible Illness groups combined (p < .01). Finally, the results of this study revealed that siblings of chronically ill and handicapped children were more likely to display symptoms of irritability, psychopathology, and social withdrawal. A significant difference in degree of behavioral disturbance was found among younger children, ages three to six years, with siblings of patients undergoing plastic surgery, and male siblings, ages seven to 13 years, of brothers and sisters with blood disorders. No group differences were noted on measures of aggression or learning problems. A second study focused on the mental health of siblings of congenitally abnormal children (Gath, 1972). The sample consisted of 36 school-age siblings of 22 children with Downs Syndrome and 35 school-age siblings of 21 children with repaired cleft lip/palate deformities. Each of the 71 subjects was Individually matched with a control using the following criteria: Same age within six months; sex; family size and ordinal position in the family; type of school; school year; and residential area. The research instruments ie'e 0‘ "refit “ulcer «fairs ‘amiii revea Sibiii the Si Ccntr, Dcwns 38M lib/p infer ”Bit. Categ VESUI $37101 76 were behavioral scales devised by Rutter for completion by parents and teachers. The parents (N a 71) were interviewed concerning management problems occurring in the previous 12 months in relation to the older siblings. The investigator rated the severity of the management problem concerning the handicapped child in relation to the other children in the family with a three-point scale indicating few/none, moderate, and severe. Parental and teacher behavioral rating revealed no significant difference between the school-age siblings with a Downs Syndrome child and their controls or the school-age siblings of a cleft lip/palate child and their controls group. However, parents of more than half of the Downs Syndrome children reported moderate or severe manage— ment problems, while only two of the families with cleft lip/palate children reported moderate difficulties. Little information was given in the article related to the instru- ment. The “deviant" children were divided into diagnostic categories labeled as neurotic, antisocial, and mixed. The results of this study are questionable due to the small sample size. Nephrotic Syndrome. Vance, Fazar, Satterwaite, and Pless (1980) studied the parents and siblings of children with Nephrotic Syndrome. The hypothesis that the family members were more likely to develop psychosocial problems than those members of families with healthy children was tested. Seventy-nine siblings (age range four-to-nine years) from 36 families with a Nephrotic patient were compared with 77 79 control subjects. Family Interviews, parent rating scales, and teacher reports were part of the data collection. All children completed a set of Self-Observation Scales (SOS). The scales comprised a series of self-reports about the way children perceive themselves and their relationship to peers, home, teacher, and school. The SOS covers the ages from four to 17 years by using three different standardized forms. Few differences were revealed between the two groups, although parent responses suggest that school performance of siblings of nephrotlc children was significantly worse than parent reports of the control children. This finding was also confirmed by teacher ratings, with a higher proportion of nephrotlc siblings underachieving (21 percent versus 9 percent), a difference In favor of overachlevlng was found in the nephrotlc sibling group as well (9 percent versus 0). Behavior assessment failed to indicate any major differences In the frequency of abnormal behavioral symptoms. Although not statistically significant, nearly twice as many siblings of those with nephrosis were described by themselves as not having “enough friends“ (22 percent) as compared with siblings in the control families (13 percent) (Vance et al., 1980). Siblings in nephrotlc families were reported to be more often embarrassed by each other, although the child with the disease was not often mentioned as the cause. Less fighting was noted among the nephrotlc siblings compared with the control (52 percent versus 76 percent). resea Sibii ClOSE Iiine famli EEPei Sibl DOOri and Wang Varii numb, 78 The results of the psychological testing (805) found the scores divided into three age groups: Primary, intermediate, and adolescent age groups with 53 sibling pairs compared-—11 from the primary group, 28 from the intermediate group, and 14 in the adolescent group. None of the values of any of the subgroups was more than one SD below the mean. Thus, no clinically important psychological abnormalities were found based on this measure. However, when the T scores were combined for all three groups, the means of two factors-- namely self-security and social confldence-—were signifi- cantly lower in the nephrotlc sibling group (p < .05). The researchers reported few differences of Importance when siblings and parents In nephrotlc families are compared with closely matched families without the presence of chronic illness. This study suggests that stress on members of a family where there is a child with Nephrotic Syndrome is generally less than what has been thought in the past. Well siblings of Nephrotic Syndrome children were reported to have poorer school performance, a decrease In sibling fighting, and a decrease in self-security and confidence as compared to the control group. Summary of Literature Review Related to the Siblings of Chronicaily lll Children The literature on the impact of chronic illness and handicaps on well siblings is inconclusive. Because of the variability of the eight studies reviewed in regard to sample number, Instruments used, wide sibling age range, as well as :atle' 39d 0 3L Since iad I socia lower 3‘abf diffg 79 the variety of diagnoses used, only a few trends and conclusions can be presented. There are few recent studies on sibling response to chronic Illness. Furthermore, only three studies had children five Years of age or below in the study sample (Gayton et al., 1977; LaVigne & Ryan, 1979; Vance et al., 1980). Gayton et al., (1977) found no evidence of negative psychological function in the siblings age five to 18 Years of age of cystic fibrosis patients. in lies' (1979) interviews of five school-age siblings of cancer patients, there was evidence of perceived loss of quantity and quality of relationships with family members. Cairns et al., (1979) found that school age siblings of children with cancer had many of the stresses that the child with cancer had, including anxiety and fear for their own health and social isolation. The research by Carandang et al., (1979) revealed a lower level of cognitive development in the older sibling of diabetic patients. Crain et al., (1966) found no significant differences in psychosocial functioning between diabetic Children and nondiabetlc siblings. A large study performed by LaVigne and Ryan (1979) found that siblings in the handl- capping conditions group were more withdrawn and Irritable than the control group. The siblings who lived with brothers and sisters with visible handicaps were even more with drawn and irritable than the sibling with invisible handicaps. Behavioral disorders were significantly more frequent in siblings age three to six years of age for the illness 80 groups. With the plastic surgery patient, siblings were significantly higher on severity level of psychopathology than the Invisible illness group. Gath (1972) also conducted a matched control study of school-age siblings with sisters and brothers with Downs Syndrome or Cleft Lip/Palate deformities. The behavioral ratings revealed no significant differences among the sibling groups. Vance et al., (1980) suggests that siblings (age four to nine years) of children with Nephrotic Syndrome have lower self-security, confidence, and school performance. The investigations reviewed mainly the school-age child. There is minimal research that addresses the younger sibling (two to five years). It is interesting to note that several of these studies used parent reporting to address behavioral changes in siblings. From the literature reviewed, there appears to be a lack of empirical evidence linking chronic Illness to sibling impact. However, several interesting themes have emerged in the analysis of the research: 1. Only three studies include siblings under five years of age. 2. Most of the sibling studies use school-age children. 3. The study results reviewed are Inconciusive. A cumulative structure is lacking related to sibling impact and contradictions in the research remain (McKeever, 1982). The fact that many siblings of chronically ill children do not develop symptoms that require professional intervention may reflect their capacity to function ‘1 t? syStE ‘Cng borr inte dlac of I the DUrI Were Chi; Seek and 81 effectively with stress. Furthermore, most of the subjects in the studies reviewed were middle-class, where support systems are more readily accessible for these siblings. in summary, it appears that the research designs are Inconsistent and deal with a multitude of variables (i.e., age, family structure, and disease status), which makes it difficult to draw a generalization from the reviewed research studies. Effect of Sibling Birth on First-Born Child Little is known about children‘s reaction to sibling birth, even though the topic of sibling rivalry is found frequently in the textbooks, there is little research supporting the theory of sibling jealousy (Ashburn & Shuster, 1980; Brazeiton, 1974; Dunn & Kendrick, 1982). Dunn and Kendrick (1982) conducted one of the few longitudinal studies on how the birth of a sibling affects the first-born child. The sample was comprised of 40 first— born chlidren of working-class British families observed and interviewed at home over a 14-month period. Mother-child dyads were sampled at four Intervals: During the last month of pregnancy, during the first month after the birth, when the baby was eight months old, and again at 14 months of age. During each of these periods, two-to—three one-hour visits were made to the home. Mothers were questioned about the children's feeding, sleeping and toilet habits, attention- seeking behavior, independence, dependence, fears, worries, and "miserable moods." are Li i n tcé lng FED 82 After the birth of the baby, marked changes were reported In the behaviors of the majority of first-born children, particularly in interaction with the mothers. A majority of children (93 percent) had an increase In "naughtlness" and demanding behavior directed toward mother. More than 50 percent also had a reported increase in clinging and tearful behavior after the sibling birth with sleeping problems also increased by 28 percent of the children. Signs of regression were observed by 28 percent of the mothers, which included baby talk, demand to be carried around, and requests to be fed. Over half of the mothers (50 percent) reported an increased independence in their first—born child, in that the child insisted on feeding, dressing, and tolietlng Independently, as well as for solitary play. An increase In child imitative behaviors (75 percent) was reported by the mothers (Dunn & Kendrick, 1982). Thirty-five measures of maternal and child behavioral changes from pre-slbilng birth to post-sibling birth were assessed by the Wilcoxon T Test (Dunn & Kendrick, 1980). Several measures which reflected maternal attention to the child were decreased, such as time spent in joint play; time for which the child was held by mother; maternal affectionate contact; and maternal giving, showing, and pointing out objects, helping the child, or making suggestions--which were features of whatever was the current focus of the first-born. These above measures were all decreased by more than 24 percent of the mean pre-slbiing birth observation level. 83 Analysis of the changes in nine categories of the interaction of verbal exchange showed that there were significant changes in five of these: An increase in frequency of verbal exchange initiated by mother prohibiting the child, and significant decreases In the frequencies of positive inter- action inltiated by mother, as well as the percentage of verbal interactions started by mother's positive comments. A correlation matrix was formed using the Spearman Rank Correlation to study measures of mother and child behavior in the pre-slbling period. There were significant positive correlations between measures of maternal showing, high- lighting features of whatever was the current focus of the child, and joint play between mother and child. The above measures were negatively correlated with a group of measures reflecting maternal attempts to control the child. The group of measures reflecting "control" was positively related to child behaviors of fussing, wandering, sitting without playing, and to the incidence of the child looking at the mother without the mother looking at the child. The Spearman Rank Correlations between measures from the post-sibling observations were then examined; the relation- ship between the same 18 variables studied in the pre-sibiing birth observations were analyzed. There were marked changes from the pre-slbllng observations In the relationship between some of the measures of child behavior. Among the most pronounced were wandering, sitting, fussing, and verbal demands for objects. in the pre-sibllng observation, for s‘CW Shoi Tilt 1111 in I n bir Sat r81 res SUIT 84 example, a high frequency of wandering was associated with a low frequency of joint play, a low frequency of maternal showing and suggesting (highlighting). was associated with a high frequency of prohibition and confrontation, and a high frequency of the child looking at mother without a reciprocal gaze. in the post-sibling observation, this correlation pattern had changed. Some of the children with playful and permissive mothers spent a relatively high proportion of their time wandering around aimlessly and sitting without playing. Most children in the studies experienced a decrease in maternal playful attention with the infant's arrival. This decrease in maternal attention was reflected in the more subtle aspects of sensitivity to the child's Interest such as showing and suggesting behaviors, initiation of conversation with verbal games, and suggestions. A general change in the balance of responsibility for initiation of interactions between mother and child was noted in conversation, in play, and in attention to a common focus. in most families, the first-born child following sibling birth became responsible for a greater proportion of conver- sation initiation, and the mothers for a correspondingly smaller proportion. Dunn and Kendrick (1980) state that the change in the relationship links, in an important way, with the individual responses in children's behavior over this period. in summary, Dunn and Kendrick (1980) have reported a decrease in the ACC Oil! rec at car an 0M Se 08! I110: iii: 85 maternal attention and play, an increase In confrontation, and changes in the balance of responsibilities for Initiating interactions with the first-born child following the birth of a sibling. Felring, Lewis, and Jasker (1983) conducted a longitudinal study of the effect of a new sibling on mother/ first-born child Interaction during the first two years of life. Observations were made of mothers and children in a laboratory play setting. The children were 12 and 24 months of age. The study sample consisted of 49 first—born children. At 12 months, none of the children had experienced the birth of a sibling; and at 24 months only nine children acquired a sibling, leaving the remaining 40 children as the only child until 48 months. The methodology of the study required laboratory observation of mother-infant dyads while at play. The dyad was placed in a playroom marked with carpet squares and containing 13 toys, a chair, a table, and a magazine. The dyad was observed and videotaped through a one-way mirror during a 15-mlnute free play, a three-minute separation of mother and child, and a three-minute reunion period. For analysis of general categories of behavior, mothers' behaviors were grouped as proximal (i.e., touching, kissing, holding, and seeking proximity) and distal behavior (l.e., vocalizing, looking, smiling, giving directions). infant behaviors were grouped as proximal (i.e., touching, lap seeking, holding, hugging) and distal (l.e., vocalizing, looking, smiling, fretting, and crying). tine notr '1! ‘3 ‘rH to Der Sit 86 Analysis of variance on mean differences at the 12- and 24-month observations was performed, in order to determine If differences existed at each of the age points, as Influenced by sibling group and sex. Repeated analysis of variance on child's and mother's behavior measures at 12-to- 24 months was conducted in order to examine changes over time. Discriminate analysis was also performed separately on mother's and child's behavior, in order to determine the behaviors that distinguished first-born with sibling (Group A) from first-born without siblings (Group B). The data suggest that, at two years of age, the children with siblings showed a tendency to Increase dependency behavior toward their mothers. First-born children with early acquisition of a sibling (Group A) show a greater increase in seeking help from mother during the period from 12-to-24 months. At 24 months "early first“ children show a significant sex difference In help-seeking behaviors, with female siblings seeking the most help from mother as compared to the male sibling. A significant increase In crying behavior is shown in the 24—month age group with a new sibling, with the male sibling group crying the most. In general, the data suggests that the children with a new sibling exhibit a tendency toward dependent behaviors and are more fussy at 24 months of age, especially with close spacing of children. The sex of a child appears to play a role In the early expression of the "dethronement" phenomenon, with the male sibling expressing insecurity through increased :fyin acre :erav :1 ffe'. lihethi and ar schavl 88 in! 24-mon Sumner on Fir The to< disrupi “View: DL the her in the DerCent 87 crying and seeking close proximity to mother; and females are inore likely to demonstrate Increased help-seeking behaviors. Results of the discriminate analysis on the social behavior of mothers suggested that mothers as a group behave differently toward their first—born children, depending on whether they had a second child. Mothers with a first-born and an infant were characterized by more proximal and distal behaviors but less toy play. in conclusion, this study must be interpreted with caution due to the small sample of nine 24-month siblings, five males and four females. Summary of the Literature Review of Effect of Sibling Birth on First—Born Child The two studies reviewed reveal some common findings. The toddler-preschool first-born sibling displays behavioral disruption with the birth of a new sibling. in the studies reviewed, only the mothers were observed. Dunn and Kendrick (1980, 1982) found marked changes In the behavior of the first-born child following sibling birth in the areas of demanding behavior directed at mother. Fifty percent of these children displayed an Increase In clinging and tearful behavior, regression, sleeping problems, and imitative behaviors. The researchers also found a decrease In maternal attention and play and an increase In confronta- tion. The balance of responsibility for initiating inter- actions with the first-born child had changed in that the first-born was Initiating more interactions than the maternal parent. Feirlng et al., (1983) suggested that (T tr 6V1 FE! 88 'bwo—year-old first-borns show an Increased tendency toward irritability and dependent behavior following sibling birth. isummar The review of the existing literature in the areas of apnea, home management, siblings of chronically lIl children, and siblings of new-born children reveals a variety of findings and few consistent trends. 1. A correlation between sleep apnea and SIDS has not been proven. 2. One study concluded that infant deaths could be prevented with the use of home apnea monitoring and parents trained in CPR. 3. Five studies Identified the monitor as a stressful event for the family Including parental anxiety and restrictions on social life. 4. Only three studies of sibling response to chronic illness Included siblings under five years of age. School age children were the most frequent age group studied. 5. Due to the variety of methods of data collection, the wide age range, and the instruments used it was impossible to draw conclusions relative to study outcomes concerning the impact of chronic illness on the well sibling. 6. The toddler-preschool firstborn displays behavioral disruption in the areas of demanding behavior, clinging behavior, regression, sleeping, and initiative behaviors following the birth of an infant sibling. 89 The multitude of variables in the reviewed research concerning sibling responses to Illness made objective study results hard to compare and consistent patterns difficult to identify. Additionally, the younger child is more problematic to study although it is evident that the younger sibling is affected by the family crises. Many of the studies reviewed used parent perception tools to gather young sibling data. This method in Itself has many pitfalls as described In Chapter One. Chapter Four will describe the research methodology and procedures used In this study. CHAPTER FOUR Overview An increased number of infants are being monitored in the home for apnea with the parent(s) as caregiver(s). Several authors have researched the impact of the monitor on these parents (Black et al, 1978; Cain et al, 1980; DiMaggio et al, 1983; Goetz, 1981). However, studies that address impact on siblings during the Infant monitor experience are not present in the literature. This research study was designed to describe how siblings (age two-to-flve years) of home-monitored infants are affected in certain areas of psychosocial and cognitive development as perceived by the mother. Sibling interaction, regression, aggression, and anxiety (both of stranger and of separation) are dimensions included In the variables of psychosocial development that have been addressed in this study. The dimensions of cognitive development include exploratory behaviors, memory/language, and fantasy/ Imagination. An Instrument, the Sibling Developmental Issues Tool, has been developed by the author to measure these dimensions of cognitive and psychosocial development. In this chapter the research methods and the procedures to protect human rights are described. in particular, the discussion of research methods addresses the definition of variables, the sample selection, and the data collection procedures. The Instrument and scoring information, as well 90 91 as the statistical analysis to be performed on the data, are also presented. Research Desigg The research methods used parent—report survey tools. The statistical analysis included both Inferential and descriptive statistics. The mother of the monitored infant with a sibling age two-to—flve years living In the home was asked to complete a questionnaire containing socio— demographic data and the Sibling Developmental issues Tool (see Appendix C). Demographic variables used to describe general characteristics of the sample-—speclf|caliy characteristics of the mother, the family, the monitored Infant, and the two-to-five-year-old sibling. The Sibling Developmental Issues Tool was used to identify the mother's perception of behavior changes in the two-to-flve-year-oid Sibling during the monitored period. The subjects In this study sample participated voluntarily. Sample A convenience sample of 22 mothers contained all the subjects for this study and was selected from several sources. Two sites Included the Apnea Support Groups of the Hillsdale and Kalamazoo areas. Families who completed the home-monitor programs were referred, with their permission, to the community Apnea Support Groups. The purpose of the support group is to provide information and support to families who are caring for their infants on home monitors. as mo of Sc SL or CE Ml 92 There were also five local monitor companies that assisted In sample selection. Each family who has a monitored infant is assigned a staff member employed by one of the five main monitor companies that serve the Southwestern Michigan area; namely, Foster, Glassrock, Plaza Supply, Allegan Home Health Services, and Care—Tech. These providers maintain the mechanical functioning of the monitor and assist the families with problems related to monitor care. Finally, the new SIDS Research Center at Bronson Methodist Hospital was Opened in the fall of 1986. In January of 1987, the Bronson Hospital Research Committee approved the use of the SIDS Center as a data collection site (see Appendix A). This equals a total of eight sites. Subjects were selected for inclusion in the study according to the following criteria: 1. Mother currently caring for a monitored infant whose age does not exceed 12 months of age. 2. infant is the first child in the family to be on a home monitor. 3. infant has a sibling in the age range of two to five years living in the home. 4. Mother will select only 923 child in the two-to-five year-old age range for whom the questionnaire will be completed. Operational Definition of Variables The variables under consideration for this study measured the impact of the infant monitor experience on IA 93 psychosocial and cognitive development of the two-to-five— year-old sibling as perceived by the mother. The operational definitions of the above variables are presented as follows: 1. Psychosocial development was operationailzed and presumed to consist of four dimensions; namely, sibling interaction, regressive behavior, aggressive behavior, and stranger and separation anxiety. 2. Cognitive development was also presumed to consist of three dimensions of exploratory behavior, memory/language, and fantasy/Imagination. The variables that were hypothesized to measure the selected psychosocial and cognitive dimensions were defined in terms of the mother's responses to the 69 items on the Sibling Developmental issues Tool (SDIT) (see Appendix 0). Each Item listed a statement about a particular behavior. Respondents were asked to indicate on a five—point Likert type scale whether the behavior or activity occurred (1) much less than before, (2) slightly less than before the infant/ monitor, (3) same as before infant/monitor, (4) slightly more than before Infant/monitor, and (5) much more than before Infant/monitor. Behaviors that were not observed by the mother were indicated in the "not applicable“ column. The mothers were requested to mark the response that pest depicts their perception of each behavior in the two-to-flve—year-old Child. 94 Variables Measurjgg_the Dimension of Psychosocial Development Sibling interaction was defined as communication patterns used by the sibling to relate to parents, infant, and other siblings as perceived by the mother. This concept was operationally defined and presumed to be measured by 11 Items on the SDIT (see Appendix D). For example: "Does your child behave in a manner that indicates jealousy of your time with and concern for your infant?“ aggressive behavior was defined as behaviors that indicate retreatment to a less mature state associated with an earlier developmental stage (Barker et al, 1976). This variable is operationally defined and presumed to be measured by eight Items on the SDIT (Appendix D). An example could be: ”Does your child have daytime toileting accidents?“ Aggressive behavior was defined as complex individual behaviors in which a kind of energy is built up within each person that must be periodically discharged (Montagu, 1976). The discharge of this energy as perceived by the mother was thought to be measured by 13 items on the SDIT (see Appendix D). For example: "Does your child have temper tantrums or anger outbursts?“ Anxiety encompasses two definitions--stranger and separation anxiety. Stranger anxiety Is the tension felt by a young child when introduced to an unfamiliar person. Separation anxiety was defined as the fear experienced by a young child when he/she is removed from a familiar person, S.) (I) C, (I! L) 95 subject, or environment (Bowiby, 1973). Eleven items on the SDIT were operationallzed and hypothesized to measure anxiety (see Appendix D). For example: "Does your child have difficulty going to sleep at night?" Variable Measuringgpimensions of Qggnitlve Variable Exploratory behavior was defined as behaviors involved in the act of investigation to acquire knowledge, as perceived by the parents. Seven statements on the SDIT were presumed to measure this variable (see Appendix D). For example: "Does your child seem interested in or curious about his/her surroundings?" The areas of memory and language are intricately related. Memory was defined as the ability to recall previously learned or past experiences and is intimately related to all cognitive processes (Kali, 1950). Language development was defined as the process by which the child develops the ability to communicate thoughts and feelings by verbal sounds. These concepts of cognitive development were presumed to be operationally defined by 10 items of the SDIT (see Appendix 0). Example questions were as follows: ”Does yourchlld speak rapidly and/or stutter?" "Does your child use words to tell you about objects, actions, or events in the past?" Fantasy/imagination was defined as a connected series of mental images, or mental play (Fraiberg, 1959). Nine st: (Si lTTIi ’9“. UV Sb‘ (1 1; 96 statements on the SDIT were assumed to measure this concept (see Appendix D). For example: “Does your child have an Imaginary playmate?" in summary the eight dimensions of psychosocial and cognitive development were thought to be represented by seven subscaies incorporated in the Sibling Developmental Issues Tool, as explained in this chapter. Moderating Variables in order to study the mother's perception of the impact of the monitored infant on sibling (age two to five years) psychosocial and cognitive development, it was necessary to collect data on other variables that may influence the study outcome. Information about the mother and family includes age, sex, ethnic background, marital status, level of education, occupation, family Income, and age of children (see Appendix 0). Three sections of variables were identified from the soclo-demographlc questionnaires: (1) Mother and family soclo-demographic data, (2) infant monitor data, and (3) child (age two to five years) data. Variables in this area included: 1. Age of mother responding to questionnaire, as well as birth date and sex of infant and sibling, are measured by six items (numbers 2, 15, 16, 28, and 29) (Appendix C). 2. Ethnic background (item number 3) (Appendix C). 3. Marital status (item number 4) (Appendix C). var": v I MU mo DI’ a! 97 4. Educational level, occupation, and income of family members are measured by seven items (numbers 5, 6, 7, 8, 10, 11, and 12) (Appendix C). 5. Family composition is measured by three Items (numbers 9, 13, and 14) (Appendix C). 6. Age of infant when placed on monitor and length of monitoring is addressed in two items (number 18 and 19) (Appendix C). 7. Reasons for infant monitoring Is addressed in Item number 20 (Appendix C). 8. Other infant illnesses including type of illness/congenital problem is addressed In two items (number 21 and 22) (Appendix C). 9. Mother's perception of stress level during the monitor experience consists of one Item (number 23) (Appendix C). 10. Mother's Involvement in a home-monitoring teaching program is measured by one item (number 24) (Appendix C). 11. Mother's Involvement In support group ls measured by three items (numbers 25, 26, and 27) (Appendix C). 12. Health problems of the two-to-five-year-oid sibling are identified in two items (numbers 30 and 31) (Appendix C). 13. involvement in sibling preparation classes for new infant is measured in item number 32 (Appendix C). Having defined and operationallzed the variables for this study, protection of human rights are explained. 98 Protection of Human Rights The study participant rights were protected during the data collection by following the Michigan State University Committee of Research Involving Human Subjects Protocol. The protocols and criteria for this study were approved by the committee before data collection was Initiated. Approval for this research was also obtained from Bronson Methodist Hospital In February of 1987. Prospective subjects received a brief letter to Introduce the study, delineate the purpose, and seek their participation. This letter was given to prospective subjects by the chalrpersons of the Apnea Support Groups, the supervisors of the monitor company, and the SIDS Research Center coordinator. This gave the subjects the opportunity to decline contact with the researcher (Appendix 8). Those mothers interested in participating in the study mailed a postcard to the researcher. Upon receipt of the postcard, the researcher mailed a packet to the mother which contained a follow—up letter, consent forms, and the questionnaires. Subjects were also assured that their names and responses would remain anonymous and that they were free to terminate their participation in the study at any time. Additional study details and participant rights were included (Appendix 8). Two consent forms were enclosed In the packet; one consent form remained with the mother, and the second consent form was signed by the parents before completion of the an tw mo Ye th 99 questionnaires. A summary of the results was offered to the subjects. Upon receipt of the returned questionnaires, the researcher separated the Identifying data from the questionnaires and used only the coded data for analysis. The researcher also specified that participants' questions would be answered at any time with the researcher‘s name, address, and phone numbers made accessible to the subjects. Research Instruments The Sibling Developmental issues Tool (SDIT) used in this survey was developed by this researcher. The Personality inventory for Children (Wirt, Seat, & Broen, 1977) and the Vineland Adaptive Behavior Scale (Sparrow, Baiia, & Clcchetti, 1984) were used as guides In developing an Instrument which measured the mother's perception of her two—to-five—year-old child's behavior In relation to the monitored infant. The Sibling Developmental issues Tool (SDIT), a 69-Item questionnaire, was developed by the researcher following an extensive literature review of psychosocial and cognitive development of the two—to-flve- year-old child. Each item in the questionnaire. subject to confirmation through a reliability test, described a behavior which addresses the subconcept In question. For each item listed, the mothers were asked to indicate which of the five responses most accurately describes the frequency of the behavior related to the sibling of the monitored Infant. 0,7 7! ti (D a l 100 Each of the eight subconcepts were addressed in several question Items to promote greater instrument reliability. These items were then randomly ordered. For example, the SDIT measuring the mother's perception of sibling Interaction has 11 questions addressing this specific area. Reliability Reliability was defined as the degree of consistency and dependability with which an instrument measures the attri- butes It is designed to measure (Poilt & Hungier, 1983). Reliability can be equated with the stability, consistency, or dependability of a measuring tool (Kerlinger, 1974). Stability refers to consistency of the measures on repeated applications of the Instrument. Determination of the stability of a measuring tool Is accomplished through a test-retest reliability procedure (Williamson, 1981). The researcher administers the same test to the same sample on two occasions and compares the scores obtained by computing a test-retest reliability coefficient. The test-retest approach to estimating reliability has several disadvantages: 1. An Individual in the sample may be Influenced by the effect of the first test. 2. The individual may experience a change in attitude, behaviors, or knowledge over time and between the two test administrations. 3. There may be transient personal factors at the times of testing that change the test response (Williamson, 1981). 101 in any case, the test-retest stability measure of reliability will not be applied to the SDIT as there are no repeated measurements in this study. Another Interpretation of reliability refers to the consistency of an instrument. An Instrument is considered to be Internally consistent or homogenous to the extent that all of its subparts measure the same characteristics (Poiit & Hungier, 1983). Estimating the internal consistency of the instruments provides the researcher with information concerning the influence of errors due to content sampling (Williamson, 1981). in the theory of measurement error, the primary concern is with item sampling. it is assumed that each person has a hypothetical true score, one that would be obtained If there were no errors of measurement (Nunnaliy, 1978). The difference between the true score and the obtained score Is the result of the many factors that affect this score. The major source of error within a test is due to the sampling of Items; for example, including Items In the instrument that are outside the domain of the construct (Nunnelly, 1978). Sampling errors are decreased by increasing the sample size. Consequently, reliability measures will be higher as the number of test items is increased (Nunnelly, 1978). in this study, the Cronbach Alpha was used to determine the reliability (l.e., the internal consistency) of the SDIT. This statistic provides an average measure inter—item as “V my ad 102 correlations for all items comprising a scale and represents the best estimate of Internal consistency (Williamson, 1981). The coefficient alpha score ranges from 0.00 to 1.00, with the higher score reflecting internal consistency (Borg & Gail, 1979). Reliability coefficient in the area of .70 are considered sufficient for assuming scale consistency. Equivalence refers to the extent to which different, but parallel, Instruments may be applied to the same population at the same time, or by different researchers using the same instrument to measure the same attributes at the same time (Williamson, 1981). The purpose is to determine the equivalence of the instrument(s) in yielding measurements of the same traits in the same subjects. Under the first condition, the method of reliability discussed is parallel forms. In this method, two forms of the instrument are developed and administered to the same individuals at the same time. Estimates of reliability are determined by comparing the two individual measures using correlationai statistics. Measures of equivalence can be determined when comparing the results of different investigators using one instrument to measure the same individuals (Williamson, 1981). This Is referred to as inter-rater reliability. An investigator is concerned with inter-rater reliability when the nature of the instrument is such that the observer's Influence can contribute to errors of measurement. The parallel form of equivalence will not be computed on the SDIT because of the time element in devising I vi 5? E) N (f 103 two test forms and retestlng the small sample population. Furthermore, Inter-rater reliability Is not appropriate for the SDIT. Validity The validity of an instrument refers to the degree to which the Instrument measures what it is Intended to measure (Williamson, 1981). The data provided by an instrument should be relevant to the characteristics being measured. The validity of an instrument can also be defined as the extent to which the differences in the scores reflect 5:23 differences among individuals on the characteristics that the researcher seeks to measure (Williamson, 1981). Instrument validity is extremely difficult to establish, especially in psychologically oriented measures (Poiit & Hungier, 1983). Three types of validity and their relevance to the Sibling Developmental issues Tool will be discussed. The first type, content validity, is the "representa- tiveness“ or sampling adequacy concerning the content of the measuring Instrument (Kerilnger, 1973). Content validation is basically judgmental, as each test item must be evaluated for its presumed relevance to the property being measured. This can be accomplished by the use of content experts who will judge the content of each item. The SDIT was submitted for evaluation of content validity, including instrument direction and readability, to a psychologist with expertise in child development. This investigator's thesis committee and three pediatric nurses Involved in home apnea monitor teachi revlsi aCSFO estim :0 tr the C funci test Valli CF80 the lnfe 1981 diff Inst Insi fFan Vela emp 0f; CChi meal 104 teaching programs also evaluated the tool. The tool was then revised according to the suggestions of the content experts. Predictive Validity, the second type of validity, is apprOpriate when the purpose is to use an instrument to estimate some form of behavior or criterion that Is external to the measuring instrument itself (Nunnelly, 1978). After the criterion is obtained, the validity of a predictive function is determined by correlating scores on the predictor test with scores on the criterion variable. The predictive validity of the SDIT will not be measured as the tool's predictive value is not known. The third type of validity, construct validity, Involves the aggregation of empirical evidence to support the inference that a particular measure has meaning (Williamson, 1981). The examination of construct validlty--a most difficult task--lnvoived validation of not only the measuring Instrument, but of the theory underlying It. The measuring instrument needs to be related to an overall theoretical framework in order to determine whether the instrument is related to the concepts and theoretical assumptions that are employed (Williamson, 1981). There are three major aspects of construct validation: 1. Specifying the domain of observables related to the construct. 2. Determining the extent to which the observables measure the same thing, several different things, or many 'fl flfi‘ ‘Il at 105 different things obtained from empirical research and statistical analyses. 3. Performing studies of individual differences and/or controlled experiments to determine the extent to which the measures of the construct produce results that are predictable from accepted theoretical hypotheses concerning the construct (Nunnaliy, 1978). The way to test the adequacy of a domain, related to a construct, is to determine how well the observable measures fit together in empirical investigations. One common approach to construct validation is the "known group techniques." In this approach, groups are expected to differ because of differences in characteristic on critical attributes known to be related to the construct. Factor analysis ls another technique used in construct validation (Kerilnger, 1973). It is a method of identifying clusters of related variables (Polit & Hungier, 1983). Each cluster, called a factor, represents a unitary attribute. Factor analysis can reduce a larger number of measures to a smaller number by identifying which measures are similar and the relationships between the clusters (Kerilnger, 1973). Tests for construct validity are beyond the scope of this study due to the small population size and the preliminary descriptive nature of this investigation. Scoring Scoring procedures for the SDIT are based on a five— cholce Likert type scale given to each item. The assignment of a numerical value will occur in ascending order from one 106 to five, from "much less than before monitor" to "much more than before monitor," with the latter being assigned the score of five. A mean score was calculated for each subject and subsequently reported in Chapter Five. Subjects who had a mean score of 3.0 indicated no change In the frequency of measured behavior since the monitor according to the mother's perception. A mean score from 1.0 to 2.5 indicated a decrease in the frequency of behavior since the monitor according to the mother's perception. A mean score between 3.5 to 5.0 indicated an increase in the frequency of measured behaviors since the home monitor according to the mother's report. The four subconcepts' mean scores surveyed in the psychosocial area and the three subconcept mean scores of cognitive development were scored separately. In this manner, comparisons will be made between subscale scores to determine specific areas of impact In the sibling population, as perceived by the mother. Data Collection Procedures Following permission from the research committee, the researcher contacted the chairperson of the Apnea Support Groups of Hilisdaie and Kalamazoo, Michigan, the SIDS Research Center, and five monitor services; namely, Foster, Glassrock, Plaza Supply, Allegan Home Health Services, and Care-Tech to explain the purpose of the study. An abstract of the research proposal, consent forms and questionnaires, were provided for review. The study project was presented to the chairpersons of the two support groups, the SIDS Research 107 Center coordinator, and five monitor services, in order to seek endorsement by the groups and to seek assistance in the identification of mothers who are currently monitoring Infants in the home. In addition, the researcher provided a letter for distribution at sites to recruit potential subjects. The letter contained a description of the study and also requested parent participation (Appendix B). The chairpersons/supervisors at the sites offered the letter of Introduction to those mothers who fulfilled the study criteria. This allowed the client to decline contact with the Investigator. A self-addressed and stamped reply postcard was attached to each letter. Parents who met the established criteria indicated their willingness to participate in the study by mailing the postcard to the researcher. Subjects expressing a willingness to participate, and who met the criteria, were contacted by telephone by the researcher to answer questions and explain the purpose of the study. Furthermore, the content of the questionnaires as well as the time needed to complete the questionnaires and the consent forms was explained to the subjects over the phone. The assurance of confidentiality was emphasized, plus the fact that neither refusal nor agreement to participate would affect present or future health care. A research packet was mailed to those families who were enrolled In the study. The packet contained a cover letter which instructed 108 the subjects to complete the two questionnaires, as well as the consent forms delineating participant rights (Appendix B). Mothers were instructed to complete the designated consent form and questionnaires and return them to the researcher in a self—addressed, stamped return envelope. A telephone call was made to each participant who failed to return the questionnaires within two weeks, and prompt return of the questionnaires was encouraged. Questions which arose during administration of the tool were answered by the investigator. A code number was assigned to each mother who returned the set of questionnaires. Data from each questionnaire were coded and entered into a data log sheet. The raw data were destroyed after completion of the study. Ongoing contact was main- tained at each site by the investigator to insure continuity of the selection procedure and to provide a channel of communication with the participating sites. A pretest of the instrument was performed using three parents who have cared for their infant on a monitor with a two-to-flve-year-old sibling living in the home. The researcher was unable to use parents for the pilot study who were currently monitoring infants due to the threat of Inadequate sample size for the major study. individuals who participated in the pilot study were questioned concerning their reactions to the instrument and overall impression of the study. 109 Data Analysis Procedures The data analysis was designed to answer the original two study questions: 1. According to mother's perception, how is the psychosocial development of the (two-to-five-year-old) sibling affected by the monitored infant in the areas of sibling interaction, regression, aggressive behaviors, and stranger and separation anxiety? 2. According to mother‘s perception, how is cognitive development of the (two-to-flve-Year-old) sibling affected by the monitored infant In the areas of expiorative behavior, memory/language development, and fantasy/imagination? To answer the stated research questions, descriptive statistics were computed on the Sibling Developmental issues Tool outcomes in the following manner: 1. Frequencies were run for the seven subconcept scores of the SDIT. Percentages were used to indicate the proportion of siblings that were perceived to have increased, decreased, or not to have changed certain behaviors. 2. To measure the central tendency of a distribution of scores on a scale, means were calculated for the total psychosocial and cognitive scores as well as the seven subscores. A mean is the point on the score scale that is equal to the sum of the scores, divided by the number of scores (Kerilnger, 1975). in addition, the age groups were divided in half at the median point. The median is a point on a numerical scale above which and below which 50% of the 110 cases fail. The median division enabled the researcher to compare the younger to the older sibling scores. 3. The variability of the scores was measured by standard deviation. The concept of variability describes how data depart from their centrality (Williamson, 1981). The Standard Deviation (SD) is a measure of how much the values deviate from the mean. More precisely, it is defined as the square root of the difference of each value from the mean. The standard deviation statistic describes an important <3haracterlstic of a distribution and can be used to interpret the cognitive and psychosocial scores. 4. Finally, Pearson product moment correlations were computed between the subscale scores of the SDIT, using the .05 level of statistical significance (Williamson, 1981). These correlations were used to evaluate the relationship among the subscaie scores of the SDIT. The r is a numerical index that expresses the direction and magnitude of a linear relationship. The value ranges from a -1.00 to +1.00. All values that fall between the -1.00 and 0.00 represent a negative relationship, and values computed between 0.00 and +1.00 represent positive relationship. The data analysis also covered additional questions addressed in the study. They included: 1. How does the level of mother's stress affect her perception of sibling impact? 2. Is there a difference in the younger versus the older sibling in degree of impact as perceived by mother? 111 3. Does the length of time on the monitor affect the sibling scores as perceived by mother? 4. Does attendance in support group affect sibling scores as perceived by mother? Again, the Pearson Product Moment Correlation was employed to address the relationship between the SDIT subscale scores and mother's reported stress, as well as length of time on the monitor. To explore the impact of the (nominal variable) support group attendance and the (grouped 'varlable) sibling age, a one-way analysis of variance was employed to see if the means on the subscaie differed between groups. This statistic describes the variability between and within these groups (Polit a. Hungier, 1983). Summary in Chapter Four an overview of the research design, study sample, and sample selection criteria were specified. Variables were operationally defined and measurement methods described. Standard procedures to protect the rights of the research subjects were explained. The instrument, including reliability and validity tests, and scoring was discussed. Data analysis procedures were presented. Descriptive statistics were computed for the socio-demographic questionnaire, as well as the Sibling Developmental issues Tool. Responses to the 69-item SDIT questionnaire were submitted for data analysis with the purpose of measuring several dimensions of the mother's perception of the sibling. 112 The results of the data analysis will be presented in Chapter Five. CHAPTER FIVE Data Presentation and Analysis introduction in this chapter the data will be described and analyzed. First, the results of the pilot study will be presented. Then the sociodemographic characteristics of the subjects ‘wlll be described. Next, the discussion will center on the reliability of the subscaies of the Sibling Developmental issues Tool (SDIT). Finally, correlationai techniques and .analysis of variance will be used to answer the major research study questions as well as the related subquestlons. Results of Pi lot Study A pilot study of the SDIT Instrument was conducted with three volunteer mothers who had cared for home-monitored infants with a toddler-preschool sibling living in the home during the past year. The pilot sample of three mothers was selected from the Southwestern Michigan Apnea Support Group who volunteered to test the instrument for readability and the identification of potential problems in the administration of the instrument. The data obtained from the three mothers were not included in the final study results. The following changes were made in the SDIT based on the pilot study: 1. The addition of a "not applicable" column to be placed to the left of the Likert scale. This allowed for the Identification of behaviors that had never been observed by the mother . 114 2. The addition of a sentence which Instructed the mother how to use the "not applicable“ column (see Appendix D). 3. Question 12 was changed from "Usually play alone" to "Play alone" for better readability. Descriptive Findings of the StudyiSample Following the procedure outlined and approved for procurement of the sample, five monitor companies, two parent lapnea support groups, and finally the new SIDS Research (Center were approached by the investigator. A total of 25 questionnaires were returned over a six-month period; however, only 22 mothers met the study criteria which included: 1. The mother lives in the home with the monitored infant. 2. The currently monitored infant Is no older than 12 months of age. 3. This Infant is the first child In the family to ever be on a monitor. 4. A sibling between the age of 2 and 5 years lives in the home with the infant on a monitor. Sociodemographics of the Sample Study subjects were classified according to site, mother's personal characteristics, spouse or significant other's occupation, and Income. in addition, information on siblings and the Infants (including some basic medical information) is presented below in Tables 1 through 6. 115 Sites Where Data Collected. Three sites——namely Glassrock, Plaza Supply, and the SIDS Research Center—— had four mothers each who participated in the study. Care- Tech and Hiiisdaie Apnea Support Group followed with three Inothers who participated in the study. The remaining sites-- Allegan Home Health Services, Foster, and the Apnea Support Group of Southwestern Michigan-—contributed one to two clients. (See Table 1.) Mothers' Age. The age of the mothers ranged from 19 to 35 years. The mean age was 27 years with SD of 4.54 (see Table 2). 5333. The majority of the population was Caucasian (N = 19, 86%) with two black (9%) and one oriental (4%) mother. Marital Status. The majority of the mothers (N - 19, 86%) were married, two (9%) reported being single, and one (4%) was widowed. Education of Mothers. The levels of education varied considerably among the respondents. Three mothers (14%) reported partial high school completion while seven (32%) reported completion of high school. Eight (36%) of the mothers had a partial college education. Three (13%) had completed four years of college, and one mother (4.5%) had gone beyond four years of college. (See Table 3.) Work Status of Mothers. Eleven (50%) of the mothers were full-time homemakers, while another 11 (50%) worked outside the home. Eight (72%) of the mothers worked part- time, and three (14%) of the mothers worked full-time. Table 1 Name of Sites Where Data was Collected and Number and Percentage of Subjects from each Site Category Number Percentage (%) Site N a 22 100.00 Allegan Home Health Services 1 4.5 Care-Tech 3 13.6 Foster 1 4.5 Glassrock 4 18.2 Hillsdale Apnea Support Group 3 13.6 Plaza Supply 4 18.2 SIDS Research Center 4 18.2 Southwestern Michigan Apnea Parent Support Group 2 9.1 TOTAL 22 100.00 Table 2 Age of the Mothers - Number and Percentage Category Number Percentage (%) Age N - 22 100.00 19 - 22 4 18.20 23 - 25 6 27.20 26 - 29 4 18 10 30 - 32 5 22.60 33 - 35 3 13.50 TOTAL 22 100.00 [Mean Age - 27 years] Table 3 Mothers' Educational Level — Number and Percentage Category Number Percentage (%) Education N - 22 100.00 Partial High School 3 13.6 Completion of High School 7 31.8 Partial College Education 8 36.4 Completion of Four Years of College 3 13.6 Beyond Four Years of College 1 4.5 TOTAL 22 100.00 119 Occupation of Mothers. Among the 11 mothers who worked, F i\/e (42%) reported working in clerical positions. Three (25%) were reported to be in professional positions, and two ( 1 17%) reported skilled worker positions. One mother was In an executive position. Husbands' Educational Level and Occupation. One spouse ( 4 - 5%) completed junior high school and one (4.5%) completed EDEil’i:ial high school. Four spouses (18%) were high school Slr‘21c1uates. Ten (45%) of the 19 spouses had completed partial <:<> I Iege while one (4.5%) completed four years of college. 'Tvvc> spouses (9%) were reported to be educated beyond four years of college. Spouses‘ occupations were reported as the 1:01 lowing: Five spouses (22.7%) were in professional Dosltlons, eight spouses (36%) were skilled workers, and six ( 27%) of the spouses were semi-ski I led or unskl l led workers. Family income. The income per household ranged from Iest: than $10,000 a year (N .. 1, 4.5%) to above $60,000 a year (N - 1, 4.5%). The average income was between $20,000 Ea'Wd $30,000 a year (N a 8, 35%). Number and Ages of Children Living in the Home. The r‘knnber and ages of the children regardless of family is Dresented in Table 4. Thirteen (59%) of the families had two ehi idren living in the home, the monitored infant, and the ( two-to-five-Year-old) sibling. Seven families (31%) had triree children living in the home, and two families (9%) had F(bur children living in the home. The age distribution of tifie children was as follows: Twenty-one families (91%) had 120 one monitored Infant between the age of newborn to one year, while one family (4.5%) had two infants In this age range. E l ght families (36%) had a child living in the home between one and three years of age. Fourteen families (64%) had a ch lid between three and six years of age in the home. Seven Families (32%) had a child living in the home in the age range of slx—to-nlne years, whi ie one faml iy (4.5%) reported two children in this age group. One child (4.5%) was reported In the nine-to-12 year age group. No siblings 12- t0— 18 years of age were reported In the study. (See Table ‘4. ) Sex of Siblinge. There were 10 females (45%) and 12 r""‘ales (54%) reported in the sibling sample. Infant Age in Months. The infants' age ranged from two months to nine months of age, with the mean age of the infant being five months. Birth Weight of infants. infant weight at the time of ‘3 Irth ranged from three pounds (9%) to 11 pounds (9%). The t“eaiin weight was 7.3 pounds. The weight of the infant was r—<>unded to the nearest pound. Sex of infant. The infant sample consisted of 13 males ( 59%) and nine. females (40.9%). Ageiof infant When Placed on Monitor. As can be seen in Table 5, most infants were placed on the monitor within the F lrst 20 days after birth. The mean age was between 11-to—20 days, while all infants in the sample had been placed on the mOnltor after two months. (See Table 5.) 121 Table 4 Ages, Number and Percentage of Children Liviniln the Home Category Number *Percentage (%) O — 1 yr 23 43.0 1 year 1 day - :3 years 8 15.0 3 years 1 day — 6 years 14 26.0 6 years 1 day - 9 years 8 15.0 9 years 1 day — 1 2 years i 2.0 TOTAL N - 54 100.00 a"'Dased on total number of chi ldren 122 Twabie 5 Age of infant When Placed on Monitor — Number and Percentage .___———f Category Number Percentage (%) Age When on Monitor N = 22 100.00 0 - 10 days 7 31.80 11 - 20 days 8 36.50 :21 - 30 days 4 18.20 31 - 40 days 1 4.50 -41 - 50 days 1 4.50 51 - 60 days 1 4.50 TOTAL 22 100.00 123 Length of Time infant was on Monitor. Due to the uneven spacing of the intervals and-one open interval in questions 1 9 of the sociodemographlc questionnaire, the precise length 0 f' time on the home monitor cannot be computed. The average 1 ength of time the infant was home monitored fell somewhere between four and six months of age. (See Table 6.) Reason for Monitoring. An abnormal pneumogram was reported (N = 19, 86.4%) as the most frequent reason for the home monitoring. Observed apnea and/or bradycardla (N = 13, 59 - 1%) was the second-most-stated reason for monitoring. On I y one mother (4.5%) reported prematurity as the reason for mon Itorlng. Three mothers (13.6%) reported previous SIDS cSeath In the faml iy as a reason for apnea home monitoring. TWO reasons for monitoring at home were given In (63.6%) of t he cases . illness of Infant. Most of the mothers (90%) reported that the infants did not have any other known illness other than the apnea. Two mothers (9.1%) reported the presence of other Illness. One mother reported frequent respiratory i hfectlons. One mother reported a congenital heart defect ( Ventricular septal defect). Sibling Health Problems. Most mothers (91%) also t‘eiborted their two—to-flve-Year-old child to be healthy. I"'Owever, two (9%) of the mothers reported frequent ear ihf'ectlons as a health problem for the sibling. 124 Table 6 Length of Home Apnea Monitoring -— Number and Percentage I Category Number Percentage (%) Length of Time On Monitor N=22 100.00 2 weeks - 1 month 1 4.50 1 month 1 day - 2 months 4 18.20 2 months 1 day - 4 months 6 27.30 4 months 1 day - 6 months 4 18.20 6 months 1 day or longer 7 31.8 TOTAL 22 100.00 125 Sibling Classes. The overwhelming majority of the nncpthers (N a 19, 86%) reported that the sibling did not 23 t:tend sibling classes to prepare for his/her new brother or :3 i ster. Only three mothers (14%) reported their two-to—five— year—old child had attended sibling classes. Extraneous Variables. in addition to the sociodemo- g raphic variables, a number of other variables were c:<>rwsidered as important for their relationship to the n1c>tzhers' response on the SDIT. These Include, in particular, Var- iables that measure the mother's reported stress level, tr’a ining, and group support. Mothers' Stress Level. The mothers were asked to rate 'tifieeir stress level during their home monitor experience on a SCale of 1 to 4, with 1 Indicating "high stress" and 4 | rudicatlng "no stress." In Table 7 the reported stress level <>f= the mother while caring for the home-monitored Infant is ‘3 |Spiayed. The average stress level is moderate (2.0) with E1?) SD of 1.0. The majority of mothers (N a 14, 70%) reported nn<>derate to high stress. (See Table 7.) Monitor Teaching Prggrams. The majority of the mothers (634%) reported that they had experienced a home monitor teachlng program while eight mothers (30.4%) stated they had Ilsa: attended such a program. Parent Group Membership and Attendance. Eight of the nnOthers (32%) reported belonging to a parent support grOUp. (DFHe mother (4.5%) stated she attended the group meetings 126 Table 7 Reported Stress Level of Mother — Number and Percentage ______———— Category Number Percentage (%) R epor ted Stress Level of Mother N . 22 100.00 High Stress 8 36.40 hfloderate Stress 6 27.30 Low Stress 6 27.30 r40 Stress 2 9.10 TOTAL 22 - 100.00 127 whenever meetings were scheduled. Six mothers (27%) attended the apnea support group meetings only occasionally. Profile of the Mother, the infant, and the Sibllrm From the sociodemographlc data obtained from the study ( see Appendix E), a profl le of the mother, infant, and s lbl lng can be developed. The mean age of the mother Is 27 years. The mothers were predominantly Caucasian (N = 22, 86%) with 86% (N = 19) married. The education level was var- led with (50%) of the mothers partial ly or totally completing four years of col lege. A moderate-to-high stress level was reported by 14 of the mothers (64%). The average family income was between $20,000 and $30,000 a year. Thirteen of the families (59%) had two children living In the home, the home-monitored infant and the two-to-five—year-oid Sibling. The mean age of the monitored infant was five months, and the mean birth weight was 7.3 pounds. The mean age when the Infant was placed on the home apnea monitor was between 11 and 20 days with the length of time on the monitor being between four and six months. The two most frequent r‘easons for home monitoring are observed apnea (N = 13, 89%) and abnormal sleep recording (N = 19, 86%). The majority of mothers (N a 14., 64%) report being part of a monitor teaching Drogram. The (two-to-flve-year-old) sibling Is generally reported to be healthy, and the majority (N . 19, 86%) have not attended sibling classes. 128 Reilabiiltyeof Sibling Developmental issues Tool (SDIT) The SDIT was constructed to measure the degree to which mothers perceive Changes in their siblings' behavior in relation to the apnea home monitor experience. However, when the SDIT subscaies were subjected to a reliability analysis, a number of problems became apparent. Most of these are attributable to the small sample size. Whenever a study sample is small, missing values on scale Items can cause severe problems with multivariate analysis of any kind. In this study, mothers were often unable to respond to a specific item because the behavior stated had not yet been rlglnai SDIT from 69 to 39 Items. The remaining 39 items were grouped into the subscaies (of the original Instrument, now consisting of fewer items. 1'he reliability analysis was performed on these seven ssubscales which led to the exclusion of an additional 13 l‘tems as they did not correlate well with the other items. (See Table 8.) As Table 8 shows, the alpha coefficients for the :SlJbscaies represent a moderate-to-high degree of Internal C3C>nsistency with the respective dimensions. 129 Table 8 Alpha Coefficients of the SDIT PSYChOSOC I a I Sibling interaction l Regression Aggression Anxiety (Jealousy) (Separ/ (N - 20) (N - 18) (N - 19) Strang) (N-13) # of items 3 w of items 3 w of items 3 w of items 4 .84 .80 .64 .79 (:ognitlve EExpioratory Memory/Language Fantasy/Imagination (N - 19) (N - 19) (N - 18) an of Items 4 w of items 6 # of items 3 .85 .79 .74 Bl - Number of cases with valid responses on all subscaie items 'H- of items - Number of items Included in each subscaie 130 Finally, following the computation of reliability scores, the remaining items in the subscaies were examined as to their theoretical relevance. It was important that the remaining Items were related to one another and to the subconcepts to be measured. One scale--the sibling Interaction scale which began as a broad concept--had to be narrowed in its meaning, as the remaining Items seemed to measure the concept of jealousy. A single reliability coefficient for the psychosocial and cognitive areas could not be computed due to the lack of a sufficient number of <:ases with valid responses on all items. The subscaies were retained on the basis of theoretical rationale; however, the :subscales could not be defended on the basis of their psychometric properties. The fOI lowing section WI Ii present the revised SDIT. Instrument (SDIT) Revisions The psychosocial sibling interaction scale now consists (of three questions Instead of the original 11 questions intended to measure this concept. This subscaie now appears tcaineasure jealousy behaviors rather than the broad concept C>f family Interaction as follows: 5. Want attention? 12. Behave in a manner that indicates jealousy of ltwfant? 14. Behave in a manner that Indicates jealousy of time and concern for infant? 131 The Legresslon subscaie, originally to be measured by eight Items on the SDIT, now consists of three questions following the reliability analysis. These three questions are: 2. Whine? 6. Want help with skills he/she can do? 9. Want to be held? The aggression subscaie also resulted in three questions reduced from the original 13 items: 13. Have temper tantrums or anger outbursts? 14. Act demanding or bossy? 18. Become verbally loud and aggressive when frustrated? The anxiety scale intended to measure both stranger and separation anxiety with 11 questions, and only four questions remained following the reliability analysis: 1. Demonstrate discomfort when you leave for short periods of time? 10. Have difficulty going to sleep at night? 15. Act restless or nervous with strangers? 21. Want light on while sleeping? The cognitive subscaie questions were also reduced In inumber as follows. Exploratory behavior questions were reduced from seven to four questions. These are: 7. Explore new places and objects? 8. Like to figure out simple problems for him/herself? 132 16. Seem Interested in and curious about his/her surroundings? 26. Have many questions when he/she experiences something unfamiliar? The memory/language subscaie was to six items as follows: 3. Use self-centered language? 4. Follow instructions given? 11. Use words to tell you about or events? 17. Talk to family members? 22. Retain and recall something 23. imitate adult behavior? reduced from 10 items past objects , act ions , newly learned? The fantasy/imagination scale items were reduced from eight to three questions. The questions listed below remain in the context of the (SDIT) instrument: 19. Tell imaginative stories? 20. Entertain him/herself? 25. Play make-believe? it appears obvious that the study instrument used to rheasure the maternal perception of specified sibling toehaviors requires further revision for future research. ‘These will be discussed In Chapter Six. in Table 9, the correlations between subscaies of the remaining 26 items of the SDIT are presented. (See Table 9.) As shown in Table 9, the psychosocial scales correlate as fOIIOWS: Table 9 PIBEJ'SKDTI F’rCDCHJCSt CHDf'rIBIZIt ICHWSB iBCBtVVEHeri Sth>s&:ail£:s: C>f tl1€2 FRGFVI‘SEBO SDIT 133 Psychosocial Intervention (Jealousy) Psychosocial Regression Psychosocial Aggression Psychosocial Separation/ Stranger Anxiety Cognitive Memory! Language Cognitive Fantasy! Imagination Cognitive Exploratory Psychosocial Sibling intervention (Jealousy) .57 .23 .67 .30 -.16 .39 Psychosocial Regression -.001 .38 .48 *-.45 .41 Psychosocial .Aggression .74 .11 .42 Psychosocial Separation/ Stranger Anxiety .35 -.002 .09 Cognitive Memory/ Language e .73 Cognitive Fantasy/ lmag l nat ion .82 e Cognitive EXploratory ‘ ‘signiflcant scores at .05 level 134 (1) The sibling interaction scale (jealousy) correlates inoderateiy with the regression scale (r = .57) and the anxiety scale (r = .67). (2) The regression scale does not correlate highly with any of Its remaining counterparts (l.e., aggression or anxiety). (3) The aggression scale correlates moderately (r a .74) with the anxiety scale eeiy. There are correlations between the psychosocial and cognitive scales as well: 1. The regression scale correlates moderately negatively with the memory/language scale (r - -.48) and fantasy/imagination scale (r - -.45), as well as positively with the exploratory scale (r - .41). 2. The aggression scale correlates moderately with the fantasy/imagination (r - .45) and negatively with the exploratory scales (r - .41). The correlations between the cognitive variables are cjlspiayed as follows: 1. The memory/language variable correlates moderately In a positive direction with the fantasy/imagination (r = .'78) and negatively with the exploratory variable (r - .73). 2. The cognitive fantasy/imagination subscaie <=c>rreiates negatively (r = .82) with the exploratory S~ubscale. Q (I) 1‘ r9 (1’ 135 In summary, the psychosocial regression scale shows a higher correlation with the cognitive subscaies than the psychosocial scale. The cognitive exploratory scales correlate with the psychosocial elements of the scale. However, high correlations do exist between the cognitive elements also. Analysis Pertinent to Study Questions in the following section, data that answers the major study questions will be presented. Each question will be addressed by the statistical procedures outlined in Chapter Four. For all correlations, the .05 level of significance will be used as well as comparison of means. in Table 10, an overview of the mothers' mean scores on the SDIT subscaies are presented (see Table 10). This table will be used to answer the research questions: i. According to maternal perception, how is the psychosocial development of the two-to-five—year-old sibling affected by the home-monitored infant in the areas of sibling Interaction (jealousy), regression, aggressive behaviors, and :stranger/separation anxiety? As can be noted In Table 10, the mean scores of all the E>sychosoclal subscaies are above the scale mean of 3.0 (which Indlcates no change), thus there seems to be a trend toward SQr‘eater anxiety, regression, aggression, and sibling interaction difficulties. ll. According to maternal perception, how is the CHognltive development of the two-to—five—Year-old sibling 136 Table 10 Mean Scores and Standard Deviations of SDIT (Sub) Scales Psychosocial Mean Score SD (Range 1-5 Pts) Sibling interaction 3.98 .61 (Jealousy) Regression 3.90 .75 Aggression 4.00 .61 Anxiety-- Separation Stranger 3.90 .61 e Cognitive E>t be known until further critical studies have been U) (7 In 149 performed (Merrit & Valdes-Dapena, 1984). if the "near miss" infant and the SIDS Infant are assumed to be two separate entities, It would seem probable that the sociodemographlcs of the populations could also be different. Age, ngght and Sex of infant. The mean age of the Infant was five months of age with a mean birth weight of seven pounds. The literature reviewed did not report an age or weight criterion for the "near miss“ infant. However, Beckwith (1975) found age distribution to be the most consistent feature of SIDS cases with the peak Incidence between two and four months of age and a rapid decline before six months of age. An increased risk of sudden Infant death was discovered among low birth weight infants, which Is consistently reported in the maJority Of SIDS studies (Beckwith, 1975). In studies by Black et al., (1978) and Kelly et al., (1978) the ratio of male Infant to female infant was equal. This infant population consisted of 13 males (59%) and nine females (41%). This finding is also similar to the three cited monitor studies. Age When Placed on Home Monitor. The mean age of the infant when placed on the apnea monitor was 11-20 days. Most (N - 20, 91%) of the infants had observed or recorded apnea spells from newborn to 40 days of age, as reported by the inother. It is difficult to interpret this finding because the researcher was attempting to obtain a sample of Infants ‘that were placed on the monitor later than the neonatal period so as to give the mother a point of comparison FOP was whi CU' thl m0 fc CE ar 150 regarding the newborn versus the monitored Infant. However, due to the difficulty obtaining an adequate sample size, the criteria were changed to include Infants placed on the monitor between birth and six months of age. This population was placed on the monitor before the peak incidence of SIDS, which Is an expected clinical practice. Time on Home Monitor and Reasons for Home Monitoring. The average length of time the Infant had been on the monitor was five-and-one-haif months. All of the 22 infants were currently being monitored; therefore, the total length of home monitoring is unknown. By using only mothers who are currently experiencing the infant on a home apnea monitor, the third characteristic of perception--being action oriented In the present (King, 1981)--ls addressed. it Is thought that these criteria will assist In making the data more relevant because the problems identified are current ones. In the study by Black et al., (1978) the average time of monitor Initiation was four weeks with an average duration of four months. The average length of monitor time in the Kelly et al., (1978) sample of 84 Infants was also seven months. Two reasons for monitoring were given in 64% of the cases. Observed apnea and/or bradycardla (N - 13, 59%) and/or an abnormal pneumogram (86%) were the most frequent reasons given. Only one mother reported prematurity (4.5%) In this population, although premature infants are at high r'isk for Sudden infant Death. Three (14%) mothers reported a Subsequent family history of SIDS as a reason for home 151 monitoring. Unfortunately, there is little literature that describes the population of Infants on apnea home monitoring. The reports from studies by Black et al., (1978); Kelly et al., (1978); and Goetz (1981) were consistent with the sample of this research study. The home monitor studies categorized the infants Into three groups: (1) those who had apnea or cyanosis at home or hospital including prematures; (2) those who had abnormal pneumograms Including prematures; and (3) those families who had a subsequent SIDS infant. The maJority of Infants fell in the first two categories as they did In this study. Other illness of infant. The maJority of mothers (N - 20, 91%) reported that their infants had no other Illnesses except the observed and/or recorded sleep apnea for which their children were being monitored. One aspect of SIDS and the "near miss“ infant Is the presumption of an apparently otherwise healthy baby. This finding ls consistent with all other studies (American Academy of Pediatrics, 1983; Beckwith, 1975; Guntheroth, 1982; Merrlth and Valdes—Dapena, 1984). Monitor Teaching_Program and Parent Group Attendance. The maJority (64%) of parents reported that they had completed a home monitor teaching program. ALL of the parents would have had to receive some type of education (Concerning monitor and CPR teaching. However, the question \~as worded using the word "program," which denoted a more forma EXDEI’ a par atter compa was I faml varl and stuc QVOL mall thr Slb Con YEa Far On' of 61 SI 152 formal approach than what some of the parents probably experienced. Only eight (32%) of the 22 mothers reported belonging to a parent group with only one parent reporting regular attendance. The sample was too small to perform the comparisons as planned. The lack of an adequate sample size was unexpected since the investigator had solicited two family support groups as data collection sites. This variable was to be correlated with mothers' reported stress and the sibling stress scores. Sample comparisons In other studies related to the monitor teaching program, and parent group attendance were not available for comparison. Sibling Sex, Age and Health. Ten females (46%) and 12 males (55%) comprised the sibling group. The mean age was three years. A near median cut was performed to divide the siblings Into two equal numbered groups. Age Group I consisted of 12 children ranging from two years to three years and six months. Age Group li consisted of 10 children ranging from three years and eight months to five years. Only three of the studies Included Childr'n below five years of age (Gayton et al., 1977; LaVigne & Ryan, 1979; Vance et al., 1980). The maJority of mothers (91%) reported the sibling to be healthy. The health of the sibling is important data to Include as It would be more difficult to Interpret behavior If the sibling were also chronically ill. Two of the mothers (9%) reported frequent ear Infections as a hea SID cla OI’ who .9.» ‘5 the ha» FBI the Sun mai to wa: en: be an Fe is re 153 health problem. The studies reviewed also reported the siblings to be In good health: Sibling Classes. The maJority of the mothers (N - 19, 86.3%) reported that the sibling did not attend any classes In preparation for the arrival of his/her new brother or sister. Correlations were computed between those siblings who had attended sibling classes and those who had not attended with no significant findings. it was theorized that the brothers/sisters who had attended sibling classes may have scores reported that Indicated less adverse Impact related to the infant/monitor. in the studies reviewed, there was no data available for comparison to this sample. Summary of Sociodemographic Data The profile of the mother In this study is Caucasian, married, and 27 years old. One-half of the mothers had two to four years of college. A moderate to high stress level was reported In relation to the infant home monitor experi- ence. The family income was $20-30,000. The mean age of the infant was five months. The Infant was placed on the monitor between 11-20 days for two maJor reasons: (1) Observed apnea and (2) an abnormal pneumogram. The maJority of mothers reported being part of a monitor program. The two-to-five- year-old slbiingwho had not attended sibling classes was reported to be healthy. _Lgterpretation of the MaJor Research Findings A discussion of the Interpretation of the maJor research Findings will occur in the next section. Since the sample 154 was limited In its size and convenience in nature, generalizations to a larger population cannot be made. Question 1. According to maternal perceptions, how is the psychosocial development of the sibling affected by the home-monitored Infant as measured by sibling Interaction, regressive behavior, aggressive behavior, and separation, both stranger and separation? The mean scores in the psychosocial areas had a range of 1-5 points with number 1 Indicating the behavior being “much less than before the infant/ monitor;" number 3 being "same as before Infant/ monitor;“ and number 5 indicating "much more than before infant/monitor." The highest mean score reported by the mothers was in the psychosocial areas (see Table 10). The subscaie depicting aggression had the highest mean score of 4.00 (N - 22) followed by the sibling Inter- action (Jealousy) score of 3.91 (N - 22) and the regression and anxiety scores of 3.90 each (N - 22). The reported increases In these behaviors as reported by mother are an expected finding as the sibling also responds to the Infant and the apnea home monitoring stressor. The experience of the monitored infant is reported by the mothers to be a stressful experience. The increased sibling scores probably are related to the maternal stress as well as the siblings' own stress. in other words, highly stressed mothers may be more likely to perceive impact of the monitored infant on their other child even though the Impact may not actually be present. 155 In one of the few studies that had included the younger sibling (three-to-flve years) In their sample (age three-to- 13 Years), LaVigne and Ryan (1979) found the total sibling group (N - 203) to be more withdrawn than the control group, which consisted of well children. On overall sibling behavioral disorders, the siblings age three-to-slx years had higher scores. The sibling groups also displayed more lrrltabliity behaviors. Siblings In the visible illness group had generally higher scores. No group differences were noted on measures of aggression. Vance et al., (1980) Included four- and five-year-olds in the study of siblings of children with nephrotic syndrome (ages four to nine years). Family, parent, and teacher Interviews were part of the data collection, as well as self- reports by the siblings. Siblings of children with nephrotlc syndrome were found to have a decrease In fighting, self-security, and confidence compared to the sibling of a well child (Vance et al., 1980). Gayton et al., (1977) studied the well siblings of 43 families who have a cystic fibrosis child. The age of the sibling ranged from five to 18 Years of age. The test results for these siblings showed no significant difference In psychological functioning between sibling with cystic fibrosis children and siblings with well children, Indicating that siblings of cystic fibrosis children did not demonstrate evidence of negative impact on psychological function (Gayton et al., 1977). 156 However, the difficulties In the comparison of these studies are many. Two of the studies (Vance et al., 1980; and Gayton et al., 1977) used standardized psychological testing of the well siblings. In LaVigne and Ryan's (1979) study, parent perceptions of the child's behavior through a standardized questionnaire was the method used for data collection. The youngest sibling age studied was three years of age. In addition, many of the study results were computed using a wide age range. For example, the LaVigne and Ryan (1979) sample ranged from three to 13 years; Vance et al., (1980) ranged from four to nine years; and Gayton et al., (1977) ranged from five to 18 years of age. LaVigne and Ryan (1979) found 22 group differences between the experimental and control group related to aggression. in this study, the aggression score for siblings was the highest reported score (4.00). Aggressive behavior may be indicative of the family stress communicated to the young sibling resulting In a feeling of loss of control and frustration. The visible group scores as reported by LaVigne and Ryan (1979) were also higher. interestingly, the apnea home monitor is a visible device which indicates that disease ls present. Vance et al., (1980) found a decrease In "sibling fighting” while this study found an Increase in aggressive behaviors. The sample Included a younger age group (two to five years), which may partially account for the differences in this finding as the younger sibling may naturally express anger and frustration as aggression. This 157 is due to less well developed Internal controls when compared to the older sibling. Also, the three remaining questions following the reliability studies which make up the aggression subscaie are as follows: 1. Have temper tantrum or anger outbursts? 2. Act demanding or bossy? 3. Become verbally loud or aggressive? These questions do not address the topic of sibling fighting. Additionally, there were only two children (59%) In a maJority of the sample families, the home—monitored Infant and the young sibling. There are too few studies reviewed to compare the multitude of behaviors which the studies attempted to measure. The LaVigne and Ryan study (1979) found higher scores on overall sibling behavioral scores in the three-to-flve-year age group as this study did In the two-to-flve-year age group. Also, the varied study designs and methods make comparison difficult. Question 2. According to maternal perception, how is the cognitive development of the two-to-flve-year-old sibling affected by the home-monitored infant In the areas of expiorative behaviors, memory/language, and fantasy/ imagination? The mean scores In the three subscaies associated with the cognitive domain Indicated generally no behavioral change. There was a slight decline in perception of exploring behaviors as reported by the mothers. The scoring 158 was the same as explained in the psychosocial scales (see Table 10). This finding lndrcated that there was little difference in the siblings' behavior in the area of cognitive exploratory, memory/language, fantasy/Imagination behaviors attributed to the Infant monitor as perceived by the mother. The SDIT questionnaire was not adequately designed to assess Intellectual changes as perceived by the mother. Several authors (Carandang et al., 1979; Vance et al., 1980) Indicated a decline in cognitive and school performance In the older school-age sibling of the chronically Ill child. Gayton et al., (1977) found no difference In intellectual status between the mean test scores of the cystic fibrosis children and the well siblings. LaVigne and Ryan (1979) found no evidence of learning problems In the well sibling sample. The SDIT Tool reported only exploratory behaviors, memory/language, and fantasy/Imagination as perceived by the mother. The Intellectual level of the child was not tested via a standardized test as in the studies by Carandang (1979), Vance et al., (1980), and Gayton et al. (1977). Question 1. is there a difference in the younger versus the older sibling in the degree of impact as perceived by the mother? The two sibling groups formed were to depict the younger sibling (Age Group l--two to three years, six months) and the older sibling (Age Group Ii--three years, eight months to five years). The mean scores of the younger age group were consistently higher In the psychosocial subscaies indicating 159 a greater impact on the younger sibling as reported by the mothers (see Table 11). However, only the regression scale showed a significant (p s <.03) difference. The mean scores of the cognitive subscaies for the younger sibling Is consistently lower, suggesting a greater impact on the younger versus the older siblings. LaVigne and Ryan (1979) also found higher scores in the younger sibling age grOUp. The younger sibling sample, however, was the three to six age range, which Is more akin to sibling Age Group ll (three years, eight months to five Years) discussed In this study. Family stress such as Illness/death, inappropriate parenting, or marital discord can Increase stress levels in children. Stress Is greater for children whose parents have difficulty In coping with crises Inside and outside the family (Honing, 1986). The ability to cope may be more effective among older children because they have an increased ability to think and cope. In addition, smaller children cannot move out into the community to seek supportive adults. The concepts selected for the SDIT Instrument were those that might denote the expression of stress in the two-to—flve- year-old child and scores were hypothesized to be higher in the younger child, which was substantiated by the study findings. Mothers' Stress Level Question 2. Does the reported stress level of the mother affect her perception of sibling impact? 160 The maJority of mothers (N a 14, 70%) in this study reported a moderate-to-high stress level with the average stress level reported to be moderate. The mothers who reported a moderate-to-hlgh stress level tended to report higher sibling scores on all the subscaies. Clearly a strong support system is needed for families who care for the home-monitored infant. It is obvious that the 22 sample mothers were in various stages of adaptation to home monitoring. in the usual course of action the family will attempt to adJust to the stressor with minimal change in the family's established pattern and structure (McCubbln & Patterson, 1983). When excessive demands are present and resources are depleted, the family begins to make changes in the existing structure in an effort to consolidate and bring the entire family Into a coherent, organized and functioning unit (McCubbln & Patterson, 1983). However, the process of bonadaptatIon/maladaptation fluctuates on a continuum as the family attempts to achieve a new balance in response to the stress event. This maJor finding will give the nurse direction in the development of strategies to address the reported maternal stress. There were the moderate correlations present between the mothers' stress and the sibling (Jealousy) interaction (r . -.57), separation/stranger anxiety (r - -.59), and cognitive/expiorative (r - -.52). The negative correlations are present because of the tool construction, which asked the mother to report her stress level as high = 1 and no! ITOWI rotl DEI af 161 no stress - 4. This resulted In negative correlations; however, results Indicate the higher the stress level of the mother the more impact she reports In the siblings (see Table 12). The explanation of this correlation most likely could be a part of the family response system, In that mother who is experiencing stress is most likely to perceive and report stress in other family members. In addition, the young sibling Is also sensing the mother's anxiety and is responding with his/her own stress behaviors. The lack of available data related to level of mother's stress and perceived sibling behavior limits the ability to make comparisons to other samples. - Question 3. Does the length of time on the monitor affect the sibling scores? The length of time the Infant is on the monitor has a moderate positive correlation with the cognitive fantasy/ imagination score (r - .53, p - <.01) and a negative correlation with the cognitive exploratory behaviors (r - .55, p - <.007). When the length of time on the monitor is increased, so is the fantasy/imagination score as reported by the mother. .It appears that the child is possibly spending more time alone, thus opping by the use of his/her Imagination. The exploratory behaviors of the sibling are decreased as the infant monitor time is Increased as reported by the mother. With the increased time of infant monitoring, this finding may Indicate that the child ls exercising 162 strategic withdrawal in order to assist in his/her adaptation to the changing environment. Again, there is an absence of published research with which to compare these findings. Question 4. Does attendance in a parent apnea support group affect the sibling scores? it was speculated that the mothers who were attending a parent support group would have reported lower stress scores for themselves and their two-to-flve-year-old child. Unfor- tunately, there was only one mother who regularly attended the parent support group, although seven mothers reported being a member. Statistics were not computed to answer this question due to lack of a sufficient sample. implications of the Research Findings to Nursigg Practice and Education The assessment phase of the nursing process requires data which will assist in the planning and implementation of health care delivered to the families experiencing a home- monltored infant. Sociodemographic data is important data to Incorporate Into this phase. The variables present In the Sociodemographic Questionnaire (see Appendix C) must be considered because they will influence the perception of the mother as well as assist in the identification of high-risk individuals (i.e., mother, Infant, sibling) who may require more creative and intense Interventions. From the litera- ture, these high-risk factors may Include: Cultural barriers, poverty, single parent, teenage mother, less than high school education, two or more children plus Infant, 163 previous SIDS death in family, lack of support systems, Increased stress behaviors, other Illness of infant, or chronic illness in family. in addition to the assessor role, the CNS begins the process of coordination through the Identification of health needs. it Is the CNS that demonstrates the expertise to coordinate the care delivered to this infant sibling and other family members by a team of health care professionals. An accurate profile of the client and family is essential to begin this health care Interaction. The need to aggregate data and promote individualization of assessments requires the CNS to communicate the importance of high quality nursing practice to the consumer, health team members, as well as the community as a whole. The numerous variables involved In the assessment of an individual and his/her environment are evident as the provider begins the complex step of patient and family assessment. Enthusiasm for the clinical nurse specialist role with demonstrated expertise will promote and enrich interventions that result in positive outcomes for the child rearing family. Through the use of role-modeling, the CNS will demon- strate to the mothers how to include and communicate with the sibling. This Intervention can be accomplished during the time scheduled with the infant and family in the primary care setting. The CNS will address the sibling directly and include him/her in the health care discussions, eliciting verballzatlon and interpreting both verbal and nonverbal 164 cues. This intervention will hopefully assist the parent to also include the sibling during family discussions and transitions. Finally, the CNS will use the role of educator to Impart Information concerning the impact of chronic Illness on the family system. The emphasis on the family must begin In both the practice and educational systems. The professional nurse must be educated to incorporate family theory as a framework for assessment. M. Rogers' (1981) nursing theory with the Modified Family Stress Model by McCubbin and Patterson (1983) was used to develop the theoretical framework for this study, as explained in Chapter Two. Nursing science builds its foundation on Rogers' five basic assumptions concerning the complexity of the Individual and the environment. The philosophical and creative opportunities that Rogers (1981) creates for the nursing profession In her theory encourages the advanced practice role of the CNS. A nursing curriculum must be developed whose graduates will Improve the health care of the population. Completion of a BSN program will hopefully become the entry practice level for the professional nurse. Undergraduate nursing education will lay a foundation of essential concepts such as primary care, growth and development of the individual and family, stress theory, loss and grief theory, as well as the effect of chronic illness on family systems. It is also 165 important that the lack of research literature related to effect of chronic illness on the sibling be addressed. At the graduate level of nursing education, ln-depth skills related to clinical practice are learned, such as assessment, communication, counseling, case management, and group dynamic skills. The master's degree level practitioner will also Integrate the important components of primary care into advanced practice, those being: Accessible, accountable, affordable, continuous, comprehensive, and coordinated. The Clinical Nurse Specialist will have a sense of obligation to the profession to perform clinical research on an ongoing basis. Sibling response to chronic Illness in the family will be one of the identified areas for such research. Although only a small portion of this model was tested (l.e., mother's perception) the study data can be applied to the framework to develop pertinent nursing Interventions related to the mother and young sibling. These Interventions are primarily designed for the Family Clinical Nurse Specialist in advanced practice. As discussed In the study results, the mothers perceived the two-to—flveeyear-old sibling behavior to be Impacted slightly more in the psychosocial areas of aggression, sibling (Jealousy) Interaction, regression and anxiety than before the infant/monitor experience. These results indicate the need for the nurse to give anticipatory guidance to the mother and young brother or sister in addressing the health 166 care needs of these individuals In both the acute and primary care settings. The outcomes will hopefully result in normal development for both the individual and family. The conceptual framework for this study explained in Chapter Two (see Figures 3 and 4) is completed with interaction of the professional nurse (see Figure 5).. Teaching and counseling to promote health maintenance activities In a variety of settings Is an Important role for the nurse In advanced practice. In this model the time lines of nursing interventions are depicted by three levels. At Level l, nursing strategies will address the anticipatory guidance required to decrease maternal and sibling stress at the time of initial family preparation and education for home care. The sibling will be incorporated Into the plan of care at this time. The timeliness of nursing actions may decrease family stress and prevent sibling dysfunction with the use of specific strategies explained later In this chapter. At Level ii of the model the family will be at home with the monitor and may require nursing intervention with the mother and child during the Initial and adjustment phases as described by Barr (1979). Reported sibling maladaptation (Level ill) will require more Intense planning and implemen- tation to relieve stress behaviors as well as assistance In the development of positive adaptive behaviors for sibling needs that were not addressed at the time of entry. The role 167 Conceptual Model Figure 5. a l.-l.- ii i ..I 8333.5 838235 ill IIIIIIJ \“\\ \\\ HHH E..— T All 88.3. :i. acne-u ........ 2:33 3. g ”ugh H «HE/ma A / ..................................... \ 168 of the CNS as a change agent-~uslng a deliberate approach to address maternal and sibling needs while preparing the family for Its care giving responsibilities, setting time frames and goals for preventive health care--ls an Important aspect of the advanced practice role. Evaluation of the environment and its effect upon the sibling and family, the family history and growth and developmental processes are part of this process. Nursing diagnosis and intervention is based upon a holistic view and does not emphasize parts as articulated in Rogers' nursing theory (1981). intervention ls aimed at working with the environment and with modifying life processes. in all Instances, coordination of the individual activities with the environment is paramount so that adaptation can occur. Addressing parent and sibling coping will assist in the development of positive mental health. Outcomes must be measured to determine the strategy revisions necessary. The role of educator Is paramount in educating the mothers to manage their stress during this difficult period and to know the signs of stress in their two-to-flve-year-oid child. The CNS in the planner, educator, and counselor role can address healthy siblings‘ needs and offer parents useful strategies to help their two-to-five-year-old child to adapt to the altered family situation (Trahd, 1986). This may include a variety of nursing strategies that can be identified from the data and supporting literature. 169 1. Strategies to Decrease Maternal Stress Assisting the family to cope with the home-monitored infant experience Is one of the goals of the teaching program. The strategies will assist the parent(s) to: (a) realize that they have the internal resources to accurately Identify problems and to seek creative solutions to them; (b) Identify and use the external support system such as extended family, friends, apnea support group; (c) Identify and use internal support systems such as the development of positive self—regard attitudes (Brammer and Abrego, 1981); (d) develop skills to reduce the accompanying stress such as self-relaxation, means to control over/under stimulation and self-rewards; and (e) develop skills for planning and achieving change such as listing options, weighing pros and cons, and making provisions for change (Brammer and Abrego, 1981). 2. Strategies to Reduce Sibling Stress Assisting parents to: (a) communicate openly with the young child and offer time for questions and feeling expression; (b) give small amount of new Information at a time; (c) keep some form of consistent household routine; (d) prepare the child for changes In family before they occur, whenever possible; (e) enhance child's self-esteem through encouragement, caring, focused attention and respect; (f) encourage the child to develop a special Interest or talent; (9) use anticipatory guidance to avoid stress from sudden transition; (h) allow anger expression toward the 170 Infant, find individual talk time, and encourage verballza- tlon of feelings; (i) spend high quality time with young child; (J) attempt to maintain the same caregiver for child (i.e., extended family or child sitter); (k) acknowledge strengths and ability of sibling; (i) help child distinguish reality from fantasy; and (m) help child view the situation positively. Other nursing interventions may also include: (a) scheduling 1:1 time with the sibling; (b) role modeling of interaction with siblings to family; (c) assisting parents to Interpret sibling behaviors, questions/concerns; (d) assessing siblings periodically to determine their adaptation to infant home monitoring; and (e) reminding parents of Importance of adequate rest, nutrition, and medical care for the sibling during this busy time in family life. In summary, each child must be assessed and Individualized strategies planned in order to manage the multitude of behaviors that could be manifested during this stressful period. Current nursing staff practicing in the home monitoring programs will require continuing education in not only the technical areas of care but sibling development and family needs as well. Many of the generic nursing programs are geared toward acute care nursing practice, rather than nursing In wellness, which assumes health prevention, promotion, and maintenance. Intervention focused on 171 prevention of sibling dysfunction will assist the family in Its adaptation to home apnea monitoring. The importance of a knowledge base that Incorporates Rogers' (1981) concepts of wholeness, openness, change, and adaptation will promote positive outcomes for the individual and family. The offering of theory via seminars and inservlces that focuses on chronic illness, home care, family and individual assessment, adaptation and growth and develop- ment of the family members Is essential in the development of advanced graduate education programs and advanced nursing practice. Finally, nurses must be encouraged to explore and understand their own perceptions. In this way, they will truly view the client/family's world and address needs through this therapeutic interaction. Implications of the Research Findings to Nursing Research Instrument Alteration. Several modifications are necessary on the sociodemographlc questionnaire used in this study. The changes are due to the difficulties discovered in the interpretation of the subJect responses. On the socio— demographlc survey (see Appendix C), the following questions require greater clarity in either the question or the response menu: Question #1. Remove current date from body of Guest ionna l re . 172 Question #3. The response menu should be altered so that the ethnic backgrounds cover the most common cultures in the geographic area (i.e., delete «3 lndlan). Question #4. The response menu should be altered so that the marital status is mutually exclusive (l.e., eliminate *2—Slngle). Question #8. "Homemaker" should be added to the response menu. Question «19. The stem of the question should ask the length of time the Infant was on the monitor with a fill-In-the-blank response. Question #23. The response menu should renumber the stress level (l.e., high stress - 4, low stress - 1). In this manner, the correlation would be In a positive direction. The original SDIT developed for the study was revised through the process explained in Chapter Five. Because of the high number of not applicable responses, only those questions with three or fewer missing variables were subJected to the reliability testing. Thirteen more items were omitted from the SDIT via computation of the alpha scores. The omission of these questions narrowed one of the concepts. The broad concept of sibling interaction was narrowed to measure Jealousy. A discussion of the concepts and questions appears In Chapter Five. in summary, the instrument that remains is smaller in size and more efficient to administer due to the decreased 173 time needed for completion (see Appendix D). The instrument will require further use with a larger sample of parents. Sample. The small sample number created difficulty in correlating the demographic data with the SDIT. Due to the small numbers, correlations planned could not be completed. Finally, through the identification of an accurate client profile and potential risk factors, the nurse can create appropriate research designs. The study sample was difficult to obtain due to the study criteria. The need to obtain a sample of Infants that were placed on the monitor between two weeks and six months of age decreased the sample number. After seeking data for a three-month period, the criteria was changed to include all infants placed on home monitors between newborn and six months of age (see Appendix B). Perhaps using a control group of newborns with two-to-flve- year-old siblings would have allowed the researcher more control of the newborn variable. In retrospect, an interviewer-administered design may have increased the sample size and assisted the researcher to obtain a more heterogenous sample because the mothers who could not read well could be interviewed to obtain their perceptions of sibling behavior. Furthermore, the timing of this study found southwestern Michigan going through several maJor transitions which directly impacted the sample procurement: 174 1. The new SIDS Research Center opened in December of 1986 with the center absorbing the large parent apnea support group. 2. Several monitor companies were also experiencing change. While some companies were gearing up for a large influx of patients (i.e., the monitor company affiliated with the SIDS Research Center), others were preparing for a decrease in Infant home monitoring census. Staff from these companies were frequently relocating. This created a most unstable environment in which to collect data. 3. The supervisors that were managing the five monitor companies were usually respiratory therapists. it was at times difficult to seek cooperation In data collection as reorganization of the companies was naturally their priority. Design. The optimal research design for studying the effect of home monitoring on two-to-flve-year siblings as perceived by the mother would be an experimental design. Maternal per- ceptlons of siblings with an infant (control group) would be compared to siblings with an infant at home on a monitor (experimental group). in this way the researcher could control the newborn variable. A longitudinal observational design would also yield more accurate results as adaptation to home monitoring is a process as described by Barr (1979) which occurs in three stages: Initial, adJustment, and the time thereafter stage. instrument administration could occur during these three stages and comparisons made. 175 Longitudinal studies would assist In the development of sound interventions to assist the mother and sibling In their adJustment to the crises of home monitoring. In summary, the SDIT could be administered at different times in the monitoring period to compare maternal perceptions over time. Research should also be conducted with fathers and older siblings to obtain Information of their perceptions In order to address the needs of the entire family and to look at the Interaction of these perceptions. The tool constructed by this researcher also requires changes in the scoring options to create more variability In the scoring mechanism. in summary, further nursing research should be focused on continued assessment and description In order to gain understanding of the Impact of the home-monitored Infant on the family system. Through consultation, collaboration, role modeling, and education, the nurse in advanced practice will be influential In caring for the family preparing to assume responsibility for their home-monitored infant. Nursing research will provide the CNS with the knowledge base to fulfill this role. Recommendations for Future Research Implications for further nursing research may be concluded from this study as follows: 1. Conduct a similar study that is recommended ggiy after revisions are made in the sociodemographlc and Sibling Development Issues Tool as outlined earlier In this chapter. 176 2. incorporate more monitor companies and parent support groups to obtain a larger sample is important. 3. Use a home interview format in order to obtain a more heterogenous sample. in this manner the sample may include those Individuals who have difficulties with written questionnaires. 4. Use a control group consisting of well Infant and two-to—five-year—old sibling. 5. Obtain maternal perceptions of a different chronic childhood disease such as cystic fibrosis. Further research using the SDIT or other chronic disease would provide comparison of maternal perception of sibling reaction. It could be that chronic illness is different from the temporary nature of apnea monitoring. Expanded Research 1. The SDIT could be divided to accommodate more questions which relate to a limited age group. For example, Section One that relates to the two-to-three-year—old and Section Two has questions pertinent to four-to-flve-year old development. The defined focus would allow the researcher more exploration related to the specified age group. in the SDIT, there were many missing variables as the tool (SDIT) attempted to cover a wide age range (two to five years), thus some questions were not applicable for a specific age and required the mother to respond as "does not apply." 2. Some of the moderating variables require further research such as length Of time on monitor, mother's stress 177 level, and the impact of a support group. These components will also give further direction for nursing actions. 3. The perceptions of father as well as older siblings will also give direction to a family-centered approach to nursing practice. 4. Research which compares all age siblings' reaction to the home-monitored infant as perceived by mother and father would provide Interesting information. 5. Comparison of maternal and paternal perceptions would also assist the nurse in the family plan of care. 6. An observational and/or report tool to directly measure sibling behavior would obtain results of actual sibling feelings and behaviors. Experimental Research Following the completion of the descriptive studies, research related to the effectiveness of various nursing Interventions ls essential to the continuation and further development of scientific nursing practice. For example, various interventions to decrease maternal stress could be tested as well as specific approaches to promote sibling coping. For the most part, research directed toward the improvement of sibling coping is not well documented. Conclusion The need for continued research in the area of sibling reaction to chronic illness cannot be overly emphasized. investigators must not only focus on the difficult methodo- logical issues that arise but also conduct experimental 178 research that evaluates various interventions to assist clients to cope with the stress of chronic illness. indeed, there were several methodological weaknesses present within this study. First was the inability to use a random sample technique, which limits the ability to generalize the findings outside of the actual study sample. Furthermore, the small sample size made it difficult to analyze the data in relation to the sociodemographlc vari- ables and the Sibling Developmental issues Tool. Although there was a rather large pool of subJects for study, It was most difficult to obtain an adequate size sample as explained earlier in this chapter. An interview-administered tool versus the self-administered tool might have enlarged the sample size in a more timely manner. The six—month period of time resulted In a sample number of 22. The Interview-administered approach may have given the researcher more control over obtaining an adequate sample number. Finally, future researchers must be encouraged to accept the challenge of conducting studies with families and siblings of chronically Ill children. The use of longi- tudinal studies may capture more accurately the adaptation/ maladaptation of the well sibling in relation to the chronically ill child, rather than episodic data collection. Unfortunately, there are difficulties involved In conducting longitudinal studies. Such studies are time consuming and expensive as well as burdened by attrition. ‘l—_______ 179 The nurse in advanced practice ls being challenged to focus on prevention and wellness. Health care resources, including expertise and dollars, need to focus on identifi— cation of the high-risk individual and family. Effective actions proven to maintain wellness and promote individual and family growth require a priority position in the health care system. The nursing management of the child—rearing family with a home apnea monitored Infant ls both complex and rewarding to the professional nurse. It is important that the family unit is considered when the plan of care is developed. M. Rogers' (1981) nursing theory provides the goal of creative change and growth to meet maximum health potential. The individual and family as an open dynamic system set the stage for the Family Clinical Nurse Specialist to maintain and promote health. Appendices Appendix A Verification of Research Approval 180 181 MICHIGAN STATE UNIVERSITY W com ON M mm m LANSING 0 IOU“! 0 due-lea m sumo: moon no 49mm 3mm um ”Hue June 17, 1986 no: , limit can: by I mm: max 2. 22:13:13., mm, ucamsW SUBJECT: PROPOSAL ENTITLED. "HAIEZXAL PERCZ?TIORS OE’SIBLZSG (AGE 2-5 YEA35). REACTIOR TO A 8033 EQUITORED IRFAXT“ The above referenced proposal has been distributed for review to s subcomdttee at 00.135 and one of. the revievers node the following consents: Reviewer - ”'mo changes need to be cede: 1. Delete the reterence to UCRIHS'eppt-ovel 1n consent tors. 2. Address the $41.4; procedure in the consent torn." We would appreciate your early response to these cements so that we can conplete our review of this project. Jns cc: Dr. Barbara Given NSUi -Affi-e-o- demise-i W m“ I82 MICHIGAN STATE UNIVERSITY mammonmmm mmncam mmmnonmm um ”Hue July 8. 1956 our LANSING - £0qu - «noted. 3;. Diane Uhite 1122 Bronson Circle Kalamazoo. Michigan A9008 Dear Hs. White: . Subject: roposal Entitled. ”Eaternal Perceptions of Sibling (Ate 2-5 Years) Reaction to a Rose Monitored Infant" UCRIES' review of the above referenced project has now been completed. I an pleased to advise that the rights and welfare of the bu=an subjects appear to be adequately protected and the Committee, therefore. approved this project at its nesting on July I. 1986. You are reninded that UCRIHS approval is valid for one calendar year. If you plan to continue this project beyond one year. please oaks provisions for obtaining appropriate UCRIHS approval prior to July 7. 1987. Any changes in procedures involving human subjects oust be reviewed by the UCEIHS.prior to initiation of the change. UCRIES must also be notified pronptly of any problens (unexpected side effects, conplaints. etc.) involving human subjects during the course of the work. Thank you for bringing this project to our attention. I: we can be of any future help. please do not hesitate to let us know. Sincerely. (75-Mu. Henry E. Bredecx Chair. . UCRIHS HES/jun ct: Dr. Barbara Given HSU :- - 47M Alt—atone; Opp-emote Ilene-see- 1(33 BRONSON METHODIST HOSPITAL *. 152 as? LCVELL WOO. MICHIGAN 49007 616083-76“ May :3, 1987 to Uhon it Hey Concetta this letter is to contia the approval of lug-sing Research Proposal “61 Paternal Perc tions of 8131' (a tvo to ant by the Bronson -ve) Reaction to a acts-Honitored Lt! [capital Nursing leaner-ch Comttae. thestudyusrevievedatthedanuaryw. 1981mm til-investigator, DianeMte, ”notified thatshenisht prooeediniaplenentiogthepropoealanytineartarthst date. lhry Johnson-bouncy. I... flair. Inning lesser-oh Co-ittee Appendlx 8 Letter of Introduction and Consent Forms 184 185 Dear Parent, As a Michigan State University graduate nursing student, I have chosen to tomolete my master's thesis by conducting a research study on the deveIOpmental issues present for the Young brother or siSter (age 2—5 years) of monitored infants as perceived by mothers. This letter is written to request your participation in this study. Mothers will each be requested to complete two questionnaires mailed to their homes. One questionnaire contains general information about your family, the infant, and the brother or sister. The second questionnaire contains 69 questions about your Z-S-year-old child. All responses will remain confidential. Mothers are invited to participate in this study if the following criteria are met: 1. The mother lives in the home with the monitored infant. 2. The monitored infant is no older than 12 months of age. 3. This infant is the first child in the family to ever be on a monitor. 4. A sibling between the age of 2-5 years lives in the home with the infant on a monitor. 5. The mother is able to spend 30-40 minutes to complete the questionnaires. If you meet the above criteria, I would appreciate your participation in the study. The decision you make will not affect your health care. If you choose to participate, you may withdraw at any time without penalty. Please return the postcard which, when mailed, will indicate your willingness to take part in the study. Further information, including a consent fonh as well as the questionnaires, will be mailed to you promptly after receipt of permission to do so. I will also telephone you to see if you have any questions. If you have any questions, please contact me at work (1-615-383-1396) or at home (1-616-344-7776). Sincerely, Diane Hhite, R.N. Clinical Nurse Specialist Candidate Michigan State University 186 Dear Parent, Thank you so very much for agreeing to be a part of this research study! Your assistance will help nurses and other health professionals in the development of improved programs for infant ,home monitoring programs. Enclosed in this packet you will find two consent forms and two questionnaires. One consent form is for you to retain for your records, and one requires your signature and its return with the questionnaires. The first questionnaire contains general information about yourself and your family. The second questionnaire focuses on your child age 2-5 years and his/her reaction to the monitor experience. If you have more than one child in the 295-year age range, select only 225.child in this age group to keep in mind while filling out the survey. Please answer each question as honestly as you can without seeking assistance from spouse, family or friend. Remember that you will not be identified in the study. ' ' I very much appreciate the time and effort you have expended to take part in this research. I will telephone you several days after the mailing of this packet to answer any questions you may have. Feel free to contact me with any questions you may have (383-1396/ work or 344-7776/home). Thank you. Diane Hhite, R.N. Clinical Nurse Specialist Candidate Michigan State University 187 Script for Obtaining Informed Consent Some Studies have been conducted that are related to parents' adjustment to an infant on a home apnea monitor. Presently there are no Studies available that determine the effect of the monitor on other young children in the family. Nurses are concerned because it is important for the home monitor programs to address the needs of the entire family, including the tweeto-five-year-old child. The studies related to parents of home-monitored infants show that this is indeed a stressful period for families. I am conducring a Study to find out what developmental issues are present for siblings (age two-to-five years) with a monitored infant in the home. I would appreciate 30 to 40 minutes of your time to complete a queStionnaire, which includes a general information section plus the Sibling Developmental Issues Tool. If you participate in this study: 1) All information regarding your responses will ' be treated confidentially by the use of code numbers. Names will not appear on any of the questionnaires. The questionnaires will be destroyed after the study is completed. 2) You have the right to withdraw from the Study at any time. . 3) Participation or nonparticipation in this study will in no way affect the health care your family is receiving. 4) The investigator may release this study to nursing literature: however, you will not be identified by name. 5) You may requeSt a summary of this Study if you so desire. If you have any queStions at any time regarding this Study, you may ccntac: Diane White at work (616-383-5910) or home (616-344-7776). 188 Informed Consent Diane White, R.N.. is conducting a study to measure the loose: of the home-monitored infant on the child's (age two-to-five years) development as perceived by the mother. While studies are present that describe the needs of parents during the monitor period. here are no Studies available that address the brother/sister issues. If I voluntarily consent to participate in the study. I understand that: l) 2) 4) 5) there will be a general information and the Sibling Developmental Issues questionnaires to complete. This study will not affect the health care my family receives. now or in the future. All information regarding my participation will be kept confidential by the use of code numbers. flames will not appear on any of the questionnaires. the questionnaires will be destroyed after the study is completed. I can withdraw from the study at any time without any affect on the health care my family receives. I my obtain a emery of this study if I so desire. I acknowledge that: 1) 2) S) I have been given an opportunity to ask questions about this study and they have been answered. If I have further questions. I may contact Diane white. 3.3.. at (616) 383-5910 and (616) 344-7776. Participation'in this study will in no way affect the present or future health care my family receives. the investigator has my permission to release the information gained from this study to nurs:og literature. I understand that I will not be identified and data will be presented in aggregate torm.only. I have received a copy of this consent form. Cate Mother Appendlx C Sociodemographlc Questionnalre 189 190 Cuestlonnalre ei Socio-Oemograonlc The following questions include general information acout yoursel'. your monitored invent. your 2-5 year old child. and your (amiiy. Piease answer all the duestlons as best you can. There are no rlgnt or wronfi 8“3*¢'3- Aliginlormation will be confidential! 1. Date 2. Age 3. ttnnlc background: (Please mart an (X) In acorcorlate category) Afro-American (Black) - Mexican American Caucasian (White) Oriental lndlan Other 4. Marital Status: (Please mark an (X) in appropriate category) __ Married _ Divorced _ Single _ widowed ___ Secarated 5. Your educational level: (Please mark an (X) in nlgnest grace completed) ___ Fewer than seven years or school (grades 1-6) Junior High Scnooi (grades 7.!) Partial ngn Scnool (graces io-ii) Hign Sonool (ccmoleted 12th grade) Partial College Education (2 years or less) ___,College Education (4 years) Beyond 4 years of college ‘ 191 6. Are you presently working for pay outride the hcme? Yes No 7. if yes. are you working: . Pull-time Part-?zme s. .wnat is your current occupation? (Mark an (X) in one category) ___,Clerlcai ___ Seni-Skilled or Unskliled worker [___ Professional ___’Currently Unemployed ___ Executive ___,Other (Please specify) Skilled Worker ' 9. Soouse or significant other in home? ___Xes ___No )0. it yes. accuse or signiilcant other's educational level: (Please marx an (X) in highest grade completed) ___ Fewer than seven years of school (grades 1-6) Junior High School (grades 7-9) Partial High School (grades lO-ii) High School (completed 12th grade) Partial College Education (2 years or less) College Education (4 years) ___ Beyond 4 years of College ii. I! yes. scouse or signlilcant other‘s current accusation: (Mark an (X) in one category) lerical Semi-Skilled or Unskilled worker Professional Currently Unemoloyed Executive Other (Please Sbeclly) Skilled Worker 192 )2. What is yoor family's total annual income? 0-9.9!9 30.000-29.999 20.000-29.999 50.COO-55.§99 )3. How many children do you have living at home? 14. What are the ages and number of the children living in the home? [Place the number of children In appropriate age columnisll Newcorn to 1 year ’ 9 years i pay to 12 Years 1 year 1 day to 3 years 12 years 1 day to is years 3 years 1 day to 6 years 15 years 1 day to 18 years B years i day to 9 years The following duestions describe general information about your infant and the apnea monitor. Please answer all duestions to the best of your ability. There are no right or wrong answers. All information will be kept confldentlail 1:. Birth date of monitored infant: iB. Birth weight of infant: )7. Sex of infant: Male Female 1:. when was your child placed on home monitoring? O - )0 days At - :0 days )1 - to days Bi - BO days 21 - BO days Bi - 70 days 3) - 40 days 7) - BO days 193 accroxlmateiy how long has your infant teen on the monitor? O-B days 2 months i day to 4 months .__ ‘ "'“ ‘0 3 "03*: ‘___,4 months 1 day to 3 months 2 weeks 1 day to 1 month B months 1 day or longer ___fi month i say to 2 months why was your infant placed on I monitor? (Check 3;; that apply) [____Otserved apnea spell end/or bradycardla (low pulse) spell ___ Abnormal pneumogram ___ Premature infant Previous sudden infant death In family Other (Please Specify) Does your infant have any other illness or congenital prooiems? Yes NO if yes. what is the illness or congenital problem? HOW ”Oi-HG YOU fit. YOU? SthII lCVCl IISOCQIKIB WIS}! :3. Mflfllt=f experience? (Mark an (X) in one category) High Stress ' Low Stress Moderate Stress No Stress were you involved in a monitor teaching program? ___Yea ___33 0° YOU Belong to a parent group of monitored infants? ___yes ___flo if yes. how often does the parent group meet? __ Once a month _ 2-3 times a year __ Twice a month _ Never Cnce every other month 194 27. if yes. how often do you attend the parent group? whenever it meets C oosionaily Never The following duestions include general information about your child (age 2-5 years). if you have more than one child in this age category. select ongy one to keep in mind while answering these duestions. Please answer all the duestions to the best of your ability. All information will be kept connlcentiaii 2B. Birth date of child: 29. Sex of 2-5 year old child: ' Male Female SO. Does your child age 2-5 years have any maJor health problems? Yes No 31. if yes. what is the major health problem? (Mark an (X) in approoriate category) ___’AsthmaICystlo Fibrosis ___ Kidney Disease __ Freduent Ear infections _ Cancer __ Seizures _ Heart Disease ___ Mental Retardation ___’Other (Please Specify) Neuromuscular Disorder 32. Old your child (age 2-5 years) attend any sibling c:asses in preparation for the newborn Infant? Yes No 33. if you have more than one child in the 2-5 year old age range. please Stat! 2113 VISSOOS YOU selected this particular Cflllc: Thank you for your time! Please place the completed ouestlonnalres In the addressed envelope and return to the researcher. Appendix D Sibling Developmental Issues Tool (SDIT) [69 items] and REVISCG Sibling Developmental ISSUCS TOOI [26 items] 195 196 sun-mu.“ beeewet menus-sunny APPLY than heathen Int-SI 188ml mt. mm ‘- iii: Does 2- d? i. Demonstrate discomfort when you leave for short periods of time? ‘3 2." whine: 3. Use self-centered language (i.e., 'I' and 'me')? -g——— ————— -—-_e-.- bm..—.. ___—..— .. .- 4. Follow instructions I given? 4. _—-——.—- D‘"" —-—_—’ —‘- ‘ -_ - - 5. want attention? 6. want help with skills he/she can do? 7. Explore new places end/or objects (i.e., look at and touch)? 5. Like to figure out simple problems for him/herself (i.e. , trial-end-error)? 9. went to be held? ( 10. Have difficulty going to sleep at night ' 11. Use words to tell you about obgects. actions or events in the past? i2. Behave in a manner that indicates jealousy of infant? i3. Have temper tantrums or anger outbursts? 14. Act demanding or bossy? Magma—tel WW 15 ‘9." ll 20 24 25 26 27 Cease talking when upset? nae self-oestesed language (i.e., 'I" and ”3“)? Pollen instructions given? Beam easily upset or frustrated? want attention? Actrestlesadr nervonswith nonparamtreletivps? Hentbelpwitbshills he/snecandp? -_ hotrestlessornervous vital-disaf-uy? ‘l'i'ytostriheoutat infantphysioally? Ietunetosharetoys end/osbelongings? Explore new places and/or objects (i.e., look at and touch)? see-m Aral-y Slight." undue Infant! I-BEI' 198 Salli-mun.“ 33 34 35 36 37 38 39 40 ‘1 mock”? nerds-en? Use fantasy to esplain cause/effect of illness? Speak rapidly and/or stutter? nave various caplaints (i.e., headache. stmaohache)? Refrain fra fully actiVities? nave difficul going to sleep at night? nave tear of mines objects? Bave difficulty with concentration and attention? iisewordstotellyou aboutobjeots.ections oreventslnthepast? Stayawayfrainfant? Slash toys or other objects? DC.” WV -- 31803th use 282“" mm 8.“ it ‘2 £3 45 46 47 48 49 50 51. 52 53 54 55 Actd-endingorbossy? much“? Deepesturesto micatswantsand needsratbertnanwords? rrytostriheoutat verball lefuse to join in family activitieswheninuited todo mp? Crawl in bed with you at night? Imitate sue past event (Le.ee ‘ ”‘7’? save imaginary playmate? ‘l'a-lh to fully m-bers? " Elli: 200 59 60 63. 62 63 64 65 67 5| ‘hanityouforyourtime. not overly active? trytostriiasoucat othersiblinssmnfl ‘l'ell imaginative stories? Entertain him/herself? teams or annoy infant? want light on while W utainaflreoall sasthingmlylearned? mute ml: behavior Daeoafortbebaviors suchastin-beuchingor rocking? behave in a manner that indicates jealousy of your time with and concernfor infant? indicates he/she has caused illness or fmaily stress? Play Ins-believe? lave may questions when be/ene “sciences stoning ? ~ {Elf nvelope and return to researcher. Please place oapleted quutionnaire in addressed 201 OUISTIONNAIEE 02 SIILINI DEVELOPMENTAL ISSUES TOOL (ROVlsed) Directlone: A numoer of statements union may eonly to your Z-S-year oua cntlo‘s oeheVIor during the baby‘s home MOHICOP oeraod are given oeiow. R080 SIC" SSSCIMOflt 800 then lek an (X) In 2H. 00! E0 tn. Fight 0' t". statement that oegt oeecrioea your 2-5-yeer-oaa Child's oenavuor. If you have not ooserveo the hehavcor mentioneo in the statement. mark an (X) In the ”coat not eooly‘ cotumn. I? you have more than one Child In the z-s-year-olo range. CHOOS. only one Ch'ld t0 KOCO In mind flflllfl SHCWCFIflq Ch. QUCStIOflS which fotlow. There are no right or wrong answers. Remember. gtve the answer which ;¥OU FQCI GCSCF'DIS YOU? CHIOO'S DCHIVOOV. I Cont:nucc 202 :flunillllleun-leeelIlse-Iteel DOCS I.) ;‘~) our -5 r child? Demonstrate discomfort when you Ieeve for short oerioas of time? Whine? Use self-centered iandusoe (i.e.. ‘i‘ and elm.- )7 Follow instructions given? Want attention? want help with SKIIIS he/3he can do? Explore new pieces and/or ODJCCtS (i.0.. IOOK It and touch)? Like to rigure out simoie prooiems for him/herself (i.e., trial-ano-error)? wont to he heio? Have difficulty going to sieeo at night use words to tell aoout Objects. or events YOU ICtiOflS in th. DSSt? Behave in a manner that indicates Jealousy of infant? Have temper tantrums or anger outbursts? Ac: demanding or nosey? unglug hennaeu|8luunly tenths aluunuw ilnniure Anny ‘nun nuu'nnn lmflne nue‘anni IUfllNr Dunne Insunu Dunne anne- nu3nel blunt! llama: anneal haunt! IIHJII IIHJlI lenses lenses 0 1 2 3 6 s 1 i I i i i i i L , I i t I T . L 203 Does your 32-5 yr} child? 15. “t “| 18. 2!. 22. 23. 24. 25. 26. rnank you for your time. Act restless or nervous with strangers? Seem interested in and curious about his/her surroundings? Talk to feMlIy members? I Become verbally loud and aggressive when frustrated? Tell imaginative stories? Entertain him/herseir? want light on while sieening? Retain and recall something newly learned? lmltlt. adult DCHSViOf? Behave in a manner that indicates Jealousy or your time with and concern for infant? Play make-believe? Have many questions when “9130. .XDIViCflCCS SOMCSHIHQ Uflflflllilr? nee-nu Am! S-IIAI Influx] signal: lmhnm alum-r iii; . .-—.—. h— 4- . r——- -""'1'—"" i— *‘b-- enveiooe afld return to researcner. P'GSS. DISCO COMOIOIOO QUOStIOflflaife in addressed L I St Of References List of References Abramovitch, R., Corter, C., & Pepiar, D. (1980). Observation of mixed sex sibling dyads. Child Development, g1, 1268-1271. American Academy of Pediatrics, Task Force on Prolonged Apnea (1978). Pediatrics, 91 (4), 651-652. American Academy of Pediatrics (July, 1983). Home monitoring and its role in sudden infant death syndrome. Pediatrics, 13 Azarnoff, P., & Hardgrove, C. (1981). The family in child health care.‘ New York: John Wiley. Bank, 8., & Kahn, M. (1982). The sibling bond. New York: Basic Books, Inc. Barker, R., Dembo, T., and Lewin, K. (1976). Anger and regression. Iowa: University of Iowa Press. Barr, A. (1979). At home with an apnea monitor: A guide for new parents. National Foundation for Suddent Infant Death Syndrome Publication. Bauman, D. (1983). Coping behavior of children experiencing powerlessness from loss Of mobility. In J. F. Miller, Coging with chronic illness: Overcoming powerlessness. Philadelphia, PA: F. A. Davis Company. Beckwith, B. (1975). The sudden infant death syndrome. U. S. Department of Health, Education and Welfare Publication, DHEW Publication No. (HSA) 75-5137. Black, L., Hersher, L., & Steinschneider, A. (1978). impact of apnea monitor on family life. Pediatrics, §g (5). 681-685. Borg, w., & Gail, M. (1979). Educational research. New York: Longmah. Bowiby, J. (1980). Attachment and loss, Volume III: Loss, sadness and depression. New York: Basic Books, Inc. 204 205 Bowiby, J. (1973). Separation, Volume II.‘ New York: Basic Books, Inc. Brady, J., Ariagno, R., Watts, J., Goldman, S., & Dumpit, F. (1978). Apnea, hypoxemia and aborted sudden infant death syndrome. Pediatrics, gg (5), 686-691. Brammer, L., & Abrego, P. (1981). Intervention strategies for coping with transitions. Counseling Psychologist, g (2), 19-33. Brazeton, T. (1974). Toddler and parents: A declaration of -lndependence. New York: Dell Publishing Company. Brenner, A. (1984). Helglng children cope with stress. Massachusetts: Lexington Books. Cain, L., Kelly, D., & Shannon, 0. (1980). Parents' perception of psychological and social Impact of home monitoring. Pediatrics, fig (1), 37-40. Cairns, H., Clark, 6., Smith, 8., & Lansky, S. (1979). Adaptation of siblings to childhood malignancy. Journal of Pediatrics, g; (3), 484-487. Carandang, M., Foiklns, C., Hines, P., & Steward, M. (1979). The role of cognitive level and sibling Illness In children's conceptualization of Illness. American Journal of Orthopsychlatry, 1g (3), 474-481. Care-Tech Home Monitoring Service (1986). Turwill Lane, Kalamazoo, Michigan. Crain, A., Sussman, M., & Well, W. (1988). Family Interaction, diabetes and sibling relationships. The International Journal of Social Psychiatry, 1; (1), 35-43. DiMaggio, G., & Sheetz, P. (1983). The concerns of mothers caring for an infant on an apnea monitor. Maternal Child Nursing, g (4), 294-297. Duncan, J., & Webb, L. (1983). TeaChlng families home apnea monitoring. Pediatric Nursing, g (3), 171-175. Dunn, J., & Kendrick, C. (1982). Siblings' love, envy, and understanding. Cambridge: Harvard University Press. Dunn, J., & Kendrick, C. (1980). The arrival of a sibling: Changes in patterns of Interaction between mother and first born child. Journal of Psychology and Psychiatry, g1, 119-132. 206 Dunn, J., Kendrick, C., & MacNamee, R. (1980). The reaction of first born children to the birth of a sibling: Mothers' reports. Journal of Child Psychology and Psychiatry, 3g, 1-18. Erlkson, E. (1983). Childhood and society. New York: W. W. Norton Company. Favorlto, J., Pernice, J., & Ruggiero, P. (1979). Apnea monitoring to prevent SIDS. American Journal of Nursing, 13 (1), 101-104. Feirlng, C., Lewis, M., & Jasklr, J. (1983). 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