Submitted for the partial fulfilment of the requirements for the degree. Master of Arts in Social Work (with specialization field Medical Social Work)

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THE PSYCHO-SOCIAL EFFECTS OF INFERTILITY ON A COUPLE: A MEDICAL SOCIAL WORK PERSPECTIVE by CHARLENE LAURENCE Submitted for the partial fulfilment of the requirements for the degree Master of Arts in Social Work (with specialization field Medical Social Work) M.A. ( SW)MSW in the FACULTY OF ARTS DEPARTMENT OF SOCIAL WORK of the UNIVERSITY OF PRETORIA Promoter: Prof. Dr. M.S.E. du Preez PRETORIA OCTOBER 1989

ACKNOWLEDGEMENTS I would like to express my sincere gratitude to: My Creator, Lord and Saviour for granting me the ability, courage and guidance to complete my post-graduate studies. My promoter, Prof. Dr. M.S.E. du Preez for her expertise, thorough guidance and continuous support. The Embassy of the United States of America, for granting me a Fulbright Scholarship to complete a Master of Social Work degree at the George Warren Brown School of Social Work, at Washington University, United States of America in 1987. This opportunity enabled me to gain extensive experience and broadened my knowledge and research in the field of infertility. This was made possible by working for a year as a medical social worker at the Infertility Unit of the Jewish Hospital at Washington University Medical Centre, St. Louis, with renowned infertility specialists dr. Ronald Strickler and mrs. Sima Needleman. Their worthy publications have also been utilized in this study. The superintendent of the H. F. Verwoerd Hospital and the Dean of the Medical Faculty of the University of Pretoria for granting me permission to undertake this research at the Infertility Clinic of the H.F. Verwoerd Hospital. The 30 r_espondents who were willing to partake in this study despite the delicacy of the issue and the secrecy surrounding their infertility. Dr. Chris B. van 0. Sevenster of the Infertility Clinic at the H.F. Verwoerd Hospital, for his co-operation and interest in this study, as well as his willingness to verify the medical contents of this dissertation.

Dr. Danie du Toit of the Andrology Clinic, for checking the accuracy of the andrological contents of this dissertation. Mr. Chris Botha of the H. s. R. c. for his thorough guidance regarding the questionnaire. Prof. Dr. R. P. de la Rey, for his statistical computer analysis of the data. My brother-in-law, dr. Andrew Jarvis, for teaching me the Harvard Graphics computer program, and thereby enabling me to produce my own graphical representations for this dissertation which was an enriching and a rewarding experience. My sister Desiree Jarvis, and mrs. S.M. Hofmeyr for their thorough grammatical editing of this dissertation. Mrs. Marie Lues, for her neat and devoted typing of the disseration on the word processor, as well as her continuous support. My parents, for enabling and always encouraging me to further my studies and for their constant love and concern throughout my studies. My husband Giuseppe for all his love, patience, toleration and encouragement throughout my studies, as well as his willingness to take over some of the household tasks, thereby enabling me to complete my dissertation. Thank you all CHARLENE LAURENCE OCTOBER 1989

Dedicated to my parents, Cecil and Louise Laurence and my husband, Giuseppe Carbonatto

SUMMARY THE PSYCHO-SOCIAL EFFECTS OF INFERTILITY ON A COUPLE: A MEDICAL SOCIAL WORK PERSPECTIVE Candidate : Department: Promoter : Degree : Charlene Laurence Social Work, University of Pretoria Prof. Dr. M.S.E. du Preez M.A.(SW) Medical Social Work. This research is aimed at studying and describing the psychosocial effects of infertility on couples. Infertility is a reasonably new field of specialization in Medical Social Work, with a limited amount of research findings and literature available. A definite need for research therefore exists in this field. The stages and procedures of research used in this study are firstly described, as well as the problems experienced with the study and definitions of terms used. Subsequently, infertility is described in detail to provide the necessary knowledge of and insight into the problem and also to understand what infertile couples have to endure during the whole treatment period. This includes the initial interview, the medical investigations, the causes of infertility, the treatment procedures av.ailable and the psycho-social effects of infertility. The roles, tasks, skills and knowledge of the medical social worker in a multi-professional health setting are described next, followed by a guideline for medical social workers as regards the infertile couple at an Infertility Clinic. This guideline describes the roles and tasks of the medical social worker regarding each step of the entire infertility treatment plan.

Hereafter the research findings and graphical representations of this exploratory and descriptive study of the psycho-social effects of infertility on couples, are presented and discussed. The hypothesis for this study: "Infertility has various psychosocial effects on a couple" is accordingly supported. Finally the general summary, arising from this study are provided. conclusions and recommendations

OPSOMMING DIE PSIGO-SOSIALE EFFEK VAN INFERTILITEIT OP 'N EGPAAR: 'N GENEESKUNDIGE MAATSKAPLIKEWERK-PERSPEKTIEF Kandidaat : Departement: Promotor : Graad : Charlene Laurence Maatskaplike Werk, Universiteit van Pretoria Prof. dr. M.S.E. du Preez M.A.(MW) Geneeskundige Maatskaplike Werk Die doel van hierdie navorsing was om die psigo-sosiale uitwerking van infertiliteit op 'n egpaar te bestudeer en te beskryf. Die veld van infertiliteit is 'n betreklik nuwe spesialiteitsterrein in Geneeskundige Maatskaplike Werk, met beperkte beskikbare navorsingsbevindinge en ontoereikende literatuur. Die stappe en prosedures van navorsing wat in hierdie studie gevolg is, word eerstens bespreek, gevolg deur 'n beskrywing van die probleme wat ervaar is, asook die definisies van die terme wat gebruik is. Vervolgens, word infertiliteit breedvoerig bespreek, om sodoende die nodige kennis en insig met betrekking tot infertiliteit te voorsien, asook begrip van wat die infertiele egpaar gedurende die volkome behandelingsperiode moet deurmaak. Dit sluit die aanvanklike onderhoud, die mediese ondersoeke, die oorsake van infertili tei "t:, die beskikbare behandelingsprosedures, asook die psigo-sosiale uitwerking van infertiliteit in. Die rolle, take, vaardighede en kennis van die geneeskundige maatskaplike werker in 'n mul ti-professionele gesondheidsopset word hierna bespreek, gevolg deur 'n riglyn vir die geneeskundige maatskaplike werker tydens elke stap van die algehele behandelingsprogram.

In opvolging hiervan word die navorsingsbevindinge en grafiese voorstelle van hierdie verkennende en beskrywende studie oor die psigo-sosiale uitwerking van infertiliteit op die egpaar, bespreek. Die hipotese vir hierdie studie: "Infertili tei t bet verskeie psigo-sosiale uitwerkings op 'n egpaar", word ooreenkomstig ondersteun. Laastens word die algemene opsomming, gevolgtrekkings en aanbevelings vanuit hierdie studie gebied.

i CONTENTS PAGE NO. ACKNOWLEDGEMENTS SUMMARY OPSOMMING CONTENTS... LIST OF FIGURES:... Bar charts Pie charts Stacked bar charts Tables.... CHAPTER 1: GENERAL INTRODUCTION... 1.1 INTRODUCTION... 1.2 STAGES OF RESEARCH... 1.2.1 1.2.2 1.2.3 1.2.4 1.2.4.1 1.2.4.2 Identifying a need for research Literature study...... Interviews with specialists Formulating the problem Aim of the Hypothesis study i vi vi vi vii vii 1 1 1 1 2 3 3 4 4 1.2.5 1.2.6 The The research design research procedure 4 5 1.2.6.1 1.2.6.2 1.2.6.3 1.2.7 1.2.7.1 1.2.7.2 1.2.7.3 1.2.7.4 1.2.7.5 1.2.8 The The The Questionnaire pre-test... interview The research group Geographical area... Home language....... Age.... Qualifications Occupation Data reduction, analysis, interpretation and presentation......... 5 6 6 7 8 8 9 10 11 12 1.3 PROBLEMS EXPERIENCED WITH THE STUDY 1.4 DEFINITIONS OF TERMS USED 12 14

ii 1.4.1 1.4.2 1.4.3 1.4.4 1.4.5 1.4.6 Couple......... Infertility......... Infertility clinic...... Medical Social Work....... Psycho-social effect......... Respondents............. PAGE NO. 14 15 15 15 16 16 1.5 DIVISION OF THE DISSERTATION 16 CHAPTER 2: INFERTILITY 2.1 2.2 2.2.1 2.2.2 INTRODUCTION DEFINITIONS... Infertility............. Medical terms......... 2.3 THE INITIAL INTERVIEW... 2.4 MEDICAL INVESTIGATIONS... 2.4.1 2.4.2 Female investigations.... Male investigations.... 2.5 CAUSES OF INFERTILITY 18 18 18 20 32 33 34 35 37 2.5.1 2.5.1.1 2.5.1.2 2.5.1.3 2.5.1.4 2.5.1.5 2.5.1.6 2.5.1.7 2.5.1.8 Female factors......... Tubal factors..... ovulation disorders......... Cervical factors.... Uterine factors......... Endometriosis...... Vulva and vaginal causes.... Thyroid gland and/or hormonal disturbances... Antisperm antibodies.... 37 37 38 39 39 39 39 40 40 2.5.2 2.5.2.1 2.5.2.2 2.5.2.3 2.5.2.4 2.5.3 2.5.4 2.5.5 Male factors.... Abnormal semen production.... Obstruction in sperm transportation.... Impotence or erectile disturbances.... Ejaculatory incompetence or failure to ejacu- late...................................... 43 Combined factors...... Psychogenic infertility.... Idiopathic infertility.... 2.6 INFERTILITY TREATMENT... 2.6.1 2.6.2 Ovulation induction.... 46 Artificial Insemination with husband's semen ( AI H )........................................ 46 40 40 41 42 44 44 45 46

iii 2.6.3 2.6.4 2.6.5 2.6.6 In-vitro Fertilization (IVF)...... Gamete Intra Fallopian Transfer (GIFT).... Artificial Insemination with donor semen (AID) In-vitro Fertilization with donor semen PAGE NO. (Donor-IVF)................................. 50 2.6.7 Gamete Intra Fallopian Transfer with donor semen (Donor-GIFT).......... 50 47 49 50 2.7 THE PSYCHO-SOCIAL EFFECTS OF INFERTILITY 50 2.7.1 2.7.1.1 2.7.1.2 2.7.1.3 2.7.2 2.7.3 2.7.4 2.7.5 Emotional reactions resulting from infertility Pre-diagnostic emotional reactions.... Post-diagnostic emotional crisis..... Emotional stages and the resolution period... The psycho-social effect of infertility treatment on couples.............. The psycho-social effect of infertility on the individual...... The psycho-social effect of infertility on the marital relationship...... The psycho-social effect of infertility on the relationships with significant other.... 51 51 53 54 58 60 61 63 2.8 SUMMARY 64 CHAPTER 3 : THE ROLES AND TASKS OF THE MEDICAL SOCIAL WORKER REGARDING THE INFERTILE COUPLE...... 68 3.1 3.2 INTRODUCTION DEFINITION... 3.3 THE AIM OF MEDICAL SOCIAL WORK 3.4 THE MULTI-PROFESSIONAL TEAM APPROACH 68 68 69 70 3. 5 THE ROLES, TASKS, SKILLS AND KNOWLEDGE OF THE ME- DI CAL SOCIAL WORKER.............................. 71 3.5.1 The roles and tasks of the medical social worker...................................... 71 3.5.2 The skills and knowledge of the medical social worker...................................... 76 3.6 A GUIDELINE FOR THE MEDICAL SOCIAL WORKER REGARDING INFERTILE COUPLES AT AN INFERTILITY CLINIC....... 79 3.6.1 Initial screening and psycho-social assessment 79 3.6.2 Preparation of couples for the medical investitations..................................... 81 3.6.3 3.6.4 Supportive counselling during the medical investigations....... Post-diagnostic crisis intervention.... 81 82

iv PAGE NO. 3.6.5 Preparation of couples for the infertility treatment procedure..... 3.6.6 Supportive counselling during the infertility treatment procedure............ 3.6.7 Post-treatment counselling......... 3.7 SUMMARY... 83 83 84 86 CHAPTER 4: 4.1 4.2 INTRODUCTION HYPOTHESIS RESEARCH FINDINGS...... 4.3 DISCUSSION AND REPRESENTATION OF RESEARCH FINDINGS. 89 88 88 88 4.3.1 4.3.2 4.3.3 4.3.4 4.3.5 4.3.6 4.3.7 4.3.8 4.3.9 4.3.10 4.3.11 4.3.12 4.3.13 4.3.14 4.3.15 Duration of marriage............ Duration of infertility...... Infertility diagnosis........ Marital and childbearing history...... The emotional reactions resulting from the infertility diagnosis.... Thoughts of infertility.... The need to discuss infertility with someone. People with whom infertility was discussed... Responses to the infertility........ Feelings experienced as a result of infertili ty................. Blame for infertility......... Effect of infertility on the individual.... Effect of infertility on the marriage.... Meaning in life................. Adoption as an alternative to AID...... 89 90 91 92 92 95 96 97 101 103 107 109 112 115 116 4.4 TESTING OF THE HYPOTHESIS 4.5 SUMMARY... 118 119 CHAPTER 5: GENERAL SUMMARY, CONCLUSIONS AND RECOMMEN- DATIONS 122 5.1 INTRODUCTION... 122 5.2 GENERAL SUMMARY, CONCLUSIONS AND RECOMMENDATIONS 123 5.2.1 Infertility investigations and treatment... 123 5.2.1.1 5.2.1.2 5.2.1.3 5.2.2. 5.2.2.1 5.2.2.2 General Swmnary.... Conclusion.... Recommendation.......... The psycho-social effects of infertility... General Swmnary...... Conclusions...... 123 123 123 123 123 125

v 5.2.2.3 5.2.3 5.2.3.1 5.2.3.2 5.2.3.3 Recornrnenda tion.... The roles, tasks, skills and knowledge of the medical social worker regarding the infertile couple and clinic........... General Sununary.... Conclusions............. Recornrnenda tions.......... PAGE NO. 125 126 126 127 127 5. 3 CONCLUDING REMARK 128 BIBLIOORA.PHY: 12 9 Books..................... 129 Journal articles......................... 132 Dictionaries........................................ 13 4 Encyc 1 opedi as....................................... 13 4 Interviews........................................ 134 Study Guides........................................ 135 Symposiums/Seminars/Workshops... 135 APPENDIX 1: QUESTIONNAIRE - H.F. VERWOERD HOSPITAL - INFERTILITY CLINIC... 136

vi LIST OF FIGURES PAGE NO. BAR CHARTS CHAPTER 4: Bar chart 1: The emotional reactions of male respondents 93 Bar chart 2: Emotional reactions of female respondents. 94 Bar chart 3: Bar chart 4: With whom male respondents discussed their infertility problem... 97 With whom the female respondents discussed their infertility problem... 99 Bar chart 5: Responses of people to male respondents 101 Bar chart 6: Bar chart 7: Bar chart 8: Bar chart 9: Responses of people to female respondents.................................... 102 The feelings experienced by male respondents as a result of their infertility... 104 The feelings experienced by female respondents as a result of their infertility... 105 Whom the male respondents blame for their infertility............................ 107 Bar chart 10: Whom the female respondents blame for their infertility.............................. 108 Bar chart 11: Various aspects of the male self affected by infertility............................ 109 Bar chart 12: Various aspects of the female self affected by infertility.... 111 Bar chart 13: The effect of infertility on the marriage as reported by the male respondents... 113 Bar chart 14: The effect of infertility on the marriage as reported by the female respondents... 114 PIE CHARTS CHAPTER 1: Pie chart 1 : Age..................................... 9 Pie chart 2: Qualifications... 10 Pie chart 3: Occupation... 11

vii PAGE NO. PIE CHARTS (CONTINUED) CHAPTER 4: Pie chart 4: Duration of marriage 89 Pie chart 5: Duration of infertility... 90 Pie chart 6: Infertility diagnosis........... 91 Pie chart 7: The occurrence of male and female thoughts of infertility... 95 STACKED BAR CHARTS CHAPTER 4: Stacked bar chart 1: Stacked bar chart 2: Stacked bar chart 3: Need to discuss infertility with someone 96 Meaning in life as experienced by males and females...... 116 Male and female reasons for not choosing adoption as an alternative............................ 117 TABLES CHAPTER 4: Table 1: The difference between feelings experienced by males and females as a result of the infertility........................................ 106