Portland State University PDXScholar Dissertations and Theses Dissertations and Theses 1973 Sickle Cell Anemia : a Psychosocial Study of Attitudes and Effect Sharon Ann Goddard Portland State University Marian Genita Gilmore Portland State University Let us know how access to this document benefits you. Follow this and additional works at:http://pdxscholar.library.pdx.edu/open_access_etds Part of theSocial Work Commons Recommended Citation Goddard, Sharon Ann and Gilmore, Marian Genita, "Sickle Cell Anemia : a Psychosocial Study of Attitudes and Effect" (1973). Dissertations and Theses.Paper 2055. 10.15760/etd.2054 This Thesis is brought to you for free and open access. It has been accepted for inclusion in Dissertations and Theses by an authorized administrator of PDXScholar. For more information, please [email protected]. AN ABSTRACT OF THE THESIS OF Marian G. Gilmore and Sharon A. Goddard for the Masters Degree of Social Work 'presented May 18, 1973. Title: Sickle Cell Anemia: A Psychosocial Study of Attitudes and Effect. APPROVED BY MEMBERS OF THE THESIS COMMITTEE: Jiiclt C. Fin11E~Y ..... j,;'/'" / This research study was focused on two broad of a~eas' exploration. The first area deals with the identification, of various factors affecting a family when a family member has the anem'ia or symptomatic form of sickle cell disease. Data obtained from a personally administered questlonn~lre (Form A), enabled the researchers to determine if genet'ic counseling had been offered and received, and if this counseling was considered helpful by the respondents. In addition to this, data was collected on several demographic variables, including sex and age of patient, family income, ... 2 religion, education, ethnic group, living arrangement.s and occupation, and response to and knowledge of sickle cell' anemia. The second broad area of exploration inves"tigated the awareness and general knowledge of ,sickle cell disease among a quota non-probability sampling of a selected popula­ tion in Portland, Oregon. The sample ,was composed of ninety-nine forty-five blacks and forty-seven respondent~, whites. was collected by personal contact ~nformation through a questionnaire (Form B) to determine if there was any difference between black and white attitudes and knowl­ edge concerning sickle cell anemia. Data analysis indicates that t1:).er..e is no statistically signif1cant difference between black and white respondents to' 'Questlonnaire Form B. Responses tended to be uniformly similar concerning both awareness of and attitudes toward s"lckle ce'l1 anemia. Limitations of the study must be considered as fol-' lows: (.1) the number of respondents to Questionnaire Form A was limited since only five families were available for participation in the study; (2) data collection . w~s based on subjective recall without further, investigation into the accuracy of the reports; (3) a non-probability sampling for Form B creates the risk of Questionnai~e 3 obtaining a biased sample, and (4) the study did not deal with the effects of demographic variables. SICKLE CELL ANEMIA: A PSYCHOSOCIAL STUDY OF ATTITUDES AND EFFECT by Marian G. Gilmore and Sharon A. Goddard A thesis submitted in partial fulfillment of the requirements for the degree of . MASTER OF SOCIAL WORK ,Portland State University 1973 " TO THE OFFICE OF GRADUATE STUDtES: The members of the committee approve the thesis of / Marian Genita Gilmore and Sharon Ann Goddard presented May 18, 1973. vI" APPROVED Gordon vean M~rn, 0 D StudIes May 18, 1973 ACKNOWLEDGMENTS Special acknowledgment and thanks are extended to Jack Finley and Robert Bigley who acted as advisors to this undertaking. Their help and support are deeply appre­ ciated. We are also grateful for the time and expertise of Dr. Dean Clarkson who consulted with us on this project. Further acknowledgment is extended to Sandra Ford for her extra effort in helping us make'contact with target families. And finally, thanks are extended to De·bra spec~a1 and Oneita Ballard, and Skip Goddard for their continued support and unfaltering faith, and to David Knott for his tolerant encouragement, understanding and invaluable technical advice. TABLE OF CONTENTS PAGE ACKNOWLEDGMENTS ili LIST OF TABLES vl • LIST OF FIGURES • viii • CHAPTER I. INTRODUCTION · '. · • · · · • · • 1 Areas of Focus • · · · · · · · · • · · · · 1 SICKLE CELL ANEMIA · · · · · · · • • • • 3 · · · · An~Introduction • • • 3 \. Clinical Manifestations · · 4 II Sickle Cell Trait · · · · · · · 6 " • • • ~ . . . I' 'Etiology • , · · · · · · • • • II · · · 7 . . . Tr~atment · · · • · · · · · · · 9 ,~ II. REVIEW OF THE LITERATURE • · · • · · · · · · 10 Sickle Cell Disease · • · · • • · · · · · • · 11 Genetic Counseling and Fatal and Chronic Disease 18 • • On Sickle Cell Anemia and Race • 23 III. METHODOLOGY • • • • • 27 Description of Samples • 27 • of Description Research Procedures • • 30 Method of Statistical Analysis 34 v CHAPTER PAGE FINDINGS AND RESULTS IV~ • • • 35 Introduction • • • • • • • • • • • • • • 35 Families Experiencing S1ckle Cell Anem1a • • 35 Questionnaire Form A 35 • General Knowledge and Awareness of Sickle Cell Disease ••• • . • • • • • • • • . •• 54 Questionnaire Form B • • • 54 V. DISCUSSION OF RESULTS . . • 71, Questionnaire Form A 71 Questionnaire Form B • .. 73 Limitations . • • 74 • Conclusions and Recommenda·tiona 75 Imp11cations for Further Research 76 BIBLIOGRAPHY • • . •• ..•••. • 77 .. APPENDICES 84 A. 'INTRODUCTORY LETTER 85 B. QUESTIONNAIRE FORM A 87 • • C. QUESTIONNAIRE FORM B 94 LIST OF TABLES TABLE , PAGE I. INCIDENCE OF SICKLE CELL DISEASE • 28 • II. AGE AND SEX DISTRIBUTION OF SICKLE CELL, PATIENTS 36 III. ADDITIONAL FAMILY MEMBERS DIAGNOSED WITH ., SICKLE CELL DISEASE ,-. . • • • • 36 IV.' EDUCATIONAL STATUS OF PATIENTS". 37 • V • LIVING ARRANGEMENTS OF PATIENTS 39 VI. DISTRIBUTION BY PARENTS' AGE ••• '39 VII. DISTRIBUTION BY PARENTS' EDUCATION" •• 40 VIII. INCOME DISTRIBUTION ltO /' • ,IX. SYMPTOMATOLOGY MANIFESTED BY PATIENTS 41) ~ X. PASSAGE OF TIME BETWEEN SYMPTOMATIC DISEASE, DIAGNOSIS WITH SICKLE CELL ANEMIA 'AND AGE AT WHICH PATIENT WAS TOLP OF HIS ILLNESS •• 43 XI. DISTRIBUTION ON UNDERSTANDING OF SICKLE CELL ANEMIA 46 • XII. DISTRIBUTION OF OPINIONS ON RELATED ISSUES • • 48 ., XIII. DISTRIBUTION BY ETHNIC GROUP AND SEX '. 54 XIV. FREQUENCY AND DISTRIBUTION BY 'MARITAL STATUS • 55 XV. FREQUENCY AND DISTRIBUTION BY EDUCATION 56