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VV H V VV..V I I .V V .t. V I . V .V . v . . .VVV . I V V . , II V .. VV VI.V VV. . A .V V. .. ..V.. II . V. V .I 1.. V ... anVX. .V...4.I_ a n V. . .. .. . . V .V V V . V V . 03 Date OJRQ 3%47‘60? llllllllllllllllllllllllllllllllllllll‘lllllllllllllllllllll 3 1293 00784600 LIIRARY Michigan State ,V Unlverslty This is to certify that the thesis entitled CAEDA DE MOLLERA: PERCEPTIONS OF HISPANIC MIGRANT FARMWORKERS RELATED TO THE RECOGNITION OF "SUNKEN FONTANEL" IN INFANTS presented by Patricia Ann Darling has been accepted towards fulfillment of the requirements for Master of Science degreein Nursing Major professor May 18, 1992 MS U is an Affirmative Action/Equal Opportunity Institution PLACE IN RETURN BOX to remove this checkout from your record. :I’O AVOID FINES return on or before date due. DATE DUE DATE DUE DATE DUE V__V_ J * :___V__\\ L1 ' l \ V iVV V—J \ usu is An Affirmative Action/Equal Opportunity Institution cWMpma—nt CAIDA DE MOLLERA: PERCEPTIONS OF HISPANIC MIGRANT FARMWORKERS RELATED TO THE RECOGNITION OF "SUNKEN FONTANEL" IN INFANTS BY Patricia Ann Darling A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1992 ABSTRACT CAIDA DE MOLLERA: PERCEPTIONS OF HISPANIC MIGRANT FARMWORKERS RELATED TO THE RECOGNITION OF ”SUNKEN FONTANEL" IN INFANTS BY Patricia A. Darling A descriptive study of eight Hispanic women who are migrant farmworkers was conducted to determine the current perceptions of the Mexican folk disease, caida de mollera, i.e. sunken fontanel. The study, using Grounded Theory Methods, focused on three aspects of their perceptions, i.e. belief, cause and signs and symptoms. Data were obtained through interviews to obtain demographic data and a series of open-ended questions pertaining to the subjects folk beliefs related to caida de mollera. 'The results indicate these subjects believe in caida de mollera which they feel is caused by rough handling of the infant, removing the nipple while sucking and accidental falls. The significance and distinctions of diarrhea as a symptom of infant illness was explored. Additional findings stress the importance of the lay referral network in the decision making regarding infant illness. Recommendations were made for nursing practice and research for those working with the Hispanic migrant farmworker population. Escribo con la tinta de mi sangre. It is like a cactus needle embedded in the flesh. It worries itself deeper and deeper, and I keep aggravating it by poking at it. When it begins to fester I have to do something to put an end to the aggravation and to figure out why I have it. I get down deep in the place where it’s rooted in my skin and pluck away at it, playing it like a musical instrument - the fingers pressing making the pain worse before it can get better. Then out it comes. No more discomfort, no more ambivalence. Until another needle pierces the skin. That's what writing is for me, an endless cycle of making it worse, making it better, but always making meaning out of the experience whatever it may be (pp. 36-38). Anzaldu’a, G. (1988). Tlilli, Tlapalli: The Path of the Red and Black Ink, he a nual F'v : M t' ultural Literacy. Saint Paul, MN: Graywolf Press. This project is Dedicated to Frank Lee Earley who first introduced me to the concept of Cultural Awareness. iii ACKNOWLEDGMENTS I wish to thank my Thesis Committee for their encouragement and support: Rachel Schiffman Patty Peek Barbara Sparks Linda Beth Tiedje I would like to thank Melba Hinojosa for reviewing the audiotapes and Vivian Dennison for her suggestions and support during the final stages of the process. In addition, I would like to thank Consuelo, Luz Marie, Irene, Teresa, Fidela, Guadalupe, Celia, Maria Piedad and Ester who allowed me a glimpse of their heart and mind. Finally, I wish to thank my family, Peter, Tom and Ann, for their patience and love during this education process. iv LIST OF TABLES . . LIST OF FIGURES . . CHAPTERS I. II. INTRODUCTION TO THE PROBLEM TABLE OF CONTENTS Introduction Need for the Study Purpose of the Study Statement of the Problem Conceptual Definitions Overview of the Chapters CONCEPTUAL FRAMEWORK Overview King’s Theory . Influences on Perception The Role of the Nurse . Limitations of King's Conceptual Framework Strengths of King's Conceptual Framework Summary . ix 11 11 13 17 19 20 21 TABLE OF CONTENTS (Continued) III. LITERATURE REVIEW Overview . . . . . . . . . . . . . . . . . Discussion of the Literature . . . . . . . Fluid Balance Disturbance . . . . . . Caida de mollera . . . . . . . . . . . Cause . . . . . . . . . . . . . . Signs and Symptoms . . . . . . . Incidence of caida de mollera . . Responsibility for Infant Health Care . . . Strengths and Limitations of the Literature Value of this Study . . . . . . . . . . . . Summary 0 O O O O O O O O O O 0 O O O O O 0 METHODS Introduction . . . . . . . . . . . . . . . Introduction to Grounded Theory Methods . . Reliability and Validity . . . . . . . . . Validity . . . . . . . . . . . . . . . Internal Validity . . . . . . . . External Validity . . . . . . . . Reliability . . . . . . . . . . . . . Internal Reliability . . . . . . External Reliability . . . . . . The Setting . . . . . . . . . . . . . . . . Subjects . . . . . . . . . . . . . . . . . vi 22 22 23 24 24 25 26 26 27 27 28 29 29 31 32 32 33 34 34 35 35 36 IV. V. TABLE OF CONTENTS (Continued) METHODS (Continued) Protection of Human Subjects . . . . . The Instrument . . The Translator . . The Pilot Study . . Data Collection and Analysis . . . . . Agency Cooperation . Data Collection Data Analysis Assumptions and Limitations . . . . . . Assumptions . Limitations . Summary . . . . . . RESULTS OF THE STUDY Overview . . . . . Demographics of the Subject's Knowledge Susceptibility . . Cause of caida de mollera Signs and Symptoms Diagnosis . . . . . Differential Diagnosis of Feelings . . . . . Seriousness . vii Subjects . . . . . of caida de mollera 38 4O 43 44 45 45 46 50 54 54 54 55 56 56 57 60 61 62 64 67 68 69 TABLE OF CONTENTS (Continued) v. RESULTS or THE STUDY (Continued) Feelings (Continued) Blame for Illness Role of Extended Family and Migrant Community Role of the Father of the Baby The Mother's Decision Making Role of the Biomedical Health Care Provider Summary . . . . . . . VI. SUMMARY AND CONCLUSIONS Introduction . . . . Summary of Research . Discussion . . . . . Implications for Advanced Client Advocate Assessor . . . . Educator . . . . Implications for Nursing Research Summary . . . . . . . REFERENCES . . . . . . . . . . APPENDIX A APPROVAL FROM UCRIHS . . . APPENDIX B LETTERS OF CONSENT AND AGREEMENT viii Nursing 69 71 73 74 75 77 78 78 81 85 85 86 89 92 96 98 101 102 APPENDIX C APPENDIX D APPENDIX E APPENDIX F TABLE OF CONTENTS (Continued) APPENDIX B (Continued) LETTERS OF CONSENT AND AGREEMENT (Continued) Pilot Study Consent: English Pilot Study Consent: Spanish Research Consent: English . Research Consent: Spanish . Translator Agreement . . . . INTERVIEW GUIDE . . . . . . . . . Demographic Data . . . . . . Initial Interview . . . . . . Final Interview . . . . . . . AGENCY COOPERATION . . . . . . . . TRANSLATOR ACCURACY . . . . . . . MAP OF MEXICO: GEOGRAPHIC SUBJECTS O O O O O O O O O O O O 0 ix 102 103 104 105 107 108 108 109 111 114 115 DISTRIBUTION OF 116 Table 1. Table 2. LIST OF TABLES Demographic Data Describing Subjects Descriptive Signs and Symptoms of caida de mollera . . . . . . . . Figure Figure Figure Figure LIST OF FIGURES Process of Human Interactions as applied to the study (King, 1981) . . . . . . . . . . 14 Human Interactions: Factors influencing the perceptions of the signs and symptoms of caida de mollera . . . . . . . . . . . . . . . . 15 Perceptions of Hispanic migrant farmworkers regarding caida de mollera: Using Grounded Theory Methods . . . . . . . . . . . . . . 53 The Adaptation of King ' s Process of Human Interaction Between the Nurse and the Mother Of a SiCk infant O O I O O O O I O O O O O 82 xi CHAPTER I INTRODUCTION TO THE PROBLEM Introduction Hispanic migrant farmworkers comprise a majority of the seasonal farm labor force in western Michigan. This influx into the dominant white "Anglo" population causes unique problems for health care providers, who are generally part of the dominant culture. Primary health care providers (PHCP) are frequently frustrated with the episodic utilization of health care services, and the low rate of compliance to biomedical treatment by the migrant farmworker population. The lack of compliance with biomedical treatment has been attributed, by health care providers serving the migrant farmworker population, to many factors such as access to available health care services, failure of the patient to understand treatment expectations and the lack of continuity of health care due to the mobility of the migrant population. The impact of the Hispanic belief in folk disease and folk treatment on the utilization of biomedical treatment strategies by the Hispanic migrant farmworkers maybe underestimated by the PHCP. Need for the Study The symptoms of illness experienced by the Hispanic migrant farmworker frequently lead to self-diagnosis of a folk disease. In treating this folk disease the Hispanic migrant farmworker may not seek biomedical health care, rather he/she 2 may utilize a variety of folk treatments. The use of folk treatment may cause a delay in accessing biomedical health care services. When biomedical treatment is sought by the Hispanic migrant farmworker there may be conflicts between the biomedical treatment proposed by the PHCP and the folk illness beliefs of the individual. Lack of understanding of the Hispanic folk illness beliefs by the "anglo" primary health care providers may create barriers to communication, which in turn fosters noncompliance to the biomedical treatment by the Hispanic migrant farmworker population. This barrier to communication between the PHCP and the migrant farmworker can be a further negative influence on the Hispanic migrant farmworkers' participation in the biomedical health care system. The conflict between the cultural belief systems of folk medicine and biomedicine occurs when the process of recognition and identification of the signs and symptoms of illness result in a difference in the labeling of the illness as disease according to Kleinman (1980). This difference in the labeling of the disease process as folk or biomedical disease will be the primary factor in the decision making which determines the treatment of the illness. The difference in the process of labeling or naming a disease is influenced by the individual's perception of the cause, the seriousness of the illness and the course of the disease both with and without treatment (Kleinman, 1980). This conflict in perceptions between the folk and biomedical belief systems may 3 cause a breakdown in communication between the biomedical health care provider and the Hispanic family. This breakdown in communication may also prevent the Hispanic migrant farmworker from accessing the biomedical health care system if it is felt that the illness will not be understood by the biomedical health care provider. This failure in communication between the health care provider and the Hispanic patient is a barrier to negotiating mutually agreed upon treatment strategies which may endanger the sick individual due to delays in initiating and complying with biomedical treatment. The health care provider who is aware of the Hispanic folk illness.beliefs andxtheir’associated folk treatments may be better able to negotiate appropriate biomedical treatment strategies with the Hispanic migrant farmworker. Purpose of the Study There are many folk diseases which are recognized by the Hispanic migrant farmworker population. The purpose of this study is to describe the current beliefs of women, who are Hispanic migrant farmworkers, regarding one folk disease, caida de mollera. This study will describe the recognition of the existence of caida de mollera, its cause, and the signs and symptoms of disease which are identified as being associated with caida de mollera, by women who are Hispanic migrant farmworkers. 4 Statement of the Problem In order to gain a better understanding of the Hispanic migrant farmworkers perception about the folk disease caida de mollera, research is needed to explore various aspects of the illness experience. While the literature contains numerous descriptions of caida de mollera, no literature was found which described the belief system of this folk disease in this particular population of Hispanic migrant farmworkers. This study was an attempt to identify the current beliefs of women in the Hispanic migrant farmworker population in western Michigan regarding the folk disease, caida de mollera. The focus of this research included the following questions: 1. Do women who are Hispanic migrant farmworkers believe in the existence of caida de mollera as a folk disease affecting infants? 2. What do women who are Hispanic migrant farmworkers perceive as the cause of caida de mollera? 3. What are the signs and symptoms of caida de mollera as identified by the women who are Hispanic migrant farmworkers? Conceptual Definitions In order to better understand the research issue the following concepts or terms used within the context of this research study must be clarified: W. In an infant, this is an area of unossified membranous tissue measuring 2.5 cm. along the 5 coronal suture.and.4.0 - 5.0 cm. along the sagittal suture and is» described as feeling flat, firm, and. well-demarcated against the bony edges of the skull. The anterior fontanel should be closed by twenty months of age according to Whaley and Wong (1987, pp. 308-309). ggida de mollera. This folk disease, translated as sunken fontanel, is described by several authors as one which a dropping of the mollera (fontanel) of the infant's skull results in the blocking of the oral passages due to associated displacement of the upper palate in the mouth. The signs and symptoms which are associated with caida de mollera include depressed anterior fontanel, decreased ability to nurse or suck, excessive crying or restlessness, fever, sunken ”heavy" eyes, vomiting, and diarrhea (Abril, 1975; Ehling, 1981; Johnson, 1979; Kay, 1977; Martinez, 1966; Rubel, 1960; Torres, 1983). This folk disease closely parallels a biomedical condition described as fluid balance disturbance. Eluid_figlange_ni§turbangg. As described by Metheny and Snively (1983), this is an alteration in the normal functioning of the body due to any one of several disease processes which cause diarrhea, vomiting, and.which result in dehydration. The signs and symptoms which are suggestive of this diagnosis in infants include poor skin turgor, dry mucous membranes of the mouth, changes in respiratory rate, depth, and pattern, absence or decrease in tearing and salivation, increased thirst, high pitched cry, alteration in body 6 temperature, decreased urinary output, sunken eyes, gray mottled skin, and depressed anterior fontanel. Culture. For the purpose of this study the definition proposed by King (1981) will be used. King (1981) describes culture as a dynamic structure which is part of us all, . . . a pattern of living, a way of behaving, thinking, believing, valuing and feeling that is cumulative from one generation to another and that changes in the process of cross cultural contact (p. 115). The biomedical health care system has been viewed by Brink (1976) and Leininger (1978) as a unique culture complete with its own system of beliefs, values, behaviors and language. The concept of culture provides the individual with a way of interpreting the signs and symptoms of illness. In addition, culture allows the individual to label the illness either as folk or biomedical disease to the individual and to society. Hispanic. Individuals whose first language is Spanish are described by this term. Individuals in the migrant farmworker population describe themselves using several terms, such as Mexican or Mexican-American. Because there is no consistent use of the term among the Spanish speaking population either based on place of birth or immigration status the term Hispanic will be used for the purpose of this study to refer to the migrant farmworkers in western Michigan whose primary language is Spanish and whose cultural heritage can be traced to Mexico. M1grant_fiarmwgrk§r§. These are individuals who earn all or part of their income by performing seasonal farm labor in 7 more than one area of the United States. The migrant farmworkers in this study reside in the western portion of the lower peninsula of Michigan during the growing season. The remaining portion of the year these workers reside and work in either Florida, Texas, or Mexico. lllnsss. This concept is defined by King (1981) as, a deviation from normal, that is an imbalance in a person's biological structure or in his psychological make-up, or a conflict in a person's social relationships (p. S). This term according to Wu (1973) includes the meaning or significance attached to the clustering of signs and symptoms by which.the individual and the family labels the deviation or imbalance. For the purpose of this study illness will refer to the collection of signs and symptoms which are labeled by the mother as a deviation from the usual state of health of the infant. Signs. These are defined by Wu (1973) as "observable changes in the structure and or function of the body that define illness" (p.27). For the purpose of this study the signs of illness in the infant which are of interest are those perceived by the Hispanic mother as caida de mollera. fiymnngns. These are subjective perceptions which indicate an alteration in the health status to the individual, according to Chrisman (1977). For the purpose of this study the symptoms experienced by the infant are based on the mother’s interpretation of the infant’s behavior which she perceives as an alteration from the infant's normal state and 8 is the attribution.of feelings experienced.by the infant, such as referring to the infant's fussiness being due to frustration at inability to suck. Esrssnnlsn. This has been defined by King (1981) as, a process of organizing, interpreting and transforming information from sense data and memory. It is a process of human transactions with environment. It gives meaning to one’s experience, represents one’s image of reality, and influences one’s behavior (p. 24). Thus, for the purpose of this study it is recognized that two individuals can transform the information of the signs and symptoms of an infant illness experience and develop two separate labels of a disease process based on their individual experience, memory and method of organizing and labeling data which is meaningful for the individual. Disssss. This term is defined in Dorland (1988) as, any deviation from or interruption of the normal structure or functioning of any part, organ or system (or combination there of) of the body that is manifest by a characteristic set of symptoms and signs whose etiology, pathology and prognosis may be known or unknown (p. 481). Kleinman (1980) has defined the concept of disease as it relates to illness as follows, Disease refers to a malfunctions of biological and/or psychological processes, while the term illness refers to the psychosocial experience and meaning of perceived disease (p. 72). For the purpose of this study two types of disease will be defined. Bignsdisnl__glsssss. These are diseases which are recognized by the biomedical health care system. These 9 diseases are recognized as being caused by an alteration in the physiological or psychological functioning of the individual, as a result of pathology which may be known or unknown. £9lk_plsssss. This term is generally described in the literature as folk illness and is recognized as, a syndrome from which members of a particular culture claim to suffer and for which their culture provides etiology, diagnoses, preventive measures and regimens of healing (Rubel 1977, p. 120). These folk diseases generally may not be recognized by the biomedical health care system. Caida de mollera is one of many folk diseases recognized by the Hispanic culture. QBIQDQQIQ_QI_§BIQBQ§£Q- This is an individual, either male or female, in the Hispanic culture who is viewed as a professional healer of folk diseases. Overview of the Chapters The identification and discussion of King’s (1981) process of human interaction, as it applies to study, is utilized as a conceptual framework for the basis of the research study. This study uses the portion of King's (1981) process of human interaction, i.e. the perception of the patient, as the basis for this study. The discussion of King' s conceptual framework as it applies to this study appears in Chapter II. The review of the literature related to the folk illness beliefs of the Hispanic culture is used as the basis for exploring the perceptions of this subgroup of 10 the Hispanic population i.e. the Hispanic migrant farmworker. The implications of the literature reviewed and its impact on this study will also be discussed and summarized in Chapter III. Chapter IV provides a description and discussion of the methods and procedures utilized during this research study. The perceptions of the population of Hispanic migrant farmworker women relating to caida de mollera were identified using qualitative research methods as outline by Grounded Theory. In Chapter V the results are presented. The demographics of this sample of the population of Hispanic migrant farmworkers in western Michigan is described. Direct quotations from the interview texts are utilized to substantiate interpretations made from the data. Chapter VI provides an overview' of the study's findings and. their implications for nursing practice and further research within this Hispanic migrant farmworker population. CHAPTER II CONCEPTUAL FRAMEWORK Overview This chapter outlines the conceptual framework of the process of Human Interaction as described by King (1981). The relationship of the King's model to this research study is described. King's Theory King's theory of Goal Attainment describes the nature of the existence of the nurse-patient relationship. For the purpose of this study, references to "the patient" will refer to the Hispanic mother who is acting on behalf of the sick infant. In order for the nurse to serve the needs of the patient there must be a communication which leads to the achievement of health care goals. King has described the theory of Goal Attainment as, . .. . a standard for nurse-patient interactions, namely that nurses purposefully interact with clients mutually to establish goals and to explore and agree on means to achieve goals. Mutual goal setting is based on the nurse's assessment of client's concerns, problems, and disturbances in health, their perceptions of problems, and their sharing information to move toward goal attainment (pp. 142-143). One of the major features of the theory of Goal Attainment is the Process of Human Interaction, depicted in Figure 1. This concept describes the process of communication between the nurse and the patient which is the basis mutual goal setting to achieve the health care needs of the patient. 11 12 Interaction is defined by King (1981) as, . . . a process of perception and communication between person and environment and between person and person, represented by verbal and nonverbal behaviors that are goal-directed. In person-to- person interactions , each individual brings different knowledge, needs, goals, past experiences, and perceptions, which influence the interaction (p. 145). In order to develop mutual goals the nurse and the patient must interact in an ongoing process of action, reaction, interaction, and transaction. This process of interaction affects the participants’, i.e. the nurse and the patient, communication through a feedback loop which is influenced by each individual's perceptions of the communication involved, their previous experiences and their social and physical environment. The most important aspect of the process of human interaction is the recognition of the importance of individual's perceptions as they impact on the process of communication. Perception as defined by King (1981) as each persons representation of reality. She states, One's perceptions are related to past experiences, concept of self, socioeconomic groups, biological inheritance, and education background. . . perception is each person' s subjective world of experience (p. 146). The perceptions of the individual influence the judgement of the individual. Judgement is the value or moral interpretation of the event or communication based on the meaning of the event to the individual. The judgement of the individual is directly related to the his/her perception of an 13 event or interaction and forms the rationale for actions taken by the individual. This study dealt with the process by which mothers who were Hispanic migrant farmworkers labeled perceptions of infant illness as caida de mollera. The aspects of King’s model which were utilized as the basis of this research are depicted in bold type in Figure 1. 'The process of labeling an illness experience is based on the individual's judgement which is influenced by their perceptions of the event. Influences on Perception In order to determine the process of labeling an illness episode, the factors which influence the individual's perceptions must be explored. These factors will influence the nurse as well as the patient and are indicated in Figure 2. However, only' the factors influencing' the ‘mother's perceptions, depicted in bold type in Figure 2, are explored within the scope of this study. The factors which were felt to influence the mother's perception include the signs and symptoms of illness, the mother's perception of the possible cause of the signs and symptoms, the susceptibility of the infant to the illness, the seriousness of the disease, the mother's previous experience with childhood illnesses. The signs and symptoms of illness are organized and classified by the individual based on their knowledge of the causes of disease. The signs and symptoms may be viewed as being caused by either folk or biomedical disease. The 14 F FEEDBACK HISPANIC Perception of MOTHER ceide de mollera ( P Judgement l' Action / Reaction —=-Interaction -—Trarsaction Action ‘ P NURSE Judgement Perc£ption F FEEDBACK Figure 1 ss of a ' ns 8 a lies to e tud 15 Knowledge of caida de mollera Possible causes of Previous Experiences ' d Slam an symptoms with Biomedical Health Care Seriousness of signs and symptoms Susceptibility of infant to illness Previous Experience with childhood Cultural illnesses Socialization as a Mother in the Hispanic migrant R // FEEDBACK '7 community \ Perceptions , _ Judgement Hispanic (label: caida de mollera) Mother R Action Reaction —7 Interaction —7 Transaction Infant: Action Presenting V Signs and Judgement symvtoms Nurse (label: Fluid balance) (CNS) disturbance Cultural Perceptions Socialization as r \ a CNS in the * FEEDBACK — a; S 'cal Health Susceptibility of vious experiences with to ys m infant to illness childhood illnesses Seriousness of illness Previous experiences signs and symptoms with Hispanic . folk illness beliefs Posmble causes of signs and symptoms Figure 2 Human interaction: Factors influencin the rec tions of si s and s toms of caida de mollera 16 labeling of the signs and symptoms of illness as being the result of folk or biomedical disease is based on the individuals cultural background. Mechanic (1978) has stated, Reactions to illness are descriptive of the cultural and historical situation at a particular point in time (p. 259). Cultural beliefs related to illness change over time and are influenced by the socialization to specific cultural beliefs and by the individual's exposure to the beliefs of the dominate biomedical culture. As Kleinman (1978) has stated, Illness behavior is a normative experience governed by cultural rules . . . there can be marked cross- cultural and historical variation in how disorders are defined and coped with. The variation maybe equally great across ethnic, class and family boundaries in our own society. And doctor's explanation and activities, as those of their patients, are culture-specific (p. 252). Therefore, how'the individual labels the signs and symptoms of illness are determined by the cultural based classification system ‘which he/she has been taught as a part of the socialization process. Included in this process is the patient's perception of the susceptibility and seriousness of the illness. The mother’s perception of the infant's susceptibility has been described by Mikhail (1981) as "the probability of progressive effect or recurrence of illness" (p. 68). The perception of the seriousness of the illness is defined by Mechanic (1978) as "the person’s estimate of the present and future probabilities of danger" (p. 268). 17 The mother's previous experience with the biomedical health care system will influence her future perceptions. King (1981) has recognized this potential for disagreement between the nurse and the patient in how a given illness experience may be labeled. She describes the following influences on the perception and interaction of individuals, Social class, role, status, and ethnic values appear to be critical variables that enter into the perception and interaction (p. 115). Both the client and the nurse are a product of their social-cultural system. Biomedical health care may not share the same value and belief system as individuals from other cultures, within the same social system. An example of these cultural differences in labeling an illness experience is the biomedical. health. care jproviders label of fluid balance disturbance versus the Hispanic migrant farmworker's label of caida de mollera for a very similar group of signs and symptoms which make up an infant illness experience. The Role of the Nurse The role of nursing must be to deliver health care in spite of the cultural differences between people and how an illness experience may be labeled. Brink (1976) has described the focus of nursing as, Health care delivery to the consumer within his cultural context; this requires of the nurse a sensitivity to the differences between her own and the patient's cultural background (p. 32). The nurse-patient interaction forms the basis of nursing. 18 King (1981) defines nursing as, . . . a process of human interaction between the nurse and the client whereby each perceives the other, and the situation, and through communication they set goals, explore means, and agree on means to achieve goals (p. 2). The patient's interaction with the nurse according to Mechanic (1978) is based on the "cultural and social accessibility” of the nurse as a health care practitioner. Mechanic (1978) has further described, The use of a particular help practitioner also depends on his cultural and social accessibility. Accessibility refers to whether or not the practitioner is perceived as responding to the person and his illness within a framework consistent with the patient's cultural expectations, the degree of stigma or social threat implied in using his services, anticipation of humiliation resulting from treatment or from the manner in which the practitioner handles the patient, as well as other factors describing the kind of relationship that develops between the practitioner and the patient (p. 287). Therefore, the success of nursing is based on the success of the nurse-patient interaction which is based on their ability to communicate. Communication is described by King (1981) as the ”interchange of thoughts and opinions among individuals" (p. 62) . Communication can be verbal through the used of language and speech or non-verbal through the use of gestures, facial expressions, actions, and postures of listening and of feeling. Communication between individuals is based on each individual's perception of the other. Inaccurate perceptions may result in the breakdown in communication between individuals. King (1981) states, 19 Communication is influenced by the interrelationships of a person's goals, needs, and expectations and is a means of information exchange in one’s environment. To be effective, communication must take place in an atmosphere of mutual respect and desire for understanding (p. 62). Therefore, the patient who does not perceive that his/her beliefs are respected or understood by the nurse will probably not include a discussion of these beliefs in his/her communication with the nurse. The importance of the nurse- patient communication and interaction between individuals from diverse cultural backgrounds has also been recognized by Brink (1976) . In her discussion of transcultural nursing she states, . . . nursing is also concerned with the symbolic interaction: The communication system used by the nurse and the patient; the values and beliefs which guide behavior; the level at which shared meaning occurs; and finally, what happens when cultural barriers are crossed. Nurse and patient interacts around the concepts of health and illness. The degree to which they agree on what is health, illness, treatment, and cure will affect their subsequent interactions. When nurse and patient do not share a common language, they are unable to discover whether they agree or not. When they share the same language, but do not agree on the meaning for certain.words, their communication will suffer. It is the nurse’s responsibility to discover the degree to which the nurse and the patient share the same goals and the same symbols (p. 32). Limitations of King's Conceptual Framework Based on Fawcett’s (1984) evaluation of King’s Theory as it applies to the understanding of the folk illness beliefs of the Hispanic migrant farmworker several weaknesses become 20 apparent. First, in her discussion of "client participation" as it applies of the elements of mutual goal setting and exploration of means to achieve goals, King fails to define the child care provider's role as she/he acts on behalf of the sick infant. Second, King's definition of illness may lack the scope and flexibility to explain the concept of folk disease and the perception of folk illness among individuals of the Hispanic culture regarding the folk disease, caida de mollera. Therefore, Wu's (1973) definition was used to expand King’s definition. of illness to include the ‘meaning' or significance which the individual or family attaches the cluster of signs and symptoms which has been identified and labeled as illness. Finally, King’s discussion of the environment is vague in its relationship to disease and illness. The close relationship of the Hispanic migrant farmworker to the external environment is a major force in his/her daily life. Their interaction with the external environment and its various public health hazards plays a major role in the health and illness of the Hispanic migrant farmworkers. Strengths of King's Conceptual Framework There are many aspects of King's theory which make this model clearly applicable to the health care needs of the Hispanic migrant farmworkers. First, King, according to Fawcett (1984) recognizes that the individual has, 21 The right to accept or reject care offered by nurses and other health care professionals (p. 100). Second, the discussion of the nurse-patient interaction clearly indicates the perceptions of the patient are valued equally to the perceptions of the nurse, and that these perceptions may not be of the same reality. The recognition and the value of the perceptions of the Hispanic migrant farmworker by King allows the development of health care goals to be based on a mutual interaction. This conceptual framework, unlike many other, allows the nurse to be open to learn from the patient. This ability to learn from the patient allows us to grow as nurses. Summary King's (1981) concept of human interaction will be used to explore a portion of the process of interaction between the nurse and the Hispanic migrant farmworker in western Michigan. This study explores the perception of the Hispanic related to one Hispanic folk illness, caida de mollera, the signs and symptoms of which would be recognized by nurses as a fluid balance deficit. The recognition of the perceptions of the Hispanic migrant farmworker related to the belief in caida de mollera, its causes, and its signs and symptoms allow nurses to understand the impact on the process of human interaction, which according to King is the basis of nursing. CHAPTER III LITERATURE REVIEW Overview In this the folk disease, caida de mollera, is described and compared to the signs and symptoms recognized by biomedicine as fluid balance disturbance. The strengths and limitations are discussed and the value of this study is presented. Discussion of the Literature The literature reviewed addresses the perceptions of the Hispanic population in general. While providing much insight into the folk disease, caida de mollera, there were several major limitations to the literature. First, the literature reviewed fit into two classifications: (1) research based articles, i.e. ethnography, or structured survey interviews (Ehling, 1981; Foster, 1953; Johnson, 1979; Kay, 1977; Martinez, 1966; Rubel, 1960); (2) articles which were a combination of a review of literature and a report of the literature and a report of the personal experience of the author (Abril, 1975; Torres, 1983). Secondly, none of the articles reviewed reflected research that had been carried out in the Hispanic migrant farmworker community. While it can be presumed that the Hispanic migrant farmworkers share many of the same cultural beliefs of the larger Hispanic culture, the extent and nature of these beliefs are unknown. 22 23 Finally, the research literature available was based on ethnographic studies that were carried out twenty to thirty years ago, (Foster, 1953; Johnson, 1979; Kay, 1977; Martinez, 1966; Rubel, 1960). Given that culture changes over time it is impossible to determine to what extent the observations reported in the literature continue to be accurate. It was further noted that the literature contained three articles that were written by nurses (Abril, 1975; Ehling, 1981; Kay, 1977). Twolarticles (Foster, 1953; Martinez, 1978) were reprints of articles by anthropologist which were published earlier and later were incorporated into texts edited by nurses. The following portion of this chapter defines fluid balance disturbance and caida de mollera as described by the review of the literature. A comparison of the signs and symptoms of these two causes of illness points out many similarities in the conditions. The description of caida de mollera includes aspects of the folk disease which were explored by this study. a ce 'stur ance The signs of fluid balance disturbance recognized by biomedicine include poor skin turgor, dry mucous membranes of the mouth, changes in the rate, depth, and pattern of respirations, absence or decrease in tearing and salvation, decreased ‘thirst, high. pitched. cry, alterations in Ibody temperature, decreased urinary output, sunken eyes, mottled skin, and a depressed anterior fontanel (MacKenzie, Barnes & 24 Shann, 1989; Metheny 8 Snively, 1983). There are many causes of fluid balance disturbance recognized by biomedicine. Fluid balance disturbance is viewed as a sign of underlying disease pathology which cause diarrhea, vomiting, excessive perspiration, or fluid and electrolyte imbalance (Chow, Durand, Feldman 8 Mills, 1984; Gottlieb, 1983; Hamilton, 1985; MacKenzie, Barnes 8 Shann, 1989; Metheny 8 Snively, 1983). W Caida de mollera is recognized as a folk disease affecting infants in the Hispanic culture. The translation of caida de mollera into English is "sunken fontanel", referring to a depression of the anterior fontanel of the infant's skull. According to Rubel (1960) caida de mollera is viewed as an illness caused by misplaced body parts or organs. IRubel (1960) describes the Hispanic perception of the anatomy and physiology involved, Infants are conceived of . .. . as possessed of a fragile skull formation. The skull includes a section which in this immature stage easily slips or is dislodged from its normal position. The mollera (fontanel) is that part of the skull pictured as sitting at the very top of the head. It is normally sustained in proper position by the counter-poised pressure of the upper palate {in the mouth} (p. 797). Cause Caida de mollera is the folk disease, occurring under six months of age, which results when the mollera (fontanel) is displaced downward from its normal position. According to folk tradition, this displacement causes the upper palate in the mouth to drop blocking the oral passages. Several 25 recognized causes for this displacement were identified in the literature. It may be caused by a fall (either witnessed or presumed) by the infant (Rubel, 1960; Martinez, 1966; Abril, 1975; Ehling, 1981). Rough handling or bouncing the baby in play may accidentally cause the fontanel to drop (Abril, 1975; Ehling, 1981; Torres, 1983). Removing the nipple (breast or bottle) too quickly from the baby's mouth while he is sucking may also cause caida de mollera (Abril, 1975; Ehling, 1981; Johnson, 1979; Kay, 1977; Martinez, 1966; Torres, 1983). Torres (1983) reports "the baby can cause it himself by sucking too greedily" (p.15). MW There are a series of signs and symptoms identified with caida de mollera: (a) a depressed anterior fontanel; (b) inability to grasp the nipple and nurse effectively; (c) unusual or excessive crying restlessness, or insomnia; (d) fever; (e) sunken or "heavy" eyes; (f) vomiting; and (g) diarrhea or loose stools (Abril, 1975; Ehling, 1981; Johnson, 1979; Kay, 1977; Martinez, 1966; Rubel, 1960; Torres, 1983). Attempts to suck are accompanied by slurping sounds and smacking of the lips, according to Martinez (1966). It is interesting to note that caida de mollera is felt to cause diarrhea. Johnson (1979) reported that one of her informants stated, "caida is the real cause of diarrhea in babies” (p. 71). Kay (1977) reports ". . . Many informants see deshidratacion (dehydration) or carencia de aqua (lack of water) as synonymous with caida de mollera" (p. 135). Perhaps 26 the Hispanic description of the relationship between caida de mollera and dehydration that Kay (1977) reported may be used to assess the acculturation of the Hispanic to the biomedical perspective of disease. An example of this acculturation may also be seen in the description of caida de mollera reported by Torres (1983), The symptoms are irritability, diarrhea and vomiting. The baby thus becomes dehydrated and exhibits the most prominent symptom, the one that gives the condition its name, a depressed fontanelle {soft spot} (p. 15). Insinsnss sf caida ge mollera It was not possible to tell from the articles reviewed what the incidence of caida de mollera is in the Hispanic population, although several references were made to the occurrence of caida de mollera. Ehling (1981) reports that caida de mollera is the most common folk disease affecting infants. Baca (1978) and Abril (1975) recognized that caida de mollera is the most common and prevalent condition in the category of organ displacement within the Hispanic folk disease classification system. Responsibility for Infant Health Care It has been reported that women in the Hispanic cultural are given the major responsibility for child care and decisions regarding illness. If an infant is ill and the mother does not know what to do she would probably seek 27 advice from another woman generally a close kin. No other studies addressed the process by which the mother seeks advice regarding the health care of her infant. Strengths and Limitations of the Literature The literature, in spite of being twenty to thirty years old, gives a thorough description of the presenting signs and symptoms and. the perceived causes of caida de 'mollera. However, the literature fails to give an accurate description of the incidence of caida de mollera within a population. Given that acculturation occurs over time, there is no way of knowing if the description of caida de mollera has changed within the Hispanic population. Articles found in the nursing literature were reprints of articles based on anthropological research or descriptions of the personal experiences of the author. There were no research based articles in the nursing literature which dealt with Hispanic folk illness beliefs. Finally, there were no articles which dealt with the perceptions of Hispanic migrant farmworkers related to caida de mollera. Value of this Study This study is valuable in that it is a research focused description of the current folk illness beliefs on caida de mollera of an Hispanic migrant farmworker population. This research adds to the existing literature in that no research articles dealing with caida de mollera were found in the 28 literature. This study also gives nursing insight into one of the many folk illness beliefs of the Hispanic population. In addition, this study can be used as a basis of comparison for the folk illness beliefs in other Hispanic populations. Summary Caida de mollera was described as a folk disease affecting infants and small children which is a part of the health belief system of the Hispanic culture. The folk disease, caida de mollera, as described in the literature, is a condition which closely parallels the biomedical condition described as fluid balance disturbance. The seriousness of fluid balance disturbance to infants is documented in the literature. Therefore, the folk disease, caida de mollera, can be considered a threat to infant health. CHAPTER IV METHODS Introduction In this the methods used to determine the Hispanic migrant farmworkers perception. of caida de :mollera, are described. The outlines the subject identification, subject selection, pilot study, interview techniques, and data analysis procedure. Introduction to Grounded Theory Methods Grounded Theory was developed by Glaser and Strauss in the mid 1960's. Since that time Stern (1986) and others have attempted to clarify the process by which Grounded Theory is utilized in qualitative research. According to Stern (1986): The term grounded theory refers to data grounded in facts and generating theory from the data. The grounded theorist looks for the process involved rather than static conditions. . . . the basic assumption of grounded theory is that not everything has been discovered yet. Hypotheses are linked together so that the investigator is able to present an integrated theory to explain the problem under study (p. 150). Glaser (1978) reports that grounded theory allows researchers: . . . to discover what is going on rather than assuming what should be going on, as required in a preconceived type research (p. 159). The use of Grounded Theory allowed the researcher to discover the perceptions of the Hispanic migrant farmworker population of western Michigan rather than assuming that their beliefs would be the same as other Hispanic populations described in 29 30 previous research. Given that acculturation occurs as individuals from.differing cultural backgrounds interact with each other, it is important to access the current perceptions of a population rather than relying on information obtained from literature which was written twenty to thirty years ago. Grounded Theory was readily applicable to the naturalistic inquiry of cross-cultural research. According to Stern (1986): By its very nature, grounded theory is applicable to the study of cultures. The qualitative, holistic approach of grounded theory serves as a valuable heuristic in understanding and explaining human experience as it is lived, especially those subjective phenomena that can only be interpreted through the eyes of the beholder or those in which the whole is more than the sum of its parts (p. 3). In grounded theory, data are collected utilizing interviews and observation of subjects. This is done using the technique of theoretical sampling. The initial subjects are chosen from the target.population. .As the process of data collection develops, additional subjects are identified and interviewed in an attempt to discover comparison groups within the population to explain and clarify the emerging theory. Interviews initially may be semi-structured using an interview guide, consisting of a series of open-ended questions. The subjects are interviewed more than once. Between each interview the collected data are analyzed and further questions developed to clarify the emerging theory. The interviews are continued until no new categories are generated and the existing categories are saturated. The data, which 31 are coded throughout the process, are ”clustered into naturally related categories, and compared . . ." categories are "linked and reduced until variables that explain the important processes in the setting" emerge (Stern, 1986, p. 138). After the data collection is completed, the major variables are then compared to existing concepts in the literature. According to Stern (1986): Through integration of ideas, the existing data is used as supporting data for the emerging theory and its woven into its matrix of data, category and conceptualization (p. 13). The purpose of this research study was to describe the current pattern of beliefs of the Hispanic migrant farmworkers’ of western Michigan related to caida de mollera rather than to develop a theory to explain how individuals perceive the relationship between folk and biomedical disease. The process by which the data. was collected in this study is described in following sections. Reliability and Validity The credibility of this research depended on the researcher’s ability to recognize and control the limitations of qualitative research as it related to the study of caida de mollera in this migrant farmworker population. There are several benefits and limitations to conducting cross cultural 32 nursing research using qualitative research methods. The following are definitions of reliability and validity as they apply to this research study. Vslidity According to LeCompte and Goetz (1988) validity "demonstrates that the propositions generated, refined, or tested match the causal conditions which obtain in human life" (p. 43). There are two types of validity which are described within the context of this research study. They are internal and external validity. Innsznsl_ysllglny is the accuracy of the research findings. According to LeCompte and Goetz (1982) internal validity asks the question "Do scientific researchers actually measure what they think they are observing and measuring?" (p. 43). The nature of Grounded Theory includes the following: theoretical sampling, constant comparative data collection and analysis, the translator acting as participant researcher, and the use of demographic data to identify the subject sample. The use of Grounded Theory allowed the data collected from each subject to be clarified by the other subjects. This clarification provided important input needed in the developing analysis of the data by the researcher; The use of the translator, as a participant researcher, helped to verify the meaning behind the translation of the data and to verify the development of possible themes to be explored in greater detail with the subjects. The demographic data collected on the subjects allowed the researcher to identify the 33 characteristics of the subjects within the population being studied. The constant comparison of the data allows the researcher to analyze and clarify all discrepancies in the data. The translator, acting as a participant researcher, provided the researcher an individual from the Hispanic migrant farmworker population as a source of reference. The translator guided the formulation and wording of questions, and the verification of the observations by the researcher, which added to the depth and richness of the data collected. All of these factors acted as effective means of dealing with threats to internal validity. LeCompte and Goetz (1982) have reported, . . . although no research design can identify the precise cause of observer datum, ethnographic data (Grounded Theory) may be quite effective in delineating the most probable causes and in specifying an array of those most plausible (p.50). Exgsznsl_ysll§lny is the extent to which the findings of this study can be applied to other populations of Hispanic migrant farmworkers. This type of validity is described by LeCompte and Goetz (1982) as the extent to which the abstract constructs and postulates generated, refined or tested by scientific researchers is applicable across groups. The very nature of qualitative research makes it impossible for the researcher to design and conduct a research study which can be applied.across.groups. ILincoln.and.Guba (1990) have stated that the researcher, 34 . . . cannot specify the external validity of an inquiry; he or she can provide only the thick description necessary to enable someone interested in making a transfer to reach a conclusion about whether transfer can be contemplated as a possibility (p. 316). Therefore the issue of external validity of this research study will be left for others working with populations of migrant farmworkers. E J' 1.1.! According to LeCompte and Goetz (1982) reliability is seen as the "replicability of scientific findings" (p.32), that is, can the research results be replicated within the same population by repeating the same research study? Reliability addresses this issue of whether or not this researcher or another researcher would arrive at the same results if identical research was conducted within the same Hispanic migrant farmworker population. The following discussion related to the reliability in qualitative research includes factors influencing internal and external reliability. W refers to the extent to which other researchers, given a set of previously generated data, would reach the same conclusions as the original researcher. Grounded Theory's use of the researcher as an instrument would be an influence to the internal reliability of the study; The life experience and educational background of the researcher would be factors influencing the perception and interpretation of the data. 35 Ennsnnsl_gsllsnlll§y is defined by LeCompte and Goetz (1982) as, . . . the issue of whether independent researchers would discover the same phenomena or generate the same constructs in the same or similar setting. Because this research has not been conducted before it is impossible to determine the reliability of this study. The reliability’ will be. determined. once the study' has been replicated, and will not be addressed in this paper. Many factors influence the external reliability of the research including: setting, subjects, instrument, translator, pilot study, data collection and analysis, the changing nature of human behavior, and the relationship of the researcher to the study subjects. Any attempt to replicate this study must control all of these factors as variables. The following is a description of the variables as they apply to this research study. The Setting The study was conducted in.the service area of the Sparta Migrant Clinic, Sparta, Michigan. Sparta is located in western Michigan approximately fifteen miles northwest of Grand Rapids. The area surrounding Sparta is a rural farming area whose major products are cultivated and harvested by Hispanic migrant farmworkers. During the growing season there is large influx of migrant farmworkers into the area. According to Steve Smith, Director of the Sparta Health Center, (personal communication May 1, 1990) approximately 36 6,500 migrant farmworkers reside in the service area during the growing season. The service area of Sparta Health Center encompasses a twenty-five mile radius surrounding Sparta, Michigan. The migrant farmworkers that come to western Michigan.and are served by the Sparta.Health Center, generally come from south Texas and Florida. Most of these migrant farmworkers are Hispanic and travel in family units. Once in Michigan these farmworkers generally reside in housing provided by the grower, called migrant camps” These camps are usually located near the fields or orchards in which the migrant farmworkers work. Migrant camps are clusters of one and two room cabins, cinder block construction "motel units", or older mobile homes with outdoor plumbing, community showers and a laundry facilityu Most.migrant camps are a mixture of the old and new housing units which are constantly being updated and repaired, by the grower. The size of the camps is measured by the number of workers, which may vary from less than four to over two hundred. The size does not include the unemployed adults and children who reside in the camp. Many of the migrant farmworkers in Michigan follow the same migration route returning to the same grower's camp annually. Subjects Eight subjects were included in the study. Grounded Theory suggests a theoretical sampling of subjects within an identified population. Glaser (1978) describes theoretical 37 sampling as, . . . the process of data collection for generating theory whereby the analyst jointly collects, codes and analyzes his data and decides what data to collect next and where to find them, in order to develop his theory as it emerges. This process of data collection is controlled by the emerging theory, . . . (p. 36). The initial criteria for subject.selectionnwas identified during the ‘proposal phase of the study; However, the selection of additional subjects during the actual research was determined by the developing trends which evolved during the data collection and analysis. The subjects interviewed for this study were selected from Hispanic farmworkers families who resided in the service area of the Sparta.Higrant Clinic, were known to the researcher, and were willing to participate in the study. As a pilot study two subjects were identified and interviewed with a translator. The data from these pilot interview was transcribed and analyzed. The consent forms and the interview procedure were reviewed. No changes in the consent form or the interview process were needed before starting the research study. Once the pilot study' was completed two additional subjects were identified and interviewed. As the interviews progressed, additional criteria for inclusion in the study became evident from the data analysis. Subsequent to the data analysis the subjects were identified in pairs, i.e. a young woman and either her mother or her mother-in-law. Three subject pairs were identified and interviewed as a part of the study. One subject pair consisted of a woman and her mother. 38 The other two pairs consisted of a woman and her mother-in- law. One of these young women was pregnant with her first child. This subject did not fit any of the existing categories but her inclusion into the study allowed insight as to the perceptions of a young woman who was raised in the United States and who has not yet been socialized as a mother. As the data analysis progressed the data from the pilot study was included in the final analysis. It was felt by this researcher that the data collected during the pilot study did not differ from the data collected during the rest of the research project either in procedure or quality of data obtained. The two women interviewed during the pilot study did not have a mother or mother-in-law residing in Michigan during the period of the study, therefore data could not be obtained from these mothers or mothers-in-law for inclusion in the study. The Protection of Human Subjects The proposed research was presented and approved by the University Committee on Research Involving Human Subjects. A copy of the letter of approval appears in Appendix A. After the subject was identified from the Hispanic migrant farmworker population based on the criteria for selection, she was approached by the researcher and the translator and asked to participate in the study. A discussion of the role of the translator appears later in the chapter. After the subject verbally agreed to participate a 39 written consent was read, by the translator in Spanish, or by the researcher in English if the interviews were to be conducted in English. The written consent outlined the interview procedure, and described the purpose of the research study and assured confidentiality of information gathered. A copy of the consent forms used in both Spanish and English is included in Appendix B. The researcher answered any questions the subject had concerning the research, through the translator as necessary. The subjects were assured that any comments they made would not be identified with them directly and would be kept strictly confidential. The subjects were then informed that they could stop the interview process at any time. The reading of the consent form and the subject's response were recorded on audiotape. These audiotapes are being kept on file by the researcher. In addition, the consent form was signed by the subject, the researcher, and the translator as needed. The subjects were asked if they wished to have the research study explained to their husband or family. As described by Ehling (1981), it is not uncommon in the Hispanic migrant community for the male head of the household to make decisions as to the activities of the women in the home. Once permission is obtained it is unlikely that the head of the household would wish to be present during the interviews as the topic center around child care. No subject requested an explanation of the research study be given to their husband or other family members, by the researcher. 4O Instrument The focus of qualitative research relies on the use of the researcher as the instrument. Field and Morse (1985) recognized that, in qualitative research the amount and quality of the data and the depth of the analysis are dependent upon the ability of the researcher (p. 115). This study utilized several means of enhancing the ability of the researcher to collect and analyze data within the scope of Grounded Theory Methods. The interview guide was developed by the researcher and was based on information gained from the literature on caida de mollera. The interview guide consisted of three parts. The first part allowed the collection of demographic data which was used.t0x<2am Q8382 Q0282 5o <