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The childbearing experience for women with stomas : A multiple-case study Hawkins, Margery Edith 1995

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THE CHILDBEARING EXPERIENCE FOR WOMEN WITH STOMAS A MULTIPLE-CASE STUDY by MARGERY EDITH HAWKINS B.Sc.N., University of B r i t i s h Columbia, 1973 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s thesis as conforming to the required standard THE^UNIVERSITY OF BRITISH COLUMBIA May 1995 © Margery Edith Hawkins, 1995 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission . for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of School o~P Nurs'tn The University of British Columbia Vancouver, Canada DE-6 (2/88) 1 1 ABSTRACT Although much research has been done on the d a i l y challenges facing individuals with stomas, the experience of childbearing for women with stomas has not been addressed i n the nursing l i t e r a t u r e . The research question put forth therefore was: how does a stoma a f f e c t the childbearing experience? Case study methodology was used to answer t h i s question. This design allowed the researcher to use a var i e t y of evidence to explore i n depth a subject about which l i t t l e i s known. Six cases were selected for the study and data c o l l e c t i o n and analysis procedures were re p l i c a t e d for each case. An informal interview guide consisting of open and closed-ended questions was used to s o l i c i t information from six women with stomas who had experienced c h i l d b i r t h i n the past eighteen months, t h e i r respective partners, and the physicians who provided t h e i r o b s t e t r i c a l care. Data were analyzed according to the major concepts of Snyder's (1979) h o l i s t i c model of the childbearing experience and findings were presented i n six individual case reports. Common issues were i d e n t i f i e d , expanded, and compared i n a cross-case report. I l l In each case, the stoma affected the woman's phy s i o l o g i c a l , s e l f , family, s o c i a l , and c u l t u r a l systems and these interacted to create six unique childbearing experiences. Although a l l the women delivered healthy babies, two serious p h y s i o l o g i c a l implications of having a stoma during pregnancy were noted. These included 2 cases of stomal prolapse and 3 cases of p a r t i a l or complete bowel obstruction. Both complications necessitated h o s p i t a l i z a t i o n and caused anxiety and inconvenience for the woman and her family. However, the findings revealed that many of the tech n i c a l , psychosocial, and c u l t u r a l challenges faced by women with stomas during pregnancy are s i m i l a r to those experienced on a d a i l y basis by any in d i v i d u a l with a stoma. It was concluded that women with stomas need pre-natal counselling to learn what to anti c i p a t e with pregnancy, labour and delivery, and postpartum and they need to pa r t i c i p a t e in formulating a management plan for t h e i r pregnancy and h o s p i t a l i z a t i o n . F i n a l l y , basic and continuing nursing education programs need to address the af f e c t i v e , cognitive, and psychomotor s k i l l s necessary to care for these individuals during t h e i r childbearing experiences. i v TABLE OF CONTENTS Page Abstract i i Table of Contents i v L i s t of Figures v i i Acknowledgements v i i i CHAPTER ONE: Introduction 1 Background to the Problem 1 Statement of the Problem 2 Purpose of the Study and Research Question 3 Conceptual Framework 3 D e f i n i t i o n of Terms 8 Assumptions 9 Limitations 9 Research Method 9 Significance of the Study 10 S c i e n t i f i c Significance 10 P r a c t i c a l Significance 11 Organization of the Thesis 11 Summary 12 CHAPTER TWO: Literature Review 13 Introduction 13 The Presence of Stomas i n Women of Childbearing Age 14 The Impact of Living with a Stoma 18 Stomas and Pregnancy: Medical Reports 24 Stomas and Pregnancy: Anecdotal Accounts 37 Pregnancy and Chronic I l l n e s s 40 Summary 4 4 CHAPTER THREE: Methodology 45 Introduction 45 Research Design 45 Selection of the Participants 47 C r i t e r i a f or Selection 48 Selection Procedures 49 Characteristics of the Participants 50 E t h i c a l Considerations 50 Data C o l l e c t i o n 51 V Data Analysis 54 R e l i a b i l i t y and V a l i d i t y 55 Summary 58 CHAPTER FOUR: Findings of the Study 59 Introduction 59 Individual Reports 59 Case Report 1 59 Case Report 2 64 Case Report 3 67 Case Report 4 7 0 Case Report 5 74 Case Report 6 78 Summary of Individual Reports 81 Cross-Case Report 81 Physiological System 82 Self System 89 Family System 95 Social System 100 Cultural System 109 Summary of Cross-Case Report 110 Summary of Findings 111 CHAPTER FIVE: Discussion, Conclusion, Implications, and Summary 113 Introduction 113 Discussion 113 Physiological System 113 Self System 118 Family System 120 Social System 121 Cultural System 126 Summary of Discussion 127 Conclusions 129 Implications 13 0 Implications for Nursing Practice 13 0 Implications for Nursing Education 131 Implications for Nursing Research 132 Summary 132 REFERENCES 136 APPENDICES 140 Appendix A: Introductory Letter to Individuals Recruiting Participants 140 Appendix B: Information Letter to v i Prospective Participants 141 Appendix C: Information Letter to P a r t i c i p a t i n g Physicians 142 Appendix D: Woman's Consent Form 144 Appendix E: Partner's Consent Form 146 Appendix F: Release of Information Form 147 Appendix G: Interview Guide 148 Appendix H: Questionnnaire for Physicians 151 Appendix I: Data Analysis Matrix 152 LIST OF FIGURES Figure 1 A H o l i s t i c Model of the Childbearing Experience. Figure 2 The Trajectory of Childbearing. v i i i ACKNOWLEDGEMENTS I would l i k e to acknowledge and thank the s i x women and t h e i r respective partners and physicians who par t i c i p a t e d i n t h i s study. Their willingness to share t h e i r experiences i s appreciated. I would also l i k e to acknowledge and thank the members of my thesis committee, Professors Elaine Carty, A l i s o n Rice, and Sa l l y Thorne, for t h e i r commitment and expert guidance throughout the study. I would also l i k e to express my gratitude to the individuals who assisted with the recruitment of the participants for the study: Sherri Carson, Beverly Ewoniak, Sharon Fabbi, and Andrea Wager. F i n a l l y , a special thanks to my husband, Robert, and my four children Jeffrey, Stephanie, Michael, and Daniel for t h e i r love, support, and patience. 1 CHAPTER ONE Introduction Background to the Problem A pregnant woman with a stoma simultaneously faces two p h y s i o l o g i c a l l y and psychosocially demanding challenges: the d a i l y concerns of a stoma and the developmental c r i s i s of a pregnancy. A stoma provides a permanent or temporary means of f e c a l or urinary diversion. I t requires i n d i v i d u a l s of a l l ages and with a variety of pathological conditions, including trauma, congenital anomalies, inflammatory diseases, and cancer to cope with ongoing physical and psychosocial issues. Although the highest incidence of ind i v i d u a l s with stomas occurs with older adults, where colonic cancer predominates, younger adults may also require the construction of a stoma, primarily due to Crohn's disease. Despite a number of anecdotal accounts i n the "s e l f - h e l p " l i t e r a t u r e , the childbearing experience for women with stomas has received very l i t t l e attention i n the health care l i t e r a t u r e . The nursing l i t e r a t u r e , while replete with a r t i c l e s about the impact of a stoma on d a i l y l i f e , does not s p e c i f i c a l l y address the impact 2 of a stoma on pregnancy. The medical l i t e r a t u r e , while addressing the medical considerations for pregnant women with stomas, only b r i e f l y mentions psychosocial implications. However, according to Rubin (1976), childbearing i s a multi-dimensional phenomenon and consideration should be given to psychological, s o c i a l , and c u l t u r a l factors as well as physiological ones. Although the incidence of pregnant women with stomas i s currently low, with approximately only eight such women reported i n the past two years i n the Lower Mainland, the Fraser Valley, and the Sunshine Peninsula of B r i t i s h Columbia, the incidence of Crohn's disease i s on the increase (Kirsner, 1985) and consequently one would anticipate an increase i n stomas i n women of childbearing age. Nurses need to know how to adapt t h e i r care to support these individuals during t h e i r childbearing experience. Therefore, an opportunity to investigate the experience should not be overlooked. Statement of the Problem Very l i t t l e i s known about the experience of childbearing for women with stomas and therefore a lack of theory exists on which to base e f f e c t i v e care planning. 3 Purpose of the Study and Research Question The purpose of t h i s study i s to document and analyze the experience of childbearing for women with stomas. The s p e c i f i c question to be answered i s : how does a stoma a f f e c t the experience of childbearing? Conceptual Framework Snyder (1979) describes a h o l i s t i c model to explore the complexities of the childbearing experience. In her model pregnancy i s depicted as a tr a j e c t o r y which begins at conception, ends with delivery, and has s p e c i f i c signs occurring at anticipated i n t e r v a l s (see Figure 1). This t r a j e c t o r y i s a perceived phenomenon with the involved i n d i v i d u a l s having t h e i r own perceptions about the course of the pregnancy. The perceptions may or may not be i n accord with r e a l i t y and are dependent on many factors, such as the l e v e l of knowledge and the past experiences of the perceivers. The perceptions are also major determinants of behaviour. A basic assumption underlying the model i s that the pregnant woman and those related to her perceive the childbearing experience as an uncomplicated event culminating i n a healthy mother and c h i l d . An. 4 Figure l . The Trajectory of Childbearing. Snyder, D.J. (1979). JOGN, 8 (3), 167. 5 a l t e r a t i o n i n the trajectory can therefore lead to confusion and f r u s t r a t i o n . The pregnant woman and a l l those p a r t i c i p a t i n g i n her childbearing experience must then reorganize t h e i r behaviour i n terms of an alte r e d t r a j e c t o r y . Along the trajectory factors r e l a t i n g to the physiology of pregnancy and to the s e l f , family and peer, s o c i e t a l , and c u l t u r a l systems intera c t to create a unique and h o l i s t i c experience for each i n d i v i d u a l woman. These factors are v i s u a l l y represented by a series of concentric c i r c l e s (see Figure 2). The phy s i o l o g i c a l pregnancy i s at the core of the model and represents the physiological adaptations to pregnancy. The woman's s e l f system, the next c i r c l e , symbolizes the woman's emotional adaptation to pregnancy and involves a process of incorporating the experience of pregnancy into her s e l f system. To do so, requires working through various developmental tasks such as accepting the r e a l i t y of her pregnancy; incorporating the growing fetus into her own body image; separating he r s e l f from her growing fetus; and f i n a l l y preparing to assume the maternal r o l e . The a b i l i t y to successfully work through these tasks and emotionally Figure 2. A H o l i s t i c Model of the Childbearing Experience. Snyder, D.J. (1979). JOGN, 8 (3), 165. 7 adapt to pregnancy w i l l be influenced by a multitude of factors s p e c i f i c to each individual experience (Rubin, 1976). The peer and family system, the next c i r c l e , depicts the network of s i g n i f i c a n t family members and friends involved with the childbearing experience. The structure and dynamics of these interpersonal r e l a t i o n s h i p s w i l l a f f e c t the childbearing experience and conversely the childbearing experience w i l l a f f e c t the r e l a t i o n s h i p s . The next c i r c l e i l l u s t r a t e s the s o c i a l system within which the childbearing experience occurs and includes such groups as the community where she l i v e s and the organizations where she receives care. A l l of these s o c i a l groups w i l l a f f e c t the childbearing experience. The outer c i r c l e of the model exemplifies the o v e r a l l c u l t u r a l system within which the other systems operate. Culture includes a l l of the attitudes and values related to childbearing. These values provide the framework for the i n d i v i d u a l woman and her family to define and evaluate t h e i r p a r t i c u l a r childbearing experience. A deviation at any l e v e l of the model can a l t e r the trajectory of the childbearing experience and conversely an a l t e r a t i o n at any point i n the t r a j e c t o r y can a f f e c t each layer of the model. 8 Although a l l the factors r e l a t i n g to each l e v e l of the model must be i d e n t i f i e d , Snyder (1979) contends that i t i s more important to consider them i n l i g h t of how they i n t e r a c t with each other rather than as separate e n t i t i e s . In t h i s way a comprehensive understanding of the childbearing experience as perceived by the woman may be achieved. This h o l i s t i c model of the childbearing experience was used to guide the observations and the analysis for the study. For the purposes of t h i s study, however, the family and peer system was adapted to address only issues pertaining to the family. The e f f e c t s of the stoma, therefore on the physiological pregnancy, on the s e l f system, on the family system, on the s o c i a l system, and on the c u l t u r a l system were i d e n t i f i e d and conclusions drawn regarding how these factors interacted and possibly altered the tr a j e c t o r y of childbearing. D e f i n i t i o n of Terms Childbearing experience: a multidimensional phenomenon, having a d e f i n i t e duration from conception to postpartum, and encompassing physiological, emotional, s o c i a l , and c u l t u r a l factors (Snyder, 1979). 9 Assumptions The study was based on the following assumptions: 1. Childbearing i s a unique and h o l i s t i c experience for each individual woman. 2. An indi v i d u a l with a stoma has an ongoing need for physiologic and psychosocial adaptation. Limitations The l i m i t a t i o n s of the study were as follows: 1. The women's perceptions of t h e i r childbearing experiences may have been limited by the time lag between the time of the experience and the time of the study. 2. The study may have been limited by the women's a b i l i t y and willingness to a r t i c u l a t e t h e i r true perceptions of t h e i r childbearing experiences. 3. The researcher i s a s p e c i a l i s t i n enterostomal therapy nursing but i s not an expert i n general research surrounding pregnancy and c h i l d b i r t h . Research Method Case study methodology as described by Robert K. Yin (1994) was selected for t h i s study. The unique feature of t h i s design i s i t s a b i l i t y to use a va r i e t y of evidence to investigate complex s o c i a l phenomena. 10 I t i s considered an appropriate design when the phenomenon or phenomena of interest i s rare, or c r i t i c a l , or revelatory i n nature. The case, or unit of analysis, may refer to an ind i v i d u a l , a group of ind i v i d u a l s , or an event. If the study i s concerned with one unit of analysis i t i s referred to as a single-case study and i f more than one such case i s included i n the study, i t i s referred to as a multiple-case design. This study u t i l i z e d a multiple-case design. Six in d i v i d u a l cases were explored, each case defined as the childbearing experience for a woman with a stoma. Very l i t t l e i s known about t h i s phenomenon and case study methodology enabled the researcher to examine data from a variety of sources, including the women who experienced c h i l d b i r t h , t h e i r partners, and t h e i r physicians. The data for each case were analyzed separately and the findings compared across cases. Significance of the Study S c i e n t i f i c Significance The study contributed to the knowledge about the complex phenomenon of childbearing for women with stomas. Physiological, psychological, s o c i a l , and 1 1 c u l t u r a l factors associated with t h i s phenomenon were i d e n t i f i e d and hence nursing knowledge advanced and suggestions for further related research founded. P r a c t i c a l Significance The findings w i l l a s s i s t health care professionals to care for pregnant women with stomas. They w i l l give the nurse d i r e c t i o n i n assessing the needs and caring for these women pre-natally, during labour and delivery, and postpartum. The findings w i l l also provide women with stomas, contemplating or experiencing pregnancy, with insight into t h e i r condition. Organization of the Thesis This chapter has introduced the study by describing the background to the study, the statement of the problem, the purpose of the study and the research question, the conceptual framework, the d e f i n i t i o n of terms, the assumptions, the l i m i t a t i o n s , the research methodology, and the sig n i f i c a n c e of the study. Chapter Two presents a review of the related l i t e r a t u r e . This review consists of both research and non-research based l i t e r a t u r e . Chapter Three describes the application of case study methodology used i n t h i s thesis. I t outlines the s e l e c t i o n of informants, e t h i c a l considerations, data c o l l e c t i o n and analysis, and r e l i a b i l i t y and v a l i d i t y . Chapter Four presents the findings i n the form of s i x i n d i v i d u a l case reports and a cross-case report. Chapter Five discusses the findings, draws conclusions, and describes implications for nursing practice, nursing education, and further research. Summary This study used a multiple-case study method to explore the complex phenomenon of c h i l d b i r t h for a woman with a stoma. Very l i t t l e i s known about t h i s phenomenon and the findings w i l l contribute to the advancement of nursing knowledge and a s s i s t health care professionals to plan e f f e c t i v e care strategies. 13 CHAPTER TWO Literature Review Introduction This chapter reviews the research and non-research-based l i t e r a t u r e pertinent to the experience of childbearing for women with stomas. Very l i t t l e i s known about the childbearing experience for a woman with a stoma. The medical l i t e r a t u r e , while addressing the medical considerations for a pregnant woman with a stoma, does not address the psychosocial implications. However, a review of t h i s l i t e r a t u r e w i l l ascertain what i s already known about the problem. The nursing l i t e r a t u r e , while addressing the physiologic and psychosocial needs of in d i v i d u a l s with stomas and the implications of chronic i l l n e s s on pregnancy, does not s p e c i f i c a l l y address the issue of childbearing for women with stomas. A review of these two bodies of knowledge may provide further insight into the implications of a stoma on pregnancy. Non-research-based l i t e r a t u r e , on the other hand, contains a number of anecdotal accounts concerning pregnancy and stomas and a review of these a r t i c l e s may help to define issues related to the problem. 14 Selected areas for review w i l l , therefore, include: the presence of stomas i n women of childbearing age; the impact of l i v i n g with a stoma; stomas and pregnancy: medical reports and anecdotal accounts; and pregnancy and chronic i l l n e s s . The Presence of Stomas in Women of Childbearing Age Women of childbearing age may have urinary or f e c a l diversions for a variety of pathological conditions. A urinary diversion requiring a stoma i s most commonly indicated when the bladder must be removed due to disease or trauma. The most common urinary diversion under these circumstances i s the i l e a l conduit (Benson & Olsson, 1992). A segment of d i s t a l ileum i s resected with i t s mesentery i n t a c t , the proximal end closed, and the d i s t a l end brought to the abdominal wall as a stoma. The ureters are then anastomosed to the newly formed conduit. Since bladder cancer i s the usual indication for a urinary diversion, and i s generally a disease of people over the age of 50 (Catalona, 1987), i t i s not a l i k e l y i n d i c a t i o n for a stoma i n women of childbearing age. However, i n younger women, urinary diversions requiring a stoma are indicated for such conditions as bladder trauma, 15 congenital disorders, neurogenic bladder dysfunction, and inflammatory disorders. The most common fe c a l diversions are the colostomy and the ileostomy (McGarity, 1992). Colostomies are usually performed i n the caecum, transverse colon, l e f t colon, and sigmoid colon and ileostomies usually performed i n the terminal ileum (McGarity, 1992). Both colostomies and ileostomies may be either temporary or permanent i n nature with a temporary diversion performed as part of a staged procedure with a view to i t s ultimate closure. A permanent colostomy i s most frequently indicated when an in d i v i d u a l requires an abdominoperineal resection of the rectum for co l o r e c t a l cancer (Kodner, Fleshman, & Fry, 1989). However, the incidence of c o l o r e c t a l cancer does not r i s e s i g n i f i c a n t l y u n t i l the age of 40 to 45 which i s beyond the usual childbearing age (Haskell, Selch, & Ramming, 1990). A permanent ileostomy, on the other hand, i s most commonly constructed for Crohn's disease (McGarity, 1992), a chronic inflammatory bowel disease which has an incidence of 1 to 7 per 100,000 persons and a peak prevalence p r i o r to age 35 (Mendeloff, 1985). I f the 16 disease does not necessitate the removal of the e n t i r e colon, colostomies are constructed. Unfortunately, Crohn's disease can a f f e c t any part of the alimentary t r a c t from the mouth to the anus, and a bowel resection with ileostomy or colostomy may not be a cure (Janowitz et a l . , 1985). Other segments of the bowel may become active, including the ileostomy i t s e l f , and therefore surgery i s only performed i f medical management i s unsuccessful. U n t i l recently, t o t a l proctocolectomy with permanent ileostomy was standard surgical treatment for u l c e r a t i v e c o l i t i s , another inflammatory bowel disease with an incidence of 4 to 7 per 100,000 persons and a peak prevalence p r i o r to 35 years of age (Mendeloff, 1985). Unlike Crohn's disease, u l c e r a t i v e c o l i t i s i s confined to the mucosa of the rectum and colon and a t o t a l proctocolectomy i s considered a cure for the disease. Although proctocolectomies with permanent ileostomies are s t i l l performed, an ileoanal r e s e r v o i r , a continent diversion, i s currently being constructed i n most patients who have ulcerative c o l i t i s (McGarity, 1992) . The colon i s resected but the rectum and anal sphincter are preserved after stripping away the 17 mucosal l i n i n g . An internal ileoanal reservoir i s then constructed from a segment of d i s t a l ileum and anastomosed to the r e c t a l stump (Baba et a l . , 1985). Crohn's disease i s not considered a good i n d i c a t i o n f o r an i l e o a n a l reservoir since the disease may a f f l i c t the reser v o i r i t s e l f and require further bowel resection (Janowitz et a l . , 1985). Both Crohn's disease and ulcerative c o l i t i s share many c l i n i c a l and laboratory features, often making a d i f f e r e n t i a l diagnosis d i f f i c u l t (Kirsner, 1985). The incidence of Crohn's disease appears to be increasing, however, and that of ulcerative c o l i t i s remaining the same (Kirsner, 1985). Their etiology i s unclear but i t appears to be associated with multiple factors including d i e t , emotions, heredity, infections, and immunity, rather than a single cause (Kirsner, 1985). Although multiple occurrences of these diseases i n the same family have been documented, evidence supporting a r o l e for genetic factors i n the pathogenesis of the diseases i s incomplete (Kirsner, 1985). In summary, urinary diversions, although rare i n women of childbearing age, are indicated for such conditions as bladder cancer, neural i n j u r i e s , 18 congenital disorders, trauma to the bladder, and inflammatory disorders. Fecal diversions requiring permanent colostomies or ileostomies are more commonly seen i n women of childbearing age, with Crohn's disease currently being the usual indication. The Impact of Liv i n g with a Stoma Although the research-based l i t e r a t u r e does not s p e c i f i c a l l y address the psychosocial or c u l t u r a l implications of a stoma for pregnant women, i t does address the d a i l y challenges of l i v i n g with a stoma. A review of t h i s l i t e r a t u r e should provide insight into how a stoma a f f e c t s pregnancy. In a study to determine how individuals cope with a permanent ileostomy, Kelly (1991) interviewed a convenience sample of 45 individuals, 30 women and 15 men, each with a permanent ileostomy due to u l c e r a t i v e c o l i t i s . Twelve of these people had t h e i r operation within the twelve months p r i o r to the interview, another 20 had surgery between l and 5 years before the interview, and 13 had surgery more than 5 years before the interview. Using the psychology of coping theory developed by Lazarus as a basis, Kelly describes h i s findings i n 19 terms of a technical l e v e l , an intra-subjective l e v e l , an inter-personal l e v e l , and an inter-subjective l e v e l of coping. The f i r s t l e v e l of coping, the technical l e v e l , concerns the technical s k i l l s necessary to manage body waste. Ongoing technical problems c i t e d by the group included the continuous need to obtain, apply, and monitor stoma appliances, and the need for constant attention to prevent surgical and medical complications, such as food blockages and peristomal skin breakdown. The second l e v e l of coping, the intra-subjective l e v e l , concerns the emotional and a f f e c t i v e elements with which the person with an ileostomy has to contend. Although the strongest feelings of anxiety, anger, and depression were noted among persons with recently acquired ileostomies, a consistent undertone of unhappiness was noted among the group i n general. The author at t r i b u t e s the unhappiness to the fac t that the ileostomy i t s e l f was generally considered undesirable by the subjects and, despite t h e i r best e f f o r t s to lead an ordinary l i f e , i t might at any time thwart them. The t h i r d l e v e l of coping, the inter-personal 20 l e v e l , concerns s o c i a l interaction with others. The key issue i d e n t i f i e d by the group was how to construct a normal i d e n t i t y . This issue was dealt with i n a var i e t y of ways including putting the ileostomy into perspective and not defining i t as a major problem, engaging i n normal a c t i v i t i e s , and concealing the stoma. The fourth l e v e l of coping, the inter-subjective l e v e l , concerns the need to verbally make sense of what has happened. The author concludes that the subjects' explanations of how they cope with t h e i r ileostomies i s a coping method i n i t s own right as i t provides an opportunity to interpret t h e i r s i t u a t i o n . Although the problems i d e n t i f i e d by K e l l y (1991) pertain to coping with a permanent ileostomy, s i m i l a r problem areas have been i d e n t i f i e d i n studies pertaining to stomas i n general. F o l l i c k , Smith, and Turk (1984), assuming that individuals with stomas experience adjustment d i f f i c u l t i e s s i m i l a r to ind i v i d u a l s with other chronic conditions, used a biopsychosocial model of chronic i l l n e s s to examine a range of adjustment d i f f i c u l t i e s i n a sample of 131 ind i v i d u a l s . Those with ileostomies made up 54% of the 21 sample, those with colostomies 39%, and those with urostomies 8%. The median time since surgery was 4.5 years. Technical d i f f i c u l t y was the most prevalent problem area c i t e d . Eighty-four percent of the sample reported having problems with one or more aspects of tech n i c a l management, with skin problems being the most commonly reported. Other frequently encountered tech n i c a l problems included leakage, odour, d i e t , clothing, and noise of the stoma. Approximately one-t h i r d of the sample reported emotional and s o c i a l d i f f i c u l t i e s and almost half of the sample indicated sexual a c t i v i t y had become a problem since surgery. A s i g n i f i c a n t proportion indicated that t h e i r f a m i l i e s and marriages had experienced d i f f i c u l t i e s due to the stoma. Forty-six percent f e l t that they had received inadequate information about t h e i r stoma a f t e r surgery and 40% f e l t t h e i r spouse also had received inadequate information. An association was found between techn i c a l d i f f i c u l t i e s and impaired emotional, s o c i a l , and marital/family functioning. In addition, an association was determined between emotional d i f f i c u l t i e s and problematic s o c i a l marital/family 22 adjustment, and impaired sexual functioning. F i n a l l y , adequate information was associated with fewer techn i c a l problems and better emotional and s o c i a l adjustment. The authors recommend that patients be given more assistance with technical management, more information about how to cope with l i v i n g with a stoma, and that the spouse or s i g n i f i c a n t other be included i n the pre-and post-operative teaching sessions. Results obtained from an early study by Dyk and Sutherland (1956) also support the finding that an association exists between the a b i l i t y to adapt to a stoma and a supportive spouse. To determine the physical and emotional needs of individuals with stomas and the spouses' responses to t h e i r needs, 22 men and 16 women who had a permanent colostomy constructed within the previous 5 to 14 years were interviewed. The authors concluded that the emotional reaction of the spouse to the stoma was an important influence on the ind i v i d u a l ' s own a b i l i t y to adapt. Recognizing that the response of the spouse to a stoma plays a s i g n i f i c a n t role i n an indiv i d u a l ' s adaptation, Kobza (1983) used a semi-structured 23 interview t o o l to determine the expressed needs of 20 spouses who had partners with a stoma. The most common needs expressed were for more information and for more support. Approximately half stated they had received no information post-operatively regarding stoma care and f o r those who did receive information i t pertained only to physical care. With regard to the need fo r support, a l l the spouses had a tendency to hide t h e i r f e e l i n g s i n front of t h e i r partner and only about half had any outside support. Many expressed a desire to have someone to t a l k with or to give them some guidance. The author concludes that health care professionals should do more to incorporate the spouses into the r e h a b i l i t a t i o n program, e s p e c i a l l y i n l i g h t of the v i t a l r o l e they can play. D l i n (1978), a p s y c h i a t r i s t , suggests that attitudes and values associated with elimination influence one's emotional adaptation to a colostomy or ileostomy. He claims that at an early age i n d i v i d u a l s learn that control of stool or gas i s rewarded with love and praise and lack of control with disapproval, punishment, threat, and r e j e c t i o n . An i n d i v i d u a l with a f e c a l diversion, who lacks control of either the elimination of stool or gas, may therefore experience fe e l i n g s of shame, disgust, or g u i l t . In addition, the i n d i v i d u a l can no longer achieve privacy when he i s passing s t o o l , which Dlin (1978) claims i s also cherished by our society. Rather stool or gas i s uncontrollably passed from a protruding stoma on the abdomen into a p l a s t i c pouch. Dli n (1978) concludes that these c u l t u r a l attitudes and values add to the psychosocial challenge of adapting to newly created stomas. In summary, the l i t e r a t u r e reveals that although most ind i v i d u a l s with stomas can lead f u l f i l l i n g l i v e s , they may be faced with numerous technical, emotional, s o c i a l , and c u l t u r a l challenges which demand ongoing adaptation for both themselves and t h e i r partners. However, the l i t e r a t u r e does not acknowledge i f s i m i l a r challenges are endured during pregnancy or, indeed, how these challenges may a f f e c t the childbearing experience. Stomas and Pregnancy: Medical Reports A review of the medical l i t e r a t u r e revealed s i x useful studies between 1957 and 1993 pertaining to stomas and pregnancy. The following are b r i e f 25 summaries of these studies, as they appear i n chronological order of publication. The general tendency to advise against pregnancy i n women with ileostomies aft e r colectomy for u l c e r a t i v e c o l i t i s prompted two American studies by Scudamore, Rogers, Bargen and Banner (1957) and P r i e s t , G i l c h r i s t and Chicago (1959). A colectomy i n these early studies referred to either a sub-total or a proctocolectomy. The purpose of both studies was to determine i f , indeed, an ileostomy i n t e r f e r e d with pregnancy. Scudmore et al.(1957) included 18 pregnancies i n 12 women with a t o t a l of 13 l i v e b i r t h s . The non-live b i r t h s were attributed to one spontaneous abortion i n the f i r s t trimester following an i n c i s i o n and drainage of an abdominal abscess; two abortions i n the f i r s t trimester for which the causes were not stated but i t was reported that segments of diseased bowel remained at the time of the abortion; one s t i l l b i r t h at seven months; and one hysterotomy performed for a severe exacerbation of the c o l i t i s . P r i e s t et a l . (1959) included 13 pregnancies i n 7 women with a t o t a l of 10 l i v e births and three early 26 spontaneous abortions. Two of these abortions occurred i n the same woman after two uneventful pregnancies following surgery for an ileostomy. The cause of the t h i r d abortion was not explained but i t was reported that segments of diseased bowel remained at the time of the abortion. In the study by Scudmore et a l . (1957), a l l the women who delivered did so vaginally, as did a l l but one, i n the study by P r i e s t et a l . (1959). The in d i c a t i o n for Caesarean section was a 22 hour labour with the breech presenting. Both studies reported p a r t i a l small bowel obstructions during pregnancy as a complication, occurring once i n the Scudmore et a l . (1957) study and three times i n the P r i e s t et a l . (1959) study. The causes of these bowel obstructions were not reported. Scudmore et a l . (1957) reported that the obstruction occurred i n a woman two weeks before her due date. In t h i s case labour was induced and the symptoms promptly subsided. P r i e s t et a l . (1959) reported that one of the obstructions was act u a l l y occasional cramping sensations near the stoma and the other two each occurred at seven months gestation. A l l of these obstructions responded to 27 conservative management. Other complications reported by Scudmore et a l . (1957) included one incident of stomal prolapse which did not int e r f e r e with the pregnancy and appeared not to have been treated; one relapse of c o l i t i s i n a section of colon that had not been removed; and two cases of compromised healing of the episiotomy i n cases where the rectum had been removed and the perineum consequently scarred. P r i e s t et a l . (1959) also reported one case of an intussusception which required r e v i s i o n of the ileostomy. The authors of both studies concluded that, with c a r e f u l supervision, women with colectomy and ileostomy may safely undergo pregnancy with the expectation of a normal delivery i n most instances. In response to a questionnaire c i r c u l a t e d to members of the English Ileostomy Association, Hudson (1972) received information about 89 pregnancies involving 75 women. The purpose of the study was to determine the problems with pregnancy a f t e r ileostomy. An ileostomy i n t h i s study referred to either a f e c a l diversion or a urinary diversion when a segment of ileum i s used to construct a stoma. The p r i n c i p l e indications for ileostomy for f e c a l diversion were 28 u l c e r a t i v e c o l i t i s and Crohn's disease. Urinary diversion included four cases of congenital spina b i f i d a and meningomyelocele and one case of p e l v i c fracture. The 89 pregnancies comprised 84 l i v e b i r t h s , three miscarriages and two terminations. One of the terminations was due to bowel obstruction and the other was not explained. Vaginal d e l i v e r i e s were performed i n 4 3 of 60 pregnancies going to term i n which the methods of delivery were reported. The 17 Caesarean sections that were reported were usually performed for o b s t e t r i c a l indications but at least one was f o r a prolapsed stoma. The most noteworthy complication was bowel obstruction, with seven cases reported. The causes for these, however, were not reported but the author did suggest that, since obstructions within t h i s population of individuals can occur even i n the non-pregnant state, those reported i n the study may not necessarily be due to an enlarging uterus obstructing the stoma but rather to complications from previous bowel surgery. The author also cautions that i t may be d i f f i c u l t to diagnose a bowel obstruction i n t h i s group of i n d i v i d u a l s due to the fact that the symptoms of an obstruction are often similar to symptoms of pregnancy. 29 Since an undiagnosed obstruction can have serious consequences, he recommends that laparotomies be considered for any unusual pain. Other stomal problems mentioned included ileostomy prolapse and stomal enlargement. F i n a l l y , the author concludes that pregnancy i s not contraindicated for individuals with ileostomies. In another study conducted i n Ireland over a span of s i x years, 20 primigravid patients with ileostomies were compared to a selected group of 100 primigravida i n the same age group (Barwin, Harley, & Wilson, 1974). The purpose was to analyze the e f f e c t of pregnancy on the ileostomy and the e f f e c t of the ileostomy on pregnancy, labour and the puerperium. A l l the women i n the study group had proctocolectomies, 19 cases for u l c e r a t i v e c o l i t i s and one for Crohn's disease. The complications of pregnancy for both groups included pre-eclampsia, anaemia, urinary t r a c t i n f e c t i o n , premature labour, induction rate, perineal lacerations, and p e r i n a t a l mortality. The only s i g n i f i c a n t differences found i n the study group compared with the control group were a higher incidence of anaemia, a higher Caesarean section rate, and a higher incidence 30 of perineal lacerations. The incidence of anemia was 2 0% i n the study group compared with 13% i n the control group, with the incidence i n the study group decreasing as the i n t e r v a l between surgery and pregnancy increased. Caesarean section rate was 40% i n the study group with the main indication being severe perineal scarring from previous abdominoperineal resection. In comparison, the Caesarean section rate was 10% i n the control group. The authors attribute the increased incidence of perineal lacerations i n the study group to previous abdominoperineal resections. F i n a l l y , the authors report that there were no cases of obstruction due to the enlarging uterus blocking off the stoma and no cases of prolapse of the ileostomy. They suggest that good antenatal care and management during labour w i l l minimize complications and consequently be psychologically b e n e f i c i a l to the ileostomy patient. They conclude that ileostomy patients can have successful pregnancies without complications to the ileostomy or to the pregnancy. To determine i f individuals with stomas can become pregnant following surgery and, i f so, the occurrence of unusual complications r e l a t i n g to the stoma or the 31 pregnancy, Gopal et a l . (1985), sent questionnaires to 1246 members of the American Society of Colon and Rectal Surgeons, which includes membership both inside and outside the United States. The r e p l i e s to the survey provided a series of 82 pregnancies i n 66 women with a t o t a l of 79 l i v e b i r ths, two spontaneous abortions at eight and 14 weeks gestation, and one s t i l l b o r n at 29 weeks gestation following c o r r e c t i v e surgery for a bowel obstruction. Sixty-four percent of the sample had ulcerative c o l i t i s before bowel surgery with stoma, 17% had Crohn's disease, 5% had bowel cancer, and a few had other indications. Seven women had colostomies, 57 women had ileostomies, one woman had a urostomy, and one was unspecified. Of the 82 pregnancies 50 resulted i n vaginal d e l i v e r i e s and 30 i n Caesarean sections. The Caesarean sections were done i n 11 cases because of infant d i s t r e s s , i n 9 cases because the physician believed that p r i o r abdominoperineal resection would prevent a safe vaginal b i r t h , i n f i v e cases because previous Caesarean sections had been done, i n two cases for bowel obstructions, and i n one case each for ileostomy prolapse and a urostomy nipple valve r e t r a c t i o n . The 32 i n d i c a t i o n for one section was unspecified. Complications included six bowel obstructions, two of which occurred i n the l a t t e r part of pregnancy and were due to the pressure of the enlarged uterus on the bowel. Three of the obstructions required co r r e c t i v e surgery during pregnancy. Prolapse of the stoma during pregnancy occurred twice i n one woman and once i n three women. One was corrected two months af t e r d e l i v e r y and the others were repaired during pregnancy with or without Caesarean section. No mention was made as to the cause for these prolapses. The authors conclude that women with stomas can become pregnant a f t e r surgery and successfully de l i v e r children vaginally, but recommend that an obstetrician and a c o l o r e c t a l surgeon work together throughout the pregnancy. N i c h o l l , Thompson, and Cocks (1993) presented case reports of three pregnant women i n New Zealand, two of whom had colostomies and one of whom had an ileostomy. A l l of the women had Crohn's disease. In the f i r s t case, pregnancy was complicated by a 20 cm stomal prolapse and the development of a peristomal hernia i n the f i r s t trimester. The prolapse was reducible i n the prone p o s i t i o n but a r e s t r i c t i v e binder was required 33 when i n the upright position. To accommodate the prolapse, the woman used a two-piece pouching system with a f l e x i b l e wafer which was modified with r a d i a l s l i t s cut into the stoma opening. The authors do not suggest a cause for the prolapse but state that i t was not re l a t e d to hyperemesis which may be a precursor to prolapse. Both the prolapse and the hernia were repaired at term i n conjunction with a Caesarean section. In the second case, there were no physical problems with the stoma during pregnancy and the woman went into spontaneous labour at 41 weeks gestation and had a vaginal delivery with low mid-cavity forceps for delay i n the second stage. The authors noted i n t h i s case that the woman, upon learning she was pregnant, was keen to read any information available about pregnancy with a stoma and was disappointed to discover that such information was scarce. She was apparently happy to discuss and document her experience and the authors suggest that these strategies provided her with a means of interpreting the events. In the t h i r d case, pregnancy was complicated i n two instances by bowel obstructions, the f i r s t one 34 occurring at 13-14 weeks gestation and the second one at 15 weeks gestation. In each instance conservative management with nothing by mouth and intravenous f l u i d s produced resolution of symptoms over 24 to 48 hours. The woman had an el e c t i v e Caesarean section at 42 weeks gestation for a high unengaged cephalic presentation. In summary, Ni c h o l l et a l . (1993) suggest that the majority of stoma patients can expect a r e l a t i v e l y normal antenatal course and subsequent delivery. However, they indicate that bowel obstruction can be a serious p o t e n t i a l problem i n a pregnant woman with a stoma. This may re s u l t from a l a t e r a l displacement or re t r a c t i o n of the bowel, a volvulus, l a t e r a l space herniation, or adhesions. They state that d i f f i c u l t y a r i s e s when t r y i n g to d i f f e r e n t i a t e the obstruction from normal pregnancy for symptoms such as vomiting, c o l i c , distension, and constipation are frequently seen i n both s i t u a t i o n s . They therefore caution that a bowel obstruction should be suspected i n any patient who has undergone previous abdominal surgery and they recommend conservative treatment for the f i r s t 24 to 48 hours and followed by surgery i f necessary. The authors also recommend that psychological aspects of 35 the care of the pregnant patient with a stoma be considered and suggest that pregnancy may be a means for these individuals to reconstruct a normal i d e n t i t y . In conclusion, six studies occurring i n the United States, B r i t a i n , Ireland, and New Zealand over a span of 26 years dealing with stomas and pregnancy were reviewed. They were a l l done by physicians and focused pr i m a r i l y on medical considerations of pregnancy with a stoma. The studies ranged i n size, from a c o l l e c t i o n of three case reports to others involving 82 and 89 pregnancies. In each study the ileostomy was the most common diversion but the indications for i t varied according to the age of the study. In the studies conducted i n the 1950's the chief i n d i c a t i o n was ul c e r a t i v e c o l i t i s but i n lat e r years, i t has become Crohn's disease. This r e f l e c t s the trend i n the su r g i c a l management of ulcerative c o l i t i s away from colectomy with ileostomy to colectomy with conservation of the r e c t a l stump and reconstruction of an i n t e r n a l pouch. Research suggests that the majority of women with stomas can anticipate uncomplicated pregnancies with vaginal d e l i v e r i e s . In the studies reviewed, the 36 incidence of l i v e b i r t h s ranged from 72% and 77% i n the early studies to 96% and 100% i n the l a t e r studies. I t i s i n t e r e s t i n g to note that i n the early studies a l l the women had ulcerative c o l i t i s and the s u r g i c a l treatment was not necessarily t o t a l colectomy as i t was i n the l a t e r studies. In fact, segments of diseased bowel s t i l l remained i n three of the f i v e women who had abortions i n the f i r s t study and one of the three women i n the second. Although a flare-up of the disease was reported i n only one of these cases during pregnancy, the women's health may have been compromised. I t i s also i n t e r e s t i n g to note that there were no reports i n any of the six studies of flare-ups of Crohn's disease during pregnancy. The incidence of vaginal d e l i v e r i e s varied from 100% i n the e a r l i e s t study to 60% i n the study i n Ireland i n 1974, not including the most recent study i n New Zealand where only one of the three cases had a vaginal delivery. The indications for Caesarean section were usually o b s t e t r i c a l but did infrequently include bowel obstruction, stomal prolapse, and perineal scarring following abdominoperineal resection of the rectum. The most frequent and the most serious complication reported was bowel obstruction, occurring i n 8% and 7% of the two largest studies. I t appears to be d i f f i c u l t to determine i f obstructions were a r e s u l t of an enlarged uterus applying pressure on a stoma or a r e s u l t of previous bowel surgery. In most cases symptoms of the obstruction subsided with conservative management. Two authors mentioned the d i f f i c u l t y i n diagnosing an obstruction i n a pregnant women as the symptoms of an obstruction are often s i m i l a r to symptoms of pregnancy. The other most commonly c i t e d complication was stomal prolapse. Of the seven reported, f i v e were treated s u r g i c a l l y during pregnancy with or without a Caesarean section. Stomas and Pregnancy: Anecdotal Accounts A review of the Ostomy Quarterly, a United Ostomy Association (UOA) publication, revealed six anecdotal reports between 1975 and 1994 about the subject (Beaton, 1994; Goldfarb, 1991; Hoppes, 1975; Laughlin, 1991; Nordgren, 1993; Van Buskirk, 1985). Four of the women had ileostomies and two had urostomies. The indications for the ileostomies included three cases of ulc e r a t i v e c o l i t i s and one case of Crohn's disease and 38 the indications for the urostomies included cerebral palsy and i n t e r s t i t i a l c o l i t i s . A l l six women reported having had uneventful vaginal d e l i v e r i e s , with the exception of one 7 week premature delivery. To analyze these autobiographical accounts, data were categorized according to physical, te c h n i c a l , emotional, and s o c i a l concerns. With regard to physical concerns three women mentioned that t h e i r stomas enlarged during t h e i r pregnancies, one woman sta t i n g her stoma had expanded from 2.8 cm i n diameter to 5.1 cm. One woman complained of adhesions during the pregnancy causing only minor problems and one woman complained of varicose veins along the perineal i n c i s i o n causing perineal discomfort. Only one woman mentioned that she had adjusted her die t and t h i s was merely to increase f l u i d s . With regard to technical issues, two women mentioned having to increase the size of the stoma openings on t h e i r skin barriers to accommodate t h e i r larger stomas and one woman said that the pregnancy in t e r f e r e d with her a b i l i t y to see her stoma and she therefore had to resort to a mirror to a s s i s t with the appli c a t i o n procedure. 39 With regard to emotional issues, of those who reported t h e i r reactions upon discovery of t h e i r pregnancy, a l l expressed feelings of joy and ecstasy. Two women commented that they were gr a t e f u l that the surgery and ileostomy had provided them with the opportunity to become pregnant. Several women reported t h e i r concerns about t h e i r pregnancies progressing normally due to t h e i r ileostomies and one woman with Crohn's disease worried that her children could develop Crohn's disease. With regard to s o c i a l issues, a l l the women reported having very supportive husbands. Two of the women mentioned having received a great deal of support from other women with stomas who had experienced pregnancy, and two women ci t e d t h e i r l o c a l ostomy associations as being h e l p f u l i n giving them a r t i c l e s pertaining to stomas and pregnancy and names of other women to locate. One woman, however, said that the ostomy association only had information about pregnancies and ileostomies and since she had a urostomy, t h i s information was of no help to her. With regard to health professionals, two women reported that t h e i r obstetricians had been very informative and 40 supportive and. that one of them had act u a l l y arranged for the nurses i n the hospital to have a refresher course i n stoma management i n preparation for her hos p i t a l admission. Two of the women mentioned that they f e l t they had provided the hospital nurses with an opportunity to learn about stoma management. In summary, a l l the women had normal d e l i v e r i e s and produced healthy babies. Their fears that somehow t h e i r stoma might in t e r f e r e with the experience were unproven. A l l claimed to have had very supportive husbands. None complained about the care they received and yet the only supportive group of health care professionals mentioned were obstetricians. In general, pregnancy was perceived by a l l to be a very p o s i t i v e and uncomplicated experience. However, i t i s possible that these experiences are not t y p i c a l for pregnant women with stomas since, perhaps only those with successful pregnancies selected to publish t h e i r accounts. Pregnancy and Chronic I l l n e s s Although the nursing l i t e r a t u r e does not s p e c i f i c a l l y address the implications of a stoma on childbearing, several a r t i c l e s addressing the 41 implications of chronicity, i n general, on pregnancy do ex i s t . A review of these a r t i c l e s may provide i n s i g h t into the childbearing experience for women with stomas. Shaul, Dowling, and Laden (1987), claim that u n t i l recently there has been a c u l t u r a l bias that women with d i s a b i l i t i e s should not bear and ra i s e children and consequently the needs of such women during pregnancy have been neglected. To investigate the concerns of disabled women i n regard to pre-natal and o b s t e t r i c a l care and early childhood, they interviewed ten women with a vari e t y of d i s a b i l i t i e s . On the basis of these interviews the authors draw several conclusions. They conclude that most women with d i s a b i l i t i e s , i n deciding whether or not to become pregnant, want to speak with a woman with a sim i l a r d i s a b i l i t y who has gone through pregnancy. They want to know what to anticipate during pregnancy and after the baby i s born. The authors also conclude that pregnancy for disabled women does not usually cause a tremendous inconvenience and that support systems, such as Lamaze classes, a v a i l a b l e to non-disabled pregnant women, can be hel p f u l to disabled women as well. F i n a l l y , they conclude that experiences with labour and delivery are similar to those of non-42 disabled women. Corbin (1987) studied strategies used by ch r o n i c a l l y i l l women to manage medical r i s k factors of pregnancy. A sample of 20 women whose pregnancies were complicated by a variety of chronic i l l n e s s e s was interviewed. The resu l t s of the study suggest that the women themselves play a s i g n i f i c a n t part i n the management of t h e i r pregnancies. The actions they s e l e c t to maximize t h e i r chances of having a healthy baby are determined by t h e i r own assessment of the r i s k s and the options they perceive open to them. The author, therefore, concludes that health care providers and the women should cooperate to formulate a common management plan. To achieve shared management, women should be given information about a variety of strategies they might use to manage t h e i r i l l n e s s e s and pregnancies and they should be helped to incorporate these strategies into t h e i r d a i l y l i v e s . Further, the author concludes that women should be informed about a l l the r i s k s and benefits associated with a treatment i n order to allow them to make the "right decision". F i n a l l y , both the health care providers and the affected women should share t h e i r respective knowledge: 43 the health care providers contributing medical knowledge and the women contributing knowledge about how the i l l n e s s a f f e c t s t h e i r bodies. Carty (in press), i n presenting an overview of current knowledge regarding childbearing with a v a r i e t y of d i s a b i l i t i e s , concludes with recommendations for nursing practice that can be applied to a l l women with d i s a b i l i t i e s , regardless of the nature of the d i s a b i l i t y . These recommendations include: the need to provide services i n both physically accessible settings and psychologically assessable settings, that i s , settings which communicate respect and s e n s i t i v i t y ; the need to provide pre-pregnancy counselling to a s s i s t the woman and her family with decision-making about becoming pregnant; the need to plan for spe c i a l needs of labour and b i r t h and review these needs with h o s p i t a l s t a f f p r i o r to h o s p i t a l i z a t i o n ; and the need to provide pre-natal counselling to a s s i s t the mother to prepare for the many needs of the postpartum period. In summary, with respect to pregnancy, women with chronic conditions share common psychosocial concerns and have s i m i l a r needs. An awareness of these issues w i l l enable health care p r a c t i t i o n e r s to provide more 44 s e n s i t i v e and e f f e c t i v e care. Summary A review of the l i t e r a t u r e reveals that there are a v a r i e t y of conditions which indicate the need for a stoma i n women of childbearing age, the most common currently being Crohn's disease; that stomas have an ongoing impact on the d a i l y l i v e s of in d i v i d u a l s ; that, despite s p e c i f i c medical considerations, women with stomas may successfully bear children; that anecdotal accounts e x i s t which c o l l e c t i v e l y describe selected physical, technical, emotional, and s o c i a l issues s p e c i f i c to pregnancies and stomas; and that women with a v a r i e t y of d i s a b i l i t i e s or chronic i l l n e s s e s share s i m i l a r psychosocial concerns with respect to pregnancy. However, the small body of research-based l i t e r a t u r e concerning the ef f e c t of stomas on pregnancy that does e x i s t has been contributed by physicians and has focused primarily on physiological issues. There i s no e x i s t i n g research-based l i t e r a t u r e about the e f f e c t of a stoma on the childbearing experience from a nursing perspective. 45 CHAPTER THREE Methodology Introduction This study used a case study research design to explore the childbearing experience for a woman with a stoma. In t h i s chapter an overview of the research design, s e l e c t i o n of the participants, e t h i c a l considerations, data c o l l e c t i o n and analysis, and r e l i a b i l i t y and v a l i d i t y are considered. Research Design The d i s t i n c t i v e need for a case study design a r i s e s from the desire to understand complex s o c i a l phenomena (Yin, 1994) . Its unique strength i s i t s a b i l i t y to deal with a var i e t y of evidence, such as interviews, observations, and documents (Yin, 1994). In t h i s thesis case study methodology was selected to explore, i n depth, a subject of which l i t t l e i s known: the childbearing experience for a woman with a stoma. According to Yin (1994) the case, or unit of analysis, may r e f e r to an in d i v i d u a l , a group of individuals, or an event. However, regardless of what the unit refers to, i t s s p e c i f i c time boundaries must be defined. If the study i s concerned with one unit of analysis i t i s referred to as a single-case study and i s considered an appropriate design when the 46 phenomenon or phenomena of interest i s rare, or c r i t i c a l , or revelatory i n nature. If more than one such case i s included i n the study, the study i s referred to as a multiple-case design. Multiple-case designs must be considered as multiple experiments and not as multiple subjects within one experiment (Yin, 1994). That i s , conducting s i x or ten case studies i s analogous to conducting six or ten separate experiments. Each individual case study i s a complete study i n which convergent evidence i s sought regarding the facts and conclusions for the case. The case study protocol i s r e p l i c a t e d for each case and the findings compared across cases. A multiple-case study design was selected for t h i s study. Even though six cases were selected for the study, the phenomenon i s s t i l l rare as only eight such cases were reported i n the past 18 months i n the Lower Mainland, Fraser Valley, and Sunshine Peninsula of B r i t i s h Columbia. Each case i s defined as the childbearing experience for a woman with a stoma, with childbearing having a d e f i n i t e duration from conception to postpartum. To ensure that a design i s appropriate for a selected study, Yin (1994) suggests that the researcher should 47 consider the following c r i t e r i a : the type of question being posed; the extent behaviours can be manipulated; and the degree of focus on contemporary events as opposed to h i s t o r i c a l ones. Case study design i s preferred when the research questions are concerned with operational l i n k s rather than with frequencies or incidence and, as such, are often "how" or "why" questions rather than "who", "what", or "where" questions (Yin, 1994). Also, case study design i s preferred when the relevant behaviour cannot be manipulated and when the study i s concerned with examining contemporary events as opposed to h i s t o r i c a l ones (Yin, 1994). The h i s t o r i c a l method i s preferred when the researcher must r e l y on documents and a r t i f a c t s as opposed to " l i v e " i n d i v i d u a l s to obtain evidence. With these c r i t e r i a i n mind, case study design appeared to be appropriate for t h i s study. The research question for the study s a t i s f i e d the f i r s t c r i t e r i a as i t i s a "how" question, s p e c i f i c a l l y "how does a stoma a f f e c t the childbearing experience?". Further, the study was not concerned with manipulating behaviour and focused on contemporary events as opposed to h i s t o r i c a l ones. Selection of the Participants The selection c r i t e r i a and selection procedures w i l l be 48 described. C r i t e r i a for Selection The participants for t h i s study included the women with stomas who had experienced c h i l d b i r t h , t h e i r respective partners, and the physicians who provided o b s t e t r i c a l care during pregnancy and delivery. The women who participated were selected based on the c r i t e r i a that they had given b i r t h to a c h i l d within the past approximate 18 months; that they had a stoma when they gave b i r t h ; and that they were w i l l i n g and able to speak about the experience. Partners who participated i n the study were selected for t h e i r a v a i l a b i l i t y and willingness to share t h e i r observations about the childbearing experience. Physicians who participated i n the study were selected by the women who had experienced c h i l d b i r t h . The c r i t e r i a for t h e i r s election included t h e i r involvement i n the pregnancy and delivery and t h e i r willingness and a v a i l a b i l i t y to discuss t h i s experience with the researcher. Since multiple-case designs follow r e p l i c a t i o n l o g i c rather than sampling l o g i c , the data c o l l e c t e d w i l l only be compared between cases i n support of the conceptual framework rather than making d i r e c t inferences to a larger 49 population. Selection Procedures The President of the Vancouver Chapter of the United Ostomy Association (UOA) and four enterostomal therapy (ET) nurses p r a c t i s i n g i n the Lower Mainland and Fraser Valley of B r i t i s h Columbia were sent introductory l e t t e r s (Appendix A) describing the purpose of the study and asking for t h e i r p a r t i c i p a t i o n i n sending an information l e t t e r (Appendix B) to any c l i e n t with a stoma who had experienced c h i l d b i r t h within the past approximate 18 months. Information l e t t e r s were sent to eight c l i e n t s i n the Lower Mainland, Fraser Valley, and Sunshine Peninsula who were known to f i t the c r i t e r i a . The l e t t e r included a description of the purpose of the study and the researcher's desire to interview them, t h e i r partner, and the physician involved i n t h e i r c h i l d b i r t h experience. Women interested i n p a r t i c i p a t i n g were then asked to contact the researcher. The researcher would have been s a t i s f i e d with a single case study but, as i s often the case with areas about which l i t t l e i s understood, individuals wanted an opportunity to t a l k and consequently s i x women volunteered to p a r t i c i p a t e . The partners of a l l but one also volunteered to p a r t i c i p a t e i n the study. A l l the women granted permission to the 50 researcher to interview the physician involved i n t h e i r childbearing experience and provided the researcher with t h e i r names. An information l e t t e r was then sent to the physicians, describing the purpose of the study and requesting t h e i r p a r t i c i p a t i o n i n describing the c h i l d b i r t h experience (Appendix C). Characteristics of the Participants Six women, f i v e partners, and f i v e physicians p a r t i c i p a t e d i n the study. One partner refused to pa r t i c i p a t e and two women had the same physician. At the time of c h i l d b i r t h , the women ranged i n age from 24 to 39 years of age. A l l the women had ileostomies, one a consequence of ulcerative c o l i t i s and the others, consequences of Crohn's disease. At the time of t h e i r p a r t i c i p a t i o n i n the study a l l had experienced c h i l d b i r t h within the past 28 months. For two women i t was t h e i r second pregnancy with an ileostomy and for four, t h e i r f i r s t . However, two of these four had been pregnant p r i o r to bowel surgery with ileostomy. E t h i c a l Considerations The researcher ensured protection of the r i g h t s of the informants by: 1. Obtaining approval from and adhering to the 51 standards set by The University of British Columbia Behaviourial Sciences Screening Committee For Research and Other Studies Involving Human Subjects. 2. Explaining to the participants i n writing the purpose of the study and the expectations the researcher has for t h e i r involvement. 3. Obtaining written consent from each woman (Appendix D) and her respective partner (Appendix E) p r i o r to conducting the i n i t i a l interview. The consents addressed the audio-taping of interviews and the p a r t i c i p a n t s ' r i g h t to refuse to comment or to withdraw from the study at any time without consequence. 4. Obtaining written consent from each woman to interview the physician involved i n her childbearing experience (Appendix F). 5. Assuring the participants that any information they shared would be held i n the s t r i c t e s t confidence and that they would never be i d e n t i f i e d i n any published or unpublished materials. In addition, they were t o l d that the audio-tapes would be erased following completion of the study. Data Col l e c t i o n Each in d i v i d u a l case of a multiple-case study design i s 52 a complete study within i t s e l f . This multiple-case study design included s i x cases and the data c o l l e c t i o n procedures were r e p l i c a t e d for each case. Data c o l l e c t e d for case studies may come from a vari e t y of sources of evidence including documents, a r c h i v a l records, interviews, observations, and physical a r t i f a c t s (Yin, 1994). Despite the sources of evidence selected, Yin (1994) suggests that the benefits derived from the data can be maximized by adhering to three p r i n c i p l e s of data c o l l e c t i o n . The f i r s t p r i n c i p l e i s that multiple sources of evidence, as opposed to single sources, are used to c o l l e c t data about the same phenomenon. This process, referr e d to as tr i a n g u l a t i o n , leads to converging l i n e s of inquiry and ultimately strengthens the findings or conclusions of the study. Each case i n the study r e l i e d on interviews with the woman who experienced c h i l d b i r t h as well as her partner and physician. To c o l l e c t data from the women and t h e i r partners an informal interview guide, consisting of open and closed-ended questions was used (Appendix G). Each interview was audio-taped and lasted approximately one hour. I t was conducted i n a setting of the participant's choice. A l l the 53 women selected to be interviewed i n t h e i r own homes. Three women agreed to have t h e i r partners interviewed during the same v i s i t and two requested that t h e i r partners be interviewed on the telephone at a l a t e r date. Each woman was contacted following the interview to seek c l a r i f i c a t i o n of data. On completion of the interviews, the audio-tapes were transcribed and analyzed. Physicians selected by the women to be informants for the study were interviewed on the telephone. Open and closed-ended questions were used to s o l i c i t t h e i r impressions of how the stoma affected the childbearing experience (Appendix H). The researcher made notes during these telephone interviews and relevant quotations were used i n the case report. The second p r i n c i p l e of data c o l l e c t i o n described by Yin (1994) pertains to the organization and documentation of the data. Yin (1994) recommends that the researcher using case study methodology establish a presentable database of evidence so that other researchers can review the evidence d i r e c t l y and not be limited to written case reports. Due to e t h i c a l considerations, a database was maintained only u n t i l the study was completed and was made accessible only to members of the research committee. 54 The t h i r d p r i n c i p l e of data c o l l e c t i o n i s concerned with maintaining a chain of evidence so that the reader can follow the derivation of evidence from the research question to the conclusions and vice versa. One method to maintain a chain of evidence i s to incorporate s u f f i c i e n t c i t a t i o n of the relevant portions of the case study database into the report (Yin, 1994). In t h i s study d i r e c t quotations from the t r a n s c r i p t s were included i n the written case reports. A chain of evidence can also be achieved by maintaining a l i n k between the content of the protocol and the i n i t i a l study questions. To achieve t h i s l i n k , questions about the e f f e c t of the stoma on pregnancy were organized around major concepts selected from Snyder's (1979) childbearing framework: the physiological system, the s e l f system, the family system, the s o c i a l system, and the c u l t u r a l system. Major areas of concern i d e n t i f i e d from the l i t e r a t u r e review also contributed to the content of the interview guide. Data Analysis In a multiple-case study research design the data for each case are analyzed separately and then a comparison i s made across cases. Data from a l l sources were thoroughly examined f o r each case: the transcriptions of the interviews with the women 55 and t h e i r partners; and the notes taken during the telephone interviews with the physicians and partners. Yin (1994) suggests that the analysis can be f a c i l i t a t e d by making a matrix of categories and placing the data within the categories. In keeping with t h i s recommendation, the data for each case were grouped according to the major concepts of Snyder's (1979) childbearing framework (Appendix I) and analyzed separately to determine how the stoma a f f e c t s each system and how the systems interact to create a unique and h o l i s t i c experience for each individual woman. Findings were then compared across cases and presented i n a cross-case report. Yin (1994) suggests that the qu a l i t y of the analysis i s enhanced when the researcher brings expert knowledge to the case study. The researcher for t h i s case study i s a c e r t i f i e d ET nurse and i s cognizant of current issues about stomas. My expert knowledge and experience with i n d i v i d u a l s with stomas was most useful i n the analysis of the data. R e l i a b i l i t y and V a l i d i t y Case study methodology can employ a v a r i e t y of t a c t i c s to achieve r e l i a b i l i t y and v a l i d i t y . Yin (1994) suggests that r e l i a b i l i t y can be achieved by following a case study 56 protocol and including s u f f i c i e n t c i t a t i o n to the relevant portions of the database within the case study report. Both t a c t i c s would enable a l a t e r researcher to repeat the case study and a r r i v e at similar findings and conclusions. The case study protocol i s intended to guide the researcher i n carrying out the study. Yin (1994) recommends that the protocol should include an overview of the case study project d e t a i l i n g the purpose of and the s e t t i n g for the study; an account of the data c o l l e c t i o n procedures u t i l i z e d ; an interview guide o u t l i n i n g s p e c i f i c questions to be asked and probable sources of evidence to be used; and a plan for reporting the findings. These recommendations were adhered to. The second method recommended by Yin (1994) to achieve r e l i a b i l i t y , namely the inclusion of s u f f i c i e n t evidence i n the case report, enables other researchers or readers of the case reports to review the evidence and draw independent conclusions. Yin (1994) suggests that the v a l i d i t y of a case study design can be enhanced by ensuring the presence of both construct and external v a l i d i t y . To achieve construct v a l i d i t y , a chain of evidence and multiple sources of data were used. Both t a c t i c s helped to ensure that data 57 c o l l e c t i o n procedures did indeed r e f l e c t the research question and both were described e a r l i e r i n the discussion of data c o l l e c t i o n . Another t a c t i c to achieve construct v a l i d i t y i s to have the draft case study report reviewed by key part i c i p a n t s and other researchers. In t h i s study the d r a f t report was reviewed by members of the research committee and by the women involved with the childbearing experiences. These reviews greatly reduced the l i k e l i h o o d of reporting f a l s e findings. The external v a l i d i t y of a case study i s concerned with whether the study's findings can be generalized beyond the scope of the study. Case studies r e l y on a n a l y t i c a l generalization as opposed to s t a t i s t i c a l generalization (Yin, 1994). That i s , i n case study methodology, the researcher t r i e s to generalize a p a r t i c u l a r set of r e s u l t s to a broader theory rather than to a larger population. A theory must be tested through r e p l i c a t i o n of findings before i t can be used to i d e n t i f y other cases to which the r e s u l t s are generalizable. A multiple-case study can f a c i l i t a t e t h i s process for i t subjects a theory to repeated t e s t i n g . In t h i s multiple-case study, the findings from each case were generalized to the conceptual framework underlying the study. The r e p l i c a t i o n of findings increased the l i k e l i h o o d 58 that the framework might be acceptable for a larger population. Summary This chapter outlined the research design used i n t h i s study. The selection of the participants, e t h i c a l considerations, data c o l l e c t i o n and analysis, and r e l i a b i l i t y and v a l i d i t y were described. A multiple-case study research design enabled the researcher to explore, i n depth, a subject of which l i t t l e i s known. Major concepts selected from Snyder's (1979) childbearing framework were used to organize the c o l l e c t i o n and the analysis of the data. Data for each case were c o l l e c t e d and analyzed separately and the findings compared across cases. 59 CHAPTER FOUR Findings of the Study Introduction This multiple-case study i s a c o l l e c t i o n of s i x in d i v i d u a l case studies, each exploring the childbearing experience for a woman with a stoma. The data for each case were analyzed separately to determine how the stoma affects each system and how the systems interacted to create a unique and h o l i s t i c experience for each woman. The findings are summarized i n s i x i n d i v i d u a l case reports and a comparison of findings i s presented i n a cross-case report. Quotations are integrated throughout the chapter to i l l u s t r a t e and substantiate the researcher's interpretations. Individual Case Reports Case 1 Ms. A. developed ulcerative c o l i t i s when she was 21 years old. At the age of 25 she had a t o t a l proctocolectomy with ileostomy. She became pregnant with her f i r s t and second children at the ages of 34 and 39 respectively. Although the second pregnancy i s the case under consideration, references are also made 60 to the f i r s t one. With her f i r s t pregnancy Ms. A developed a stomal prolapse at 20 weeks gestation which was s u r g i c a l l y revised during pregnancy. At term she had a vaginal d e l i v e r y for a healthy newborn but four days postpartum again experienced a stomal prolapse requiring s u r g i c a l r e v i s i o n . She was concerned about having a second pregnancy in case her stoma should again prolapse and therefore sought pre-pregnancy counselling from her general surgeon. Despite being t o l d she would face the same r i s k s a second time, she and her partner decided to take the r i s k . Her second pregnancy also progressed normally u n t i l at 20 weeks she again had a stomal prolapse. She was less anxious t h i s time as she knew what to expect but nevertheless found the prolapse inconvenient and uncomfortable. After t o l e r a t i n g i t for several weeks she had a laparotomy and s u r g i c a l r e v i s i o n . This procedure placed an added s t r a i n on the family. She and her partner worried about the e f f e c t s of surgery, anaesthetics, and medications on the fetus, plus had to make alternate c h i l d care arrangements for t h e i r toddler during the 10 day hospital stay. 61 Unfortunately the stoma prolapsed again at 36 weeks gestation. To expedite a s u r g i c a l r e v i s i o n i n the non-pregnant state, she was referred to an o b s t e t r i c i a n and an attempt was made to induce labour at 37 weeks. Following two further attempts at induction her membranes were ruptured at 40 weeks and, using one hand to reduce the stoma during a f i v e hour labour and delivery, she gave b i r t h to a healthy newborn. One week postpartum she again had a laparotomy and surgical r e v i s i o n of prolapse. Her stoma also enlarged i n diameter during pregnancy which she attributed to her expanding abdomen. Pr i o r to pregnancy she required a 38 mm flange and during pregnancy, a 57 mm flange. She returned to a 38 mm flange af t e r pregnancy. She also commented that she had greater d i f f i c u l t y concealing her stoma during pregnancy as "It's a l o t harder to disguise a bump on a round tummy." F i n a l l y , she noted, "The baby always sat r e a l l y low [during the pregnancy]" and at t r i b u t e d t h i s to the absence of her colon and rectum. Towards the end of her f i r s t pregnancy she developed a p a r t i a l bowel obstruction which presented with cramping and l i q u i d output. I t lasted three weeks, during which time she " l i v e d on Ensure". She had no bowel obstructions, however, with the second pregnancy. She did not know any other women with stomas who had experienced c h i l d b i r t h and aside from reading a few a r t i c l e s about stomas and pregnancy published by the United Ostomy Association, had l i t t l e knowledge about the experience when she entered her f i r s t pregnancy. She attended pre-natal classes but the impact of the stoma on pregnancy or h o s p i t a l i z a t i o n was never addressed. Of a l l the health care providers she had contact with, her family physician was the one who gave her the most support during pregnancy. He kept her informed about her progress, included her i n decision-making, and provided her with information she needed regarding management of the prolapse and bowel obstruction. He also was able to a l l a y her and her partner's concerns about surgery during pregnancy. Her physician described being concerned about a recurrent prolapse with the second pregnancy and the issue of the most appropriate mode of delivery. He thought a vaginal delivery would increase pressure on 63 the stoma but a Cesarean section might be complicated by adhesions. Despite being concerned that the nurses on the o b s t e t r i c a l ward would not be capable of providing stomal care following surgery, she found she did not need t h e i r assistance aside from the occasional emptying of her pouch. An ET nurse i n the h o s p i t a l was av a i l a b l e to change her stomal bar r i e r as necessary. Ms. A. f e l t that, aside from the stomal prolapse, having a stoma did not a f f e c t her pregnancy. She said, "Except for the prolapse the fact that I had a stoma and got pregnant didn't make any difference." She also thought that the joy of having her children was worth any discomfort she experienced during pregnancy. Conclusion. Ms. A.'s pregnancy was interrupted by two incidents of stomal prolapse, one requiring a laparotomy and surgical r e v i s i o n during pregnancy, the other requiring her to manually reduce her stoma as she gave b i r t h to her c h i l d . In addition, Ms. A. had to modify her pouching system to accommodate a larger stoma. These physiological e f f e c t s of the stoma on pregnancy gave r i s e to discomfort and caused concern 64 and inconvenience for both Ms. A. and her family. Despite these concerns, Ms. A. perceived her pregnancy to be a p o s i t i v e experience as she believed the joy of having a c h i l d was worth any discomfort or worry she had endured. Case 2 Ms. B. developed Crohn's Disease at the age of 34 and at 38 became pregnant with her f i r s t c h i l d . Her pregnancy progressed normally u n t i l 20 weeks gestation at which time she had a flare-up of Crohn's disease. She was admitted to hospital where her condition deteriorated, f i n a l l y necessitating an emergency sub-t o t a l colectomy with ileostomy for a bowel perforation. The following passage depicted her reaction to surgery. I think part of the problem i s that i t was emergency surgery ... I woke up and t h i s was the furthest thing from my mind ... to losing everything and waking up with an ileostomy. I didn't even know what [an ileostomy was]. In addition to being anxious about how to cope with a new ileostomy she and her partner were also concerned about the e f f e c t of surgery, anaesthetics, and medications on the fetus. Despite receiving follow-up care by an ET nurse and attending a l o c a l ostomy association support group 65 meeting, she did not f e e l prepared to cope with her ileostomy a f t e r discharge from ho s p i t a l . This viewpoint i s i l l u s t r a t e d i n the following quotation. Your day to day l i f e r e a l l y changes and no-one has a l o t of answers ... I always f e l t that when I came home with the ostomy they just sent me home and there was nothing after that, there was nothing. Fortunately, her husband provided tremendous emotional support and even took r e s p o n s i b i l i t y for the t e c h n i c a l aspects of stomal care, such as f i t t i n g and applying appropriate pouching systems. She had some concerns about the e f f e c t of the ileostomy on pregnancy but f e l t that she could not address these with her obstetrician as she sensed he did not think i t was a relevant issue. She said she would have "loved" to have talked to another woman with a stoma who had experienced pregnancy but never had the opportunity. She attended pre-natal classes and was too embarrassed to mention the stoma. At 2 6 weeks gestation she experienced abdominal pain and nausea and went to the Emergency Department at her community hosp i t a l . Suspecting an o b s t e t r i c a l complication, she was admitted to an o b s t e t r i c a l ward. This proved to be a disturbing experience, for on 66 admission, she was t o l d by a nurse that her stoma made her a " d i r t y patient" and she should not be there. She was then transferred to a t e r t i a r y care centre, where she stayed for several days. She was treated with analgesics but the cause of the pain was never diagnosed. She c a r r i e d the baby to term and, following a t r i a l of labour, had a Caesarean section of a healthy newborn. She described the Caesarean section as a "piece of cake" compared to her previous surgery. She was overwhelmed with emotion when the baby was born and made the following comment. As soon as I heard that f i r s t cry ... my heart j u s t broke and I thought "what have I put you through?". I t just made i t very r e a l . Her partner continued to a s s i s t with stomal care postpartum. Her o b s t e t r i c i a n reported that Ms. B had a smooth pre-natal course following her bowel surgery with ileostomy and he had no concerns about the e f f e c t of the stoma on the pregnancy or delivery. Ms. B. concluded that she did not f e e l her pregnancy had been a normal experience. She said, "The 67 whole pregnancy was just not normal, because i t s not normal to have [either surgery during pregnancy or an ileostomy] . 1 1 Conclusion. Ms. B.'s pregnancy was dramatically interrupted by a bowel perforation as a consequence of Crohn's disease. Following surgery with ileostomy she was faced with having to adapt to a new stoma while nurturing a pregnancy. These challenges were s t r e s s f u l for both Ms. B and her partner. She perceived her pregnancy to be abnormal and continues to f e e l upset about the trauma she and her c h i l d endured. Case 3 Ms. C. developed Crohn's disease at the age of 26. She became pregnant with her f i r s t c h i l d at the age of 3 0 and had an uneventful pregnancy. However, postpartum she had a flare-up of Crohn's disease and an eventual proctocolectomy with ileostomy. Approximately one year l a t e r , at the age of 32, she became pregnant with her second c h i l d . She had an uneventful pregnancy and did not need to modify any aspects of her stomal care. She did not think the stoma noticeably changed i n size during 68 pregnancy but commented that i t retracted postpartum and became d i f f i c u l t to pouch. It remains retracted and a source of concern. Although she did not think her t h i r s t increased during pregnancy, she explained that, regardless of pregnancy, she must drink at lea s t eight glasses of water a day to maintain adequate stomal function. She described t h i s as being the most d i f f i c u l t aspect of having a stoma. I don't have any problems with food, I know what I can't eat and i t s very few things ... but the hardest thing for me to do i s s i t down and take time to drink water. She was under the care of an ob s t e t r i c i a n during pregnancy and consequently said she had no concerns. Aside from her mother, who had a newly constructed stoma due to ulcerative c o l i t i s , she did not know another person with a stoma and consequently never talked to a woman with a stoma who had experienced pregnancy. She did not belong to an ostomy association and never attended pre-natal classes. She described her bowel surgery with ileostomy as a very p o s i t i v e experience for i t allowed her "to get [her] l i f e back" afte r having been so sick with Crohn's disease. She thought her husband had helped her to adapt to having a stoma because he re a d i l y accepted i t , 69 whereas she thought "some guys might think [the stoma is ] too weird or yucky" and would not be able to cope with i t . She thought i t also would be more d i f f i c u l t to acquire a stoma as a single person and subsequently have to explain i t to a new partner. At term Ms. C. had a Caesarean section for a healthy newborn. She did not require assistance with stomal care during h o s p i t a l i z a t i o n and concluded that the stoma did not have an ef f e c t on her pregnancy because "... i t s just part of me now." She and her partner both considered her second pregnancy to be f a r better than her f i r s t because she was able to care for her baby postpartum. With her f i r s t pregnancy she had been too i l l with Crohn's disease to do so. Her obste t r i c i a n , also, was not concerned about the e f f e c t of the stoma on pregnancy or delivery but was concerned that perineal scarring, as a r e s u l t of bowel surgery, would inte r f e r e with healing following vaginal delivery. He consequently elected to do a Caesarean section. Conclusion. Ms. C. did not suffer any physiological implications of having a stoma during pregnancy 70 although postpartum had to contend with a retracted stoma. She and her partner were both g r a t e f u l that she remained healthy throughout pregnancy and postpartum and consequently perceived the pregnancy to be a very p o s i t i v e experience. Case 4 Ms. D. was diagnosed with ulcerative c o l i t i s at the age of 25 and gave b i r t h to her f i r s t c h i l d at 34. Following delivery she had a flare-up of c o l i t i s and at the age of 35 underwent a sub-total colectomy with ileostomy. At surgery i t was determined that she had Crohn's disease rather than ulcerative c o l i t i s . At 3 7 she became pregnant with her second c h i l d . She f e l t well during pregnancy and was s t i l l e xercising at least three times weekly u n t i l 28 weeks gestation. She said, "I had a r e a l l y good pregnancy as far as I f e l t very good through my whole pregnancy ... and I wasn't si c k . " She reported two episodes of watery sto o l which she attributed to food blockages but did not know whether these were a r e s u l t of pregnancy or i f they would have occurred anyway. Both times drinking grape jui c e seemed to r e l i e v e the symptoms and she did not require medical treatment or h o s p i t a l i z a t i o n . She had to make some modifications to her pouching procedure. She needed to adjust the stomal opening on her skin b a r r i e r to accommodate a larger stoma as i t s diameter expanded from 25mm to 3 2mm during pregnancy. I t resumed i t s o r i g i n a l size postpartum. She also had to change the brand of skin b a r r i e r she was using because the adhesive backing caused skin i r r i t a t i o n . With respect to pre-natal care she made the following comment. The o b s t e t r i c i a n was very important i n the care of the fetus and the pregnancy i t s e l f but as f a r as the pregnancy with the ileostomy the ET nurse was my best resource. ET nurses gave her anecdotal accounts published by the Ostomy Quarterly about stomas and pregnancy and they arranged for her to tal k to a woman with a stoma who had experienced pregnancy. Although she appreciated t h i s opportunity i t also alarmed her because the woman had experienced two incidents of stomal prolapse during pregnancy. Although she attended pre-natal classes with her f i r s t pregnancy, she did not f e e l the need to do so with the second. She was not interested i n jo i n i n g an ostomy association, but did belong to the Society for In t e s t i n a l Research, an association for 72 in d i v i d u a l s with inflammatory bowel disease. Her main concerns about the ef f e c t of the stoma on pregnancy were whether stomal output would increase during labour and whether the stoma would prolapse during delivery. She also was concerned that the ho s p i t a l nurses would not have the expertise necessary to a s s i s t with stomal care i f she required i t . [I didn't know] how fam i l i a r every nurse on the f l o o r i s [with stomal care] because I know [nurses] get some t r a i n i n g i n i t but I found [when I had my bowel surgery] the two [ET nurses] took care of these sorts of issues, but the regular nurses were not that f a m i l i a r with the products ... and some of them were not h e l p f u l . She also mentioned, that although the ET nurses have expertise with stomal care, they are only available eight hours a day. Her partner reported being concerned about whether the stoma would in t e r f e r e with his wife's progress during labour and delivery and whether she might s u f f e r a flare-up of Crohn's disease. He suggested, however, that he always worried about a possible recurrence of Crohn's disease regardless of pregnancy. None of t h e i r fears materialized, however, and at term she had an uncomplicated spontaneous vaginal d e l i v e r y of a healthy newborn. In response to the 73 delivery, her partner said i t was " l i k e a cake walk" compared to the pain she had endured with Crohn's disease and bowel surgery. She did not need nursing assistance with stomal care and even emptied her own pouch during labour. Her o b s t e t r i c i a n did not have any concerns about the e f f e c t of the stoma on pregnancy and considered both the pregnancy and delivery to be unremarkable. She implied that her stoma had l i t t l e e f f e c t on her pregnancy because she f e l t she had adapted to having a stoma. The following quotation i l l u s t r a t e d t h i s viewpoint. I'd had my stoma for ... over a year and I was quite comfortable, after a year, a year seemed to be the turning point for me ... when I r e a l l y started to f e e l l i k e I could l i v e with i t . Conclusion. Ms. D. f e l t well during pregnancy and aside from two episodes of watery stool which she attributed to food blockages and some modifications to her pouching procedure for an enlarged stoma and a peristomal skin i r r i t a t i o n , had an uneventful pregnancy. Although she and her partner had some concerns regarding the e f f e c t of the stoma on pregnancy and h o s p i t a l i z a t i o n these fears never materialized. Her po s i t i v e attitude to the 74 stoma appeared to contribute to her perception that the stoma had l i t t l e e f f e c t on pregnancy. Case 5 Ms. E. developed Crohn's disease at the age of 20. At 24 years of age she had a sub-total colectomy with ileostomy and two years l a t e r , following a recurrence of Crohn's disease, had the remaining colon, apart from the rectum, excised. She was 27 years old when she became pregnant with her f i r s t c h i l d and 30 when she became pregnant with her second. The second pregnancy i s the one considered here. Her main concerns during pregnancy were whether she would experience a flare-up of Crohn's disease, whether she and the fetus would receive adequate nourishment as a consequence of her colectomy, and whether her baby would be born with Crohn's disease or some other bowel disease. She consulted with The United Ostomy Association for information about the ef f e c t of Crohn's disease and the stoma on pregnancy. They sent her some anecdotal accounts published by the Ostomy Quarterly and put her i n contact with a woman with an ileostomy who had experienced c h i l d b i r t h . Although she appreciated these 75 e f f o r t s , she s t i l l f e l t she lacked information. To deal with her concern regarding nourishment, she consulted with a d i e t i t i a n and supplemented her d i e t with vitamins and iron. Due to an increase i n t h i r s t she r aised her f l u i d s beyond her usual intake of two l i t r e s per day. Her stoma enlarged during pregnancy and she needed to increase the size of the stomal opening on her skin b a r r i e r . She also needed to increase the frequency of changing the skin ba r r i e r because she f e l t the seal on the skin b a r r i e r weakened more re a d i l y since her protruding abdomen could not support the weight of the pouch. At 32 weeks gestation she experienced a " r e a l l y bad" bowel obstruction. She was hospi t a l i z e d and af t e r three days of bowel rest the obstruction spontaneously resolved. Her obste t r i c i a n could not say whether her enlarged uterus contributed to the obstruction or i f i t would have occurred regardless of the pregnancy. To prevent further problems she alt e r e d her d i e t to include smaller more frequent meals and a further increase i n f l u i d s . Her obstetrician's main concerns during pregnancy 76 were whether a flare-up of Crohn's disease would occur and whether the presence of a rectovaginal f i s t u l a would i n t e r f e r e with delivery. She thought the f i s t u l a might be traumatized by a vaginal delivery and that i t also might i n t e r f e r e with the healing of the perineal f l o o r . Therefore at term Ms. E. had an e l e c t i v e Caesarean section for a healthy newborn. Compared to the ostomy surgery, she said the Caesarean section "was so easy". During h o s p i t a l i z a t i o n she did her own stomal care except for one occasion when a nurse emptied her pouch while she was i n the recovery room. In response to t h i s assistance she laughingly observed, "[the nurse] didn't have a clue of what she was doing". On a more serious note, however, she commented that a nurse, unaware that laxatives are contra-indicated for individuals with ileostomies, t r i e d to administer to her a routine laxative suppository i n preparation for her Caesarean section. She thought her partner and her o b s t e t r i c i a n were very supportive throughout the pregnancy. Regarding the o b s t e t r i c i a n she said, "she included me i n everything ... she made me f e e l part of i t . " 77 She stated that she gained a "sense of pride" from her childbearing experiences. The following statement r e f l e c t s t h i s sentiment. After having been sick for so long and going through a l l that surgery and pain and agony and drugs and everything and being able to look at [my children] ... I mean a l o t of people figured I'd never have kids ... and being able to have them and say I know I did t h i s . She claimed she was glad she had bowel surgery and the ileostomy because without them she would never have been able to f u l f i l her l i f e l o n g ambition to have children. She said, "I've got two healthy kids and that's, that was a l l that mattered, that was my j u s t i f i c a t i o n for everything I went through." Conclusion. Ms. E.'s pregnancy was interrupted by one episode of bowel obstruction requiring h o s p i t a l i z a t i o n and medical management. She subsequently had to modify her f l u i d intake and eating patterns and as a r e s u l t of an enlarged stoma and a protruding abdomen had to modify her pouching procedure. As a consequence of Crohn's disease she had a Caesarean section. Despite discomforts she endured, modifications she had to make, or concerns she had about the e f f e c t of the stoma on pregnancy, she was grateful that her ileostomy had 78 provided her with an opportunity to have children. Case 6 Ms. F. developed Crohn's disease when she was s i x years old. At the age of 10 she had a t o t a l proctocolectomy with ileostomy. She became pregnant with her f i r s t c h i l d at the age of 24. Aside from periodic episodes of nausea and general discomfort, her pregnancy progressed normally u n t i l 16 weeks gestation, at which time her stoma suddenly prolapsed about six inches. She r e c a l l e d being at work as a cashier when t h i s occurred and f e e l i n g both shocked and t e r r i f i e d . I n i t i a l l y conservative measures, such as wearing a tensor around the stoma when up or remaining supine, were taken to reduce i t , but at 28 weeks she was hospitalized for a l o c a l r e v i s i o n . She and her partner were both concerned about the e f f e c t the medications, the anaesthetic, and the surgery would have on the fetus but the attending physicians were able to a l l a y t h e i r fears. She did her own stomal care during h o s p i t a l i z a t i o n and implied she preferred to do so. She said, 11 [Nurses] r a r e l y ever bother me when I'm i n [the h o s p i t a l ] . " Her stoma also enlarged i n diameter and 79 necessitated a larger stomal opening i n the skin b a r r i e r . Due to an increase i n t h i r s t she also modified her di e t to increase f l u i d intake. She attended one pre-natal class pertaining to Caesarean sections when she thought she may have t h i s mode of delivery. She did not belong to an ostomy association and never did any reading on the subject of stomas and pregnancy. She said she did not f e e l she needed any information because "I've had i t so long, ... l i k e you know i t s nothing to me r e a l l y . " She did, however, t a l k to another woman with a stoma who had experienced pregnancy. This woman had also experienced a prolapsed stoma during pregnancy. Her obstetrician's main concern was the possible recurrence of a stomal prolapse during delivery. She wanted to avoid pressure on the stoma during the second stage of labour and she also wanted to avoid a Caesarean section due to the r i s k of bowel adhesions. She therefore elected to do a vaginal delivery and two weeks before her due date Ms. F. was admitted to hos p i t a l to have induction of labour. She was given an epidural anaesthetic and following a 26 hour labour, had an episiotomy and a forceps delivery. Immediately 80 postpartum the baby developed a fever and was taken to an intensive care nursery, where he stayed for several days. She f e l t " r e a l l y , r e a l l y bad" about t h i s and responsible for his condition. She described the episiotomy as being "very p a i n f u l " and said she f e l t l i k e she had been "kicked by a boot". She did her own stomal care during h o s p i t a l i z a t i o n . She described being amazed that she had given b i r t h to " t h i s r e a l l y healthy great guy" af t e r having been i l l with Crohn's disease for so much of her l i f e . She admitted, though, that she and her husband continue to worry that t h e i r son may someday get Crohn's disease. Conclusion. Ms. F.'s pregnancy was interrupted by one episode of stomal prolapse which required her to be hos p i t a l i z e d and undergo surgery during pregnancy. This created concern for both her and her partner and alter e d her delivery. Other physiological e f f e c t s of the stoma on pregnancy which required modifications to be made included an enlarged stoma and an increased t h i r s t . Despite any inconveniences and concerns, Ms. F. was gr a t e f u l her stoma had provided her with an 81 opportunity to have a healthy c h i l d . Summary of Individual Reports. Data c o l l e c t i o n procedures were r e p l i c a t e d f o r each case and the findings reviewed and summarized into s i x i n d i v i d u a l case reports. Although the pa r t i c i p a n t s often implied the stoma had l i t t l e e f f e c t on pregnancy, a review of the data i n r e l a t i o n to Snyder's (1979) conceptual framework, suggested that the stoma did, i n fact , a f f e c t each childbearing experience. Physiological implications of having a stoma during pregnancy constantly interacted with the woman's s e l f system and family system and with her s o c i a l and c u l t u r a l environment to create a unique experience for each woman. For some, the presence of a stoma produced unpleasant physiological complications and psychosocial concerns, but for a l l , i t provided an opportunity to have and care for children, an experience they may otherwise not have had. Issues i d e n t i f i e d i n each study w i l l be expanded and compared i n a cross-case report. , Cross-Case Report The findings from the six ind i v i d u a l case studies are expanded and grouped according to Snyder's (1979) 82 childbearing framework into the physiological, the s e l f , the family, the s o c i a l , and the c u l t u r a l systems and a comparison made across the cases. Although each system i s addressed separately i t w i l l be considered i n l i g h t of how i t interacts with the others. Physiological System The physiological system represents the phy s i o l o g i c a l adaptations to pregnancy. An analysis of the case studies revealed that a l l the women had ileostomies, with one being the consequence of ul c e r a t i v e c o l i t i s and the others, consequences of Crohn's disease. There were no reports of recurrences of Crohn's disease, however, after ileostomy. Despite a l l d e l i v e r i n g healthy babies, the women a l l experienced physiological implications of having a stoma during pregnancy. Stomal prolapses. Two women experienced stomal prolapses during pregnancy. In one case the prolapse occurred at 20 weeks gestation and, aft e r a surgical r e v i s i o n , recurred at 36 weeks. The same woman had experienced two stomal prolapses with her f i r s t pregnancy. In the other case, the stoma also prolapsed at 20 weeks 83 gestation. The prolapses caused discomfort, inconvenience, and alarm for both the women and t h e i r partners. In addition, they required the women to undergo surgery during pregnancy. In both cases the women were unprepared for such a complication and t e r r i f i e d when i t f i r s t occurred. The two narratives below i l l u s t r a t e d t h i s experience. With the f i r s t one I remember my overwhelming sense was nobody warned me of any complications of becoming pregnant, ... that I could have any problems whatsoever with a stoma. I mean I found out what a prolapse was after I prolapsed. I was te r r o r struck, i t was just a h o r r i f y i n g experience. That's the fe e l i n g that won't go away. I went i n the washroom and I just l i k e freaked r i g h t out ... l i k e I've had my ileostomy for fourteen years before that and never seen anything l i k e that. One partner implied that his fear was enhanced by the fa c t that very l i t t l e i s known about the implications of stomal prolapse during pregnancy. He said, "Even the doctors were not fa m i l i a r with i t happening during pregnancy". In attempts to avoid r e v i s i o n surgery, conservative measures were i n i t i a l l y taken i n both instances to reduce the prolapses. Lying down or strapping a wide tensor around the stoma when up, 84 helped to reduce i t but the women found the measures inconvenient and uncomfortable. As one woman said, "you don't want anything t i g h t on [when you're pregnant]" and the tensor needed to be frequently released i n order for the stoma to function. The c i t a t i o n below depicted the discomfort and inconvenience the women endured. I t was l i k e being semi-blocked.... I would just s i t down and relax ... or lay back i n sort of more of a r e c l i n i n g position and l e t i t just flow and then I'd strap up again i n order to be mobile. Both women eventually needed to be ho s p i t a l i z e d for s u r g i c a l r e v i s i o n . This placed an added s t r a i n on the f a m i l i e s . Obstructions. Three women reported p a r t i a l or complete bowel obstructions. These gave r i s e to feelings of confusion, discomfort, a need to modify di e t s , and i n two instances, h o s p i t a l i z a t i o n during pregnancy. In a l l cases the obstructions presented with abdominal discomfort and altered stomal output. One woman described how a modification to her di e t helped to resolve the obstruction. I possibly had two episodes where there was somewhat of a blockage meaning that my st o o l was r e a l l y watery so that I knew that something wasn't 85 quite r i g h t but they both cleared on t h e i r own, act u a l l y I drink grape juice and i t helps usually. Two women required h o s p i t a l i z a t i o n and i n both cases d i f f i c u l t y occurred with d i f f e r e n t i a t i n g the pain from labour pain. One woman described how the pain was i n i t i a l l y a generalized discomfort occurring i n conjunction with abdominal pressure. I t eventually l o c a l i z e d proximal to the stoma and she therefore concluded she had developed a bowel obstruction. In the other case the hospital s t a f f also appeared uncertain about the diagnosis and admitted the woman to an o b s t e t r i c a l ward. In both cases the obstructions were managed conservatively with analgesics, and i n one case intravenous f l u i d s . Also, i n both cases the physicians were uncertain whether the enlarged uterus contributed to the obstruction or whether the obstructions would have occurred regardless of pregnancy. In one case the woman related the obstruction to eating an excessive amount of bread s t u f f i n g and drinking inadequate f l u i d s . To prevent further problems she modified her di e t to include smaller and more frequent meals and more f l u i d s . 86 A l t e r a t i o n s i n stomal size and peristomal skin i r r i t a t i o n . Four women reported that the base of t h e i r stomas enlarged i n diameter during pregnancy requiring modifications to pouching procedures. One woman described the f r u s t r a t i o n that was associated with t h i s change. Other than [the obstructions] the most f r u s t r a t i n g thing was changing my stoma [ s i z e ] . After my f i f t h month of gestation I started to change, l i k e the actual shape of the stoma on the skin, the siz e ... i t enlarged s l i g h t l y . A l l the stomas, however, returned to t h e i r o r i g i n a l s i z e following delivery. One woman reported that she never noticed any changes to her stoma during pregnancy but that i t retracted following delivery and has remained that way. She attributed t h i s to a weight gain of f i f t y pounds during pregnancy and i t s eventual loss postpartum. One woman had to change her brand of ostomy products during pregnancy for she observed that the adhesive tape on the skin barrier was i r r i t a t i n g her skin. Diet. Although most women noted a need to increase f l u i d 87 consumption since bowel surgery with ileostomy i n order to s a t i s f y t h i r s t and to prevent food blockages, only two r e c a l l e d a further increase i n t h i r s t during pregnancy with a need to drink more f l u i d s . The following quotation i l l u s t r a t e d how t h i r s t y one woman was. When I'm pregnant I drink l i k e mass quantities of f l u i d , I drink l o t s anyways but when I was pregnant I found that I was just l i k e a bottomless p i t f or water. Unfortunately t h i s women experienced a food blockage and to prevent further problems she again adjusted her di e t to include more f l u i d s and smaller, more frequent meals. Mode of delivery. Three women had vaginal d e l i v e r i e s and three had Caesarean sections. With respect to the women who had vaginal d e l i v e r i e s , one who had required a s u r g i c a l r e v i s i o n of a stomal prolapse during pregnancy, had an epidural and forceps delivery to prevent a repeat prolapse and another, whose stoma was prolapsed at the time of delivery, had to use her hand to reduce the stoma during delivery. The following quotation described how she coped with c h i l d b i r t h . One hand was on the nitrous mask and the 88 other hand was on the stoma holding i t down b a s i c a l l y i s how I delivered. Three other women had Caesarean sections, one for an o b s t e t r i c a l reason ( f a i l u r e to progress), one due to perineal scarring as a consequence of a proctocolectomy, and the other due to the presence of a rectovaginal f i s t u l a as a consequence of Crohn's disease. A l l three women who experienced Caesarean section viewed i t i n r e l a t i o n to previous bowel surgery and considered i t to be a "piece of cake" i n comparison. Conclusion. A l l the women experienced physiological consequences of having a stoma during pregnancy, necessitating adaptation. Two women suffered stomal prolapses, three experienced some degree of bowel obstruction, f i v e reported altered stomal sizes and shapes, one complained of a peristomal skin i r r i t a t i o n , and two acknowledged increased t h i r s t . Despite these p h y s i o l o g i c a l implications, a l l had healthy babies. The findings reveal that complications such as stomal prolapse and bowel obstruction can cause discomfort, h o s p i t a l i z a t i o n , surgery, complicated d e l i v e r i e s , and fear and inconvenience for both the 89 woman and her family. The findings also reveal that pregnant women may need to modify t h e i r pouching procedures to accommodate larger stomas and may need to ra i s e f l u i d intake to s a t i s f y an increased t h i r s t . S e lf System The woman's s e l f system i s concerned with her emotional adaptation to pregnancy. The a b i l i t y to emotionally adapt to pregnancy w i l l be influenced by a multitude of factors s p e c i f i c to each i n d i v i d u a l experience. An analysis of the case studies revealed that factors a f f e c t i n g the women's a b i l i t y to adapt to pregnancy with a stoma were her perceptions of having a stoma and the concerns i t generated. These concerns rel a t e d to personal concerns and concerns about the health of the fetus and of the c h i l d postpartum. Perceptions of having a stoma. I t appeared that the women's perceptions of the e f f e c t of the stoma on pregnancy were influenced by whether they perceived the stoma as improving t h e i r health status and quality of l i f e . Five women had been i l l f or a considerable length of time p r i o r to bowel surgery with ileostomy and had subsequently experienced an improvement i n health. Two of these women suggested 90 that the stoma had provided them with an opportunity to have ch i l d r e n or to care for t h e i r c h i l d . The following narratives i l l u s t r a t e d t h i s viewpoint. I wouldn't have had [children] i f I hadn't had surgery ... because I was on so many drugs l i k e there was no way that I would put a [fetus] through that. One woman, p r i o r to her surgery with ileostomy, had been too sick with Crohn's disease to care f o r her f i r s t baby. However, afte r bowel surgery with ileostomy she was able to care for her second baby. She said: With the f i r s t [baby] I couldn't take care of her because I was too sick ... so I wanted to make sure I got i n the time with the second one that I missed with the f i r s t . In one case, however, a woman, who had required emergency bowel surgery with ileostomy during pregnancy and had not recently been i l l with Crohn's disease, f e l t that the stoma had interfered with her childbearing experience. Personal concerns. Concerns were expressed about whether the stoma would i n t e r f e r e with pregnancy; whether adequate assistance with stomal care would be provided during h o s p i t a l i z a t i o n ; and whether a flare-up of Crohn's disease would occur during pregnancy. Three women expressed concerns that the stoma, i t s e l f , would in t e r f e r e with pregnancy. Two were concerned that i t might prolapse either during pregnancy or labour. One woman had experienced stomal prolapse with a previous pregnancy and the other had talked to someone else who had experienced t h i s during pregnancy. In both cases, t h e i r anxiety was increased due to lack of knowledge about the subject. The following statement i l l u s t r a t e d t h i s concern. [Stomal prolapse] was one of the things I was worried about because no-one seemed to know that much and I thought boy am I going to prolapse while I'm delivering? I was r e a l l y concerned about the contractions and that i t might [prolapse], but i t didn't do anything . The concern that the bowel would become "spastic" and y i e l d a high output of stool during labour was another concern expressed. F i n a l l y one woman implied that "not knowing" about the impact of the stoma on pregnancy was a concern i n i t s e l f . I mean I had these missing pieces and even though they're not the pieces that have to do with having kids, i s my body s t i l l going to be able to [work]? In addition to worrying about the stoma i n t e r f e r i n g with the progress of labour three women also worried that the nursing s t a f f would not have the 92 expertise or the necessary products to a s s i s t them with technical aspects of stomal care when they were ho s p i t a l i z e d . One woman who needed to have a laparotomy and re v i s i o n of a stomal prolapse had worried that the nursing s t a f f on the o b s t e t r i c a l ward would not be able to a s s i s t her post-operatively. As i t turned out, she was able to explain to the nurses how and when to empty her pouch and to arrange for an ET nurse who worked i n the hospital to change her skin b a r r i e r . Another had worried that the nurses would not know how to empty her pouch during labour. In t h i s s i t u a t i o n , the woman proved not to need any assistance with stomal care during labour. F i n a l l y , one woman worried that she would not have access to appropriate ostomy products and wanted to caution other women with stomas to take an ample supply of t h e i r own products to the h o s p i t a l . The concern that pregnancy might i n c i t e Crohn's disease was expressed by one woman. She stated: Even though i t s s t i l l i n remission i t s s t i l l there, i t s not l i k e i t s gone so ... i s [the pregnancy] going to cause the Crohn's to come up? Despite t h i s fear, she never did experience a relapse. In fact, a relapse occurred i n only one case, 93 and here the woman had not had previous bowel surgery. When i t occurred, at 20 weeks gestation, she required a sub-total colectomy with ileostomy. Following the surgery she did not have any further relapses for the balance of her pregnancy. Concerns about the fetus. Concerns were expressed about whether the fetus would be affected by the absence of the colon or by surgery during pregnancy. The f i r s t concern was expressed by one woman and the following statement i l l u s t r a t e d her concern. Because I'm missing a l l t h i s bowel, am I s t i l l going to be able to nourish the baby properly and am I going to be nourished properly and i s he going to get everything he needs? A l l three women who required surgery and one who required h o s p i t a l i z a t i o n and medical management during pregnancy described being concerned about how the medications, or the anaesthetic, or the surgery would a f f e c t the fetus. For instance one woman said: I used to have nightmares that he had g i r a f f e s i z e legs or green horns because I just thought of everything that I had gone through. This same woman said that she began to f e e l that perhaps her purpose i n l i f e was "to have some baby with a d i s a b i l i t y . " She never verbalized t h i s concern 94 at the time, however, due to the fear that i f she did, i t would come true. Another woman who had also required surgery during pregnancy expressed the following reaction to her baby being born with a high fever, necessitating admission to an intensive care nursery: "I f e l t r e a l l y , r e a l l y bad, I thought i t was something I did." This comment moved the woman to tears as i t reminded her of the sorrow she had experienced at the time of delivery. Concerns about t h e i r children. Three women expressed concern at the time of t h e i r interviews about whether t h e i r children may have inherited Crohn's disease. This concern i s expressed i n the following quotations. The only thing you worry about now though with having kids i s passing [Crohn's disease] down onto them. Because my mother's mother had the d i v e r t i c u l i t i s , my mother had the c o l i t i s and I got the worst out of them, Crohn's. There's always going to be that l i t t l e spot i n my head where [my husband] and I both ever wonder i f he's ever going to get Crohn's. ... and i s he going to be born with Crohn's or some other bowel disease or the unknown, l i k e not knowing. Although the concern that the children may develop Crohn's disease i s not d i r e c t l y related to having a 95 stoma, i t i s i n d i r e c t l y related, as Crohn's disease i s the usual i n d i c a t i o n for stomas in women of childbearing age. Conclusion. An analysis of the findings reveal that two women expressed gratitude that the stoma had provided them with an opportunity to either have children or to care for them. Concerns raised by the women were phy s i o l o g i c a l , psychosocial, or c u l t u r a l i n nature and had implications for both themselves and t h e i r family. They expressed concerns regarding whether the stoma would i n t e r f e r e with pregnancy; whether adequate assistance would be provided during h o s p i t a l i z a t i o n ; and whether flare-ups of Crohn's disease would occur. They also expressed concerns about the e f f e c t surgery and the absence of colon could have on the fetus. In addition, they worried that t h e i r children may develop Crohn's disease. A common theme i n these self-reported causes of anxiety were a lack of knowledge and a fear of the unknown. Family System The family system i s concerned with the network of s i g n i f i c a n t family members involved with the 9 6 childbearing experience. The structure and dynamics of these interpersonal relationships w i l l a f f e c t the childbearing experience and conversely the childbearing experience w i l l a f f e c t the relationships. An analysis of the case studies revealed that the f i v e partners who par t i c i p a t e d i n the study a l l had concerns about t h e i r wives' pregnancies. I t also implied that h o s p i t a l i z a t i o n during pregnancy placed an added s t r a i n on both the women and t h e i r families. F i n a l l y , i t disclosed that a l l the women considered t h e i r partners to be important sources of emotional support. Partners' concerns. Four of the f i v e partners interviewed i n the study stated they had been concerned about t h e i r wives' health during pregnancy. There were several sources for concern and these included stomal complications, relapses of Crohn's disease, and surgery during pregnancy. Two partners whose wives developed stomal prolapses worried about the physiological and the psychosocial implications these would have. They did not understand the cause of the prolapses nor t h e i r e f f e c t on t h e i r wives' health, plus they worried about 97 the discomfort and inconvenience they caused. Another partner claimed he worried that h i s wife would have a relapse of Crohn's disease during pregnancy. He reported: But I s t i l l worry about [Crohn's disease], I mean I'm always going to worry about i t , i t s not something that just because she's pregnant, or whatever, i t s every time she gets t i r e d or she gets ... sick or anything, you know I worry about i t happening because she spent so much time i n the ho s p i t a l since we've been married. This same partner intimated that his anxieties were heightened by his lack of information. He asserted that, he had been more concerned at the beginning of the pregnancy because he "didn't know anything" about stomas and pregnancy and he had worried that the stoma might not "stand up" to the pregnancy and delivery. His wife, however, had been able to provide him with enough information to a l l e v i a t e most of h i s fears. The partner whose wife needed to have an emergency sub-total colectomy at 20 weeks gestation had i n i t i a l l y worried whether his wife would survive surgery and continued to worry throughout the pregnancy about her compromised state of health. Two partners implied they had fewer concerns about t h e i r wives' health status with the pregnancy under 98 consideration than they had with the previous one because with the previous pregnancy t h e i r wives had been very i l l with Crohn's disease. One said: She did a l o t better with [this] one than she did before so i t was actually less of a worry for me because she didn't spend any time i n the ho s p i t a l t h i s time. A l l the partners who expressed concerns implied that t h e i r concerns were reduced when they were provided with information about the issue. H o s p i t a l i z a t i o n . H o s p i t a l i z a t i o n , and i n three cases subsequent surgery, placed an added s t r a i n on the women and t h e i r f a m i l i e s . A l l of the women who had to have surgery during pregnancy and t h e i r partners professed to have worried about the health of the fetus. They had fr e t t e d about the e f f e c t that the medications, anaesthetics, and surgery would have on the fetus. One of the women also alluded to the fac t that h o s p i t a l i z a t i o n and not the stoma had int e r f e r e d with her r o l e as a mother because i t meant she had to make alternate arrangements for the care of another c h i l d at home. The following narrative demonstrated t h i s . I t makes absolutely no difference whether I have a stoma or no stoma i n how I care for l i t t l e ones, what interfered for me was the surgery ... that 99 would i n t e r f e r e with anybody. Partners' support• A l l of the women reported that t h e i r partners had been very supportive throughout pregnancy and del i v e r y . One woman reported: Another important thing i s a supportive partner because he was i n there through the whole thing ... he was there for both d e l i v e r i e s and my ultrasound. Another woman noted that her partner had ass i s t e d her with stomal care throughout pregnancy. The following account described his involvement. When I started to get bigger because of the pregnancy I couldn't see what I was doing, ... so I couldn't [put on my own pouch]... he would have to do everything, I would just go and l i e on the bed and he'd ... just do i t a l l . Conclusion. Concerns expressed by the partners were mainly p h y s i o l o g i c a l i n o r i g i n and related to incidents of stomal complications, possible flare-ups of Crohn's disease, and the ef f e c t of surgery, anaesthetics, and medications on the fetus. There seemed to be a d i r e c t r e l a t i o n s h i p between the degree of the partner 1s concern and his wife's health status. That i s , i f the woman f e l t well, her partner would have fewer concerns. However, as one partner suggested, because Crohn's 100 disease i s chronic i n nature there i s always the pot e n t i a l for worry. Lack of knowledge and fear of the unknown i n t e n s i f i e d these concerns. A l l the women considered t h e i r partners to be important sources of emotional support. So c i a l System The childbearing experience takes place within a s o c i a l system which includes such groups as the community where the woman l i v e s and the organizations where she receives care. A l l such s o c i a l groups w i l l a f f e c t the childbearing experience. A review of the case studies revealed that women and t h e i r partners sought support during pregnancy from physicians, nurses, ET nurses, a d i e t i c i a n , pre-natal classes, and the United Ostomy Association (UOA). Physicians. A l l the physicians were considered h e l p f u l with respect to o b s t e t r i c a l issues and some were also very supportive with respect to stomal concerns. Three women implied that, of a l l the health care providers they had contact with, physicians were the ones who had provided them with the most support during pregnancy. Their knowledge and t h e i r a b i l i t y and int e r e s t to share 101 t h i s knowledge helped to reduce anxiety. The following narratives i l l u s t r a t e d t h i s viewpoint. I guess I wasn't too concerned because I knew I was c l o s e l y being watched by the ob s t e t r i c i a n . I had a l l my f a i t h i n him and I r e a l l y l i k e d him, I f e l t very comfortable with him. I had every confidence i n her and that alone was, I mean the biggest, the biggest plus because as soon as something came up she would say to me I'm not sure about t h i s , I'm going to f i n d out ... anything that I wasn't sure of I would ask her and she would either give me the answer or say I don't know but I ' l l f i n d out ... so I mean she was, she was the best thing of a scary s i t u a t i o n . The t h i r d woman implied that her physician, i n addition to providing information about stomal management, also included her i n a l l decision-making. Both partners whose wives had undergone surgery during pregnancy for stomal prolapses, also reported that physicians substantially reduced t h e i r fears. The following quotation demonstrated how physicians were able to r e l i e v e one partner's fears. They didn't rush, they talked i t over a l o t , they went over a l l the options ... they kept the family doctor informed. The [anaesthetist] sat down and explained to us about the drugs. Two other women, however, f e l t that although t h e i r physicians had cl o s e l y monitored the fetus, they had not been able to provide the support they needed regarding t h e i r ileostomy. One woman lamented: 1 0 2 Everybody knew [the stoma] was there but even when I went for my checkups ... nobody ever asked me, how I was doing with the ileostomy. If I went fo r a checkup for my pregnancy I was d e f i n i t e l y there for the pregnancy.... I would sometimes l i k e to t a l k about a couple of things but that wasn't r e a l l y i n t h e i r [area]. Another recommended that individuals with stomas should seek alternate forms of support i f they f e e l t h e i r physicians are unable to help them. She made the following comment. If you're not getting the answer from your doctor don't think that that's your f i n a l resource. Find someone who can help you, f i n d the r i g h t person to help you with the problem. The physicians' main concerns regarding the e f f e c t of stoma on pregnancy were related to ph y s i o l o g i c a l issues. Concerns were expressed about the management of stomal prolapse and the most appropriate mode of delivery. Only one physician r e c a l l e d being concerned about the possible recurrence of Crohn's disease. Hospital nurses. A l l the women had the impression that o b s t e t r i c a l nurses were concerned s o l e l y with o b s t e t r i c a l issues. The following remark i l l u s t r a t e d t h i s viewpoint. The nurses stayed r i g h t away from me... [they] didn't have a clue.... They dealt with what they knew about which was the baby. Another woman maintained, "The baby s t u f f i s more 103 important, more concern than I [am]." However, she implied she was comfortable with t h i s notion. One woman who had a laparotomy one week postpartum, complained that the nurses on the o b s t e t r i c a l ward were not aware of her s u r g i c a l needs. She contended: That's where the OB ward f a l l s apart because they 1 re not used to ... the kind of surgery I had ... i t i s much easier to be a su r g i c a l patient on a s u r g i c a l ward. Only three women required nursing assistance with stomal care during h o s p i t a l i z a t i o n for c h i l d b i r t h , and a l l three implied that the nurses did not have adequate s k i l l s to a s s i s t them. One woman said, "One of the nurses i n recovery had to empty [my pouch]...and she didn't have a clue what she was doing." In addition to not knowing how to do techn i c a l aspects of stomal care, one implied that nurses lacked knowledge about the physiological implications of an ileostomy. She described becoming alarmed when a nurse wanted to administer a routine laxative suppository i n preparation for a Caesarean section and another wanted to adminster one post-operatively. I t disturbed her that neither nurses were aware that she had an ileostomy and that laxatives are contraindicated for 104 i n d i v i d u a l s with ileostomies. Further, two implied that nurses found stomas disagreeable. One remarked, "There are some nurses who are t o t a l l y a f r a i d of i t and won't come near you with a ten foot pole." She went on to rel a t e how she could usually sense t h e i r reluctance to provide assistance. She said, "The body language gives i t away, they don't want to do i t . " On another occasion a woman was admitted to an o b s t e t r i c a l ward at 26 weeks gestation with undiagnosed pain and was t o l d she should not be there. She described the following scene. [The nurse] proceeded to t e l l me that I wasn't welcome there, I was considered to be a d i r t y patient and they're going to have to get me out of maternity r i g h t away. I just f e l t absolutely t e r r i b l e , I f e l t l i k e the d i r t i e s t person. However, t h i s lack of expertise with respect to stomal care seemed to extend beyond the o b s t e t r i c a l ward. A l l the woman had experienced numerous ho s p i t a l i z a t i o n s p r i o r to c h i l d b i r t h and some implied that nurses i n general lacked adequate s k i l l s . The following statement exemplified t h i s impression. There are very few nurses who know, there are very few doctors, anybody who knows anything about i t ... each time I've gone i n I've gone i n having to educate anybody who has come near me because 105 they're just not fam i l i a r with i t . Another woman s t i l l appeared upset three years following bowel surgery with ileostomy because nurses on a general s u r g i c a l ward had not been able to tend to her stomal needs. She attributed t h e i r lack of s k i l l s to t h e i r lack of experience. She remarked: I found that because they had two [ET nurses] who came around and took care of these sort of issues, the regular nurses were not that f a m i l i a r with the products ... and some of them were not h e l p f u l . ET nurses. Although nurses, i n general, were not considered to be se n s i t i v e or knowledgeable about stomal management, two women claimed that ET nurses had been h e l p f u l . As one woman asserted: The o b s t e t r i c i a n was very important i n the care of the fetus and the pregnancy i t s e l f but as f a r as the pregnancy with the ileostomy the ET nurse was my best resource. Another woman said, "The ET nurse i s b a s i c a l l y the knowledgeable person and that's i t . " Enterostomal therapy nurses provided information about a l l aspects of stomal care; assisted with technical aspects of stomal care during h o s p i t a l i z a t i o n , such as changing pouches and ba r r i e r s ; supplied published anecdotal accounts on stomas and pregnancy; and arranged v i s i t s 106 with women with stomas who had experienced pregnancy. D i e t i c i a n . Only one woman sought advice from a d i e t i c i a n during pregnancy. In t h i s case the woman had been alarmed that the absence of colon might i n t e r f e r e with her n u t r i t i o n a l requirements and wanted advice regarding the need for additional nutrients. She consequently supplemented her die t with vitamins and iro n . Pre-natal classes. Although three women attended pre-natal classes i n preparation for c h i l d b i r t h , none raised the issue of having a stoma. One woman suggested she had been too embarrassed to discuss the issue. She remarked, "How can you explain es p e c i a l l y to young people the ostomy and I s t i l l f e e l I have a r e a l l y , almost a negative connotation. 1 1 United Ostomy Association. A l l the women, with the exception of one, received assistance from the UOA during pregnancy, despite the fac t that only two were members. The UOA issued four women with anecdotal accounts about stomas and pregnancy and also arranged for three to have a v i s i t 107 from a woman with a stoma who had experienced pregnancy. Although most of the women appreciated reading the a r t i c l e s , two complained that they only described personal accounts of selected aspects of pregnancy. The following narrative suggested one woman's d i s s a t i s f a c t i o n . They sent me an a r t i c l e , a few a r t i c l e s ... but they weren't r e a l l y much help. I mean there was a lady that had a baby so she wrote herself, her own experiences but I mean ... a l l i t talked about was her own [experience] l i k e i t [did not] answer questions.... There [were no] references where I could go [to f i n d out ] what can I expect with [pregnancy] ... there was nothing. The three who talked with a v i s i t o r expressed gratitude as they f e l t the v i s i t o r was able to understand t h e i r concerns. One woman said, " I t was kind of neat [to t a l k to her because] she understood the prolapse part and not being able to get up". Two women, however, suggested that although they appreciated t a l k i n g to the v i s i t o r , they would have appreciated an opportunity to tal k to several women, rather than only one, to gain a broader perspective. The women who did not have an opportunity to speak to a v i s i t o r , conveyed t h e i r regret. One woman i n the study was already a UOA v i s i t o r 108 for women with stomas who were either pregnant or contemplating pregnancy and three reported they would l i k e to do the same. They f e l t they could provide others, l i k e themselves, with support during pregnancy. Although a l l the woman were keen to t a l k to another woman with a stoma who had experienced pregnancy most also expressed an intere s t to t a l k to another i n d i v i d u a l with a stoma about t h e i r bowel surgery or d a i l y implications of l i v i n g with a stoma. One woman said, "I would have loved to [have talked to a woman with a stoma during my pregnancy], I would s t i l l [ l i k e to tal k to another woman with a stoma]." Another woman made the following comment. Anything I can do for the next person to help them to you know, get through [the surgery], I'm more than w i l l i n g to be there and say ... I've done i t and you can do i t . A l l the woman appeared eager to share t h e i r experiences with the researcher. Conclusion. Health care professionals such as physicians, nurses, and d i e t i c i a n s , and support groups provided care for these women during pregnancy. A l l had an e f f e c t on the childbearing experience. Some were able to provide information and expert care and consequently 109 help to reduce fears. However, sometimes the information was inadequate or the care less than desirable and i n these situations fears were i n t e n s i f i e d . In most situations the women had to seek t h e i r own support and assistance and devise ways to f a c i l i t a t e a po s i t i v e childbearing experience. C u l t u r a l System The c u l t u r a l system i s the structure within which the ph y s i o l o g i c a l , s e l f , family, and s o c i a l systems operate. In t h i s study, culture includes the attitudes and values held by society i n r e l a t i o n to childbearing and stomas. These values provided the framework fo r the woman and her partner to define and evaluate t h e i r p a r t i c u l a r childbearing experience. Although several women suggested t h e i r stomas had l i t t l e e f f e c t on t h e i r pregnancies, others suggested i t set them apart from others. This sentiment was revealed by one woman when she said she had been planning to work during pregnancy "up u n t i l [when] normal people [work]". Another described f e e l i n g too self-conscious to disclose her stoma to her pre-natal i n s t r u c t o r . One woman described her perceptions of how 110 others reacted to her stoma. I don't think [the nurses] thought I was normal or that [the stoma] was normal and probably because of ignorance [nurses] don't know about i t . A l l the women expressed joy at being able to give b i r t h to a healthy baby, but one woman also suggested that childbearing provided her with an opportunity to f e e l l i k e other women. The following narrative illuminated t h i s emotion. After each delivery I thought I'm just l i k e every other woman at t h i s moment...and I s t i l l am as far as the kids are concerned. Conclusion. Attitudes about stomas and childbearing influenced the women's perceptions about t h e i r childbearing experiences. The analysis of the case studies suggested that the stoma made some women f e e l unique whereas childbearing provided an opportunity to f e e l l i k e others. Summary of Cross-Case Report. The findings from the six in d i v i d u a l case studies were expanded and then grouped according to Snyder•s (1979) childbearing framework into the ph y s i o l o g i c a l , the s e l f , the family, the s o c i a l , and the c u l t u r a l systems and a comparison made across cases. Although I l l each system was addressed separately i t was considered i n l i g h t of how i t interacted with the others. The most serious complications noted i n the study included three cases of bowel obstruction and two cases of stomal prolapse. Altered stomal shapes, peristomal skin i r r i t a t i o n , increased t h i r s t , and complicated d e l i v e r i e s were also noted. Concerns were expressed about whether a flare-up of Crohn's disease would occur during pregnancy or whether the stoma would i n t e r f e r e with pregnancy or the health of the fetus. Four women required h o s p i t a l i z a t i o n during pregnancy which placed an added s t r a i n on both the women and t h e i r partners. Both sought support from each other and from physicians, nurses, and support groups. The knowledge, s k i l l s , and attitudes of these groups i n turn affected the childbearing experience. Summary of Findings This study was undertaken to explore how a stoma a f f e c t s the experience of childbearing. To answer t h i s research question six case studies were reviewed, t h e i r findings analyzed according to the major concepts of Snyder's (1979) childbearing framework, and presented i n s i x i n d i v i d u a l case reports. F i n a l l y , the findings 112 were expanded and compared across cases and presented i n a cross-case report. 113 CHAPTER FIVE Discussion, Conclusions, Implications, and Summary Introduction This chapter w i l l begin with a discussion of the findings i n r e l a t i o n to the l i t e r a t u r e . Conclusions about how a stoma affects the experience of childbearing w i l l then be drawn and implications for nursing practice, education, and research i d e n t i f i e d . F i n a l l y , a summary of the study w i l l be presented. Discussion Five of the six women i n the study had ileostomies as a r e s u l t of Crohn's disease and one as a r e s u l t of ul c e r a t i v e c o l i t i s . This i s consistent with the l i t e r a t u r e which reports that Crohn's disease i s currently the most common indication for ileostomy (McGarity, 1992) and that Crohn's disease has a peak prevalence p r i o r to age 35 (Mendeloff, 1985). Crohn's disease was also the indication for ileostomy i n the most recently published study about stomas and pregnancy by N i c h o l l , Thompson, and Cocks (1993). Physiological System Complications of pregnancy, altered stomal sizes and peristomal skin, diet, and modes of delivery w i l l 114 be addressed i n r e l a t i o n to the l i t e r a t u r e . Complications of pregnancy. The most serious complications noted i n the study included three cases of bowel obstruction and two cases of stomal prolapse. These findings are consistent with medical studies reviewed on stomas and pregnancy i n which the most frequent and serious complication reported was bowel obstruction, (Gopal et a l . , 1985; Hudson, 1972; N i c h o l l et a l . , 1993; P r i e s t et a l . , 1959; Scudamore et a l . , 1957) and the second, stomal prolapse (Gopal et al.,1985; Hudson, 1972; N i c h o l l et a l . , 1993; Scudamore et a l . , 1957). Similar to reports i n the medical l i t e r a t u r e , the symptoms of bowel obstruction subsided with conservative management (Nicholl et a l . , 1993; P r i e s t et a l . , 1959) and were d i f f i c u l t to d i f f e r e n t i a t e from symptoms of pregnancy (Hudson, 1972; N i c h o l l et a l . , 1993). In two cases of bowel obstruction women were admitted to h o s p i t a l with suspected o b s t e t r i c a l complications. With regard to stomal prolapse, both cases were revised s u r g i c a l l y during pregnancy which i s consistent with the treatment described i n the l i t e r a t u r e (Gopal et a l . , 1985; N i c h o l l et a l . , 1993; Scudamore et a l . , 1957). 115 However, the medical studies reviewed do not address other concerns related to either of these complications, such as the women's concerns about the health of the fetus, the partners' concerns, and alt e r e d l i f e - s t y l e s . Altered stomal sizes and peristomal skin. The study's findings revealed four cases of enlarged stomas during pregnancy, one case of stomal r e t r a c t i o n postpartum, and one case of peristomal skin i r r i t a t i o n as a consequence of a reaction to adhesive tape. However, a l l of these alt e r a t i o n s can occur regardless of pregnancy. One study i n the research-based l i t e r a t u r e revealed the occurrence of stomal enlargement during pregnancy (Hudson, 1972) but stomal r e t r a c t i o n or peristomal skin i r r i t a t i o n were not mentioned. Three women i n the six anecdotal reports reviewed, however, referred to alter a t i o n s i n stomal s i z e during pregnancy. A l l of the above changes required modifications to pouching systems. Aside from a pouching modification for stomal prolapse described by N i c h o l l et al.(1993), the research-based l i t e r a t u r e concerning pregnancy and stomas does not address technical d i f f i c u l t i e s . 116 However, the l i t e r a t u r e pertaining to coping with a stoma i n general does suggest that individuals with stomas have ongoing technical problems including the continuous need to obtain, apply, and monitor stoma appliances to deal with stomal and peristomal changes ( F o l l i c k et a l . , 1984; Kelly, 1991). Diet. The study's findings revealed that two women needed to increase t h e i r f l u i d intake as a consequence of increased t h i r s t . After an incident of food blockage, one decided to further increase her f l u i d s and eat smaller more frequent meals to prevent further problems. Increased t h i r s t during pregnancy i s addressed i n o b s t e t r i c a l l i t e r a t u r e , but not s p e c i f i c a l l y addressed i n the research-based l i t e r a t u r e pertaining to stomas and pregnancy. Ke l l y (1991), however, asserted that individuals with stomas need to give constant attention to die t to prevent s u r g i c a l and medical complications, such as food blockages. Mode of delivery. In contrast to the the medical l i t e r a t u r e , which revealed the majority of women with stomas experienced uncomplicated pregnancies with vaginal d e l i v e r i e s 117 (Barwin et a l , 1974; Gopal et a l . , 1985; Hudson, 1972; P r i e s t et a l . , 1959; Scudamore et a l . , 1957), the findings suggest that women with stomas may experience complicated d e l i v e r i e s . In three cases, Caesarean sections were performed and i n one, a vaginal d e l i v e r y was assisted with forceps. This contrast to the l i t e r a t u r e can perhaps be explained by t h i s study's small sample s i z e . A review of anecdotal reports also revealed a majority of uneventful vaginal d e l i v e r i e s , with the exception of one 7 week premature delivery. I t i s possible, however, that only women with uncomplicated d e l i v e r i e s selected to publish t h e i r accounts. The study's findings also d i f f e r from findings by Shaul et a l . (1987) who imply that the experiences of disabled women with labour and delivery were s i m i l a r to those of non-disabled women. Women with stomas, however, were not included i n t h e i r sample. The se l e c t i o n of the most appropriate mode of deli v e r y was the chief concern expressed by the physicians i n the study. Factors such as perineal scarring r e s u l t i n g from proctocolectomy, stomal prolapses, a rectovaginal f i s t u l a , and adhesions from 118 previous bowel surgery influenced t h e i r decisions, and consequently the mode of delivery selected. The r a r i t y of the s i t u a t i o n and the sc a r c i t y of l i t e r a t u r e about the subject seemed to compound the decision process. In summary, although the research-based l i t e r a t u r e adequately describes the physiological factors associated with complications of pregnancy and modes of delivery, i t f a i l s to address the psychosocial and c u l t u r a l issues these may create for both the women and her family. I t also f a i l s to address the issue of pregnant women acquiring altered stomal sizes, possible peristomal skin i r r i t a t i o n , or increased t h i r s t . However, the l i t e r a t u r e does suggest that non-pregnant in d i v i d u a l s with stomas may have ongoing technical d i f f i c u l t i e s with stomal management and a need to constantly monitor t h e i r d i e t . I t appears that these tasks and t h e i r accompanying frustrations and inconveniences apply to pregnancy as well. Self System The findings revealed that three women mentioned being g r a t e f u l for bowel surgery with ileostomy for improving t h e i r quality of l i f e and providing them with an opportunity to either have or care for children. 119 The notion that pregnancy was perceived as an opportunity for individuals with stomas to lead ordinary l i v e s was also expressed by N i c h o l l et a l . (1993) . The findings from the study also disclosed that women had concerns regarding whether t h e i r stoma would i n t e r f e r e with pregnancy; whether adequate assistance would be provided during h o s p i t a l i z a t i o n ; whether a flare-up of Crohn's disease would occur; and whether surgery or the absence of colon would e f f e c t the fetus. In addition, they worried that t h e i r children may develop Crohn's disease. The underlying theme for a l l these concerns was lack of knowledge and fear of the unknown. Aside from b r i e f suggestions that women with stomas may need psychological support during pregnancy (Barwin et a l . , 1974; Nic h o l l et a l . , 1993) the research-based l i t e r a t u r e on stomas and pregnancy f a i l s to address the emotional issues experienced by t h i s group of women during pregnancy. However, l i t e r a t u r e r e l a t e d to chronic i l l n e s s and pregnancy does address the issue that women with chronic i l l n e s s e s , i n general, have special concerns which can be reduced by the provision of information (Carty, (in press); 120 Corbin, 1987; Shaul et a l . , 1987). However, a review of published anecdotal accounts on stomas and pregnancy also revealed that several women worried that the stoma may i n t e r f e r e with pregnancy and one worried that her children may develop Crohn's disease. Family System The main concerns expressed by the partners were the health of t h e i r wife and that of the fetus. H o s p i t a l i z a t i o n along with a lack of information i n t e n s i f i e d these concerns. F i n a l l y , the findings disclosed that a l l the women considered t h e i r partners to be important sources of emotional support. These findings have not been addressed i n the research-based l i t e r a t u r e pertaining to stomas and pregnancy. However, the l i t e r a t u r e does acknowledge that emotional support from a partner f a c i l i t a t e s an ind i v i d u a l ' s adaptation to a stoma (Dyk & Sutherland, 1956; Kobza, 1983) and that a partner's concerns can often be rel i e v e d by the provision of information (Kobza (1983) . Family support i s also a key issue i n the childbearing l i t e r a t u r e . A review of the anecdotal accounts published on 121 stomas and pregnancy also recognized the s i g n i f i c a n t r o l e that a partner can play i n providing emotional support during pregnancy. So c i a l System Three notable findings worthy of discussion are the f a c t that a l l the women wanted information about t h e i r pregnancies, a l l found they had to take some i n i t i a t i v e i n finding the information, and a l l wanted to t a l k about t h e i r experiences of pregnancy and about coping with a stoma i n general. Information about pregnancy and the e f f e c t of the stoma on pregnancy was sought from resources persons, such as physicians, ET nurses, and a d i e t i c i a n , and from support groups such as pre-natal classes and the UOA. In e f f e c t most women were t r y i n g to learn more about the experience of childbearing to reduce t h e i r fears and i n some cases to empower themselves to make the r i g h t choices. The desire for pregnant women with stomas or other chronic conditions to learn about t h e i r s i t u a t i o n i s also documented i n the l i t e r a t u r e (Nicholl et a l , 1993; Corbin, 1987). A l l the physicians were considered knowledgeable with respect to o b s t e t r i c a l issues and most were considered helpful with respect to 122 stomal issues. Some physicians recognized the importance of providing information and including the women and t h e i r partners i n decision-making. These strategies proved very e f f e c t i v e i n reducing fears and fos t e r i n g a po s i t i v e perspective of pregnancy. This f i n d i n g supports Corbin's (1987) claim that women with chronic i l l n e s s e s should be provided with ample information so that they can make the r i g h t decisions and learn to manage r i s k factors of pregnancy. Ob s t e t r i c a l nurses, although perceived as competent care givers with respect to o b s t e t r i c a l issues, lacked the cognitive, psychomotor, and a f f e c t i v e s k i l l s necessary to provide e f f e c t i v e care for i n d i v i d u a l s with stomas. This observation was also noted i n the nursing l i t e r a t u r e (Joachim, 1990; Keirstead, 1989) and Joachim (1990) further suggests that nurses would benefit from stomal i n s t r u c t i o n i n the cognitive, psychomotor, and a f f e c t i v e domains. ET nurses, on the other hand, were perceived by several of the women to be valuable sources of knowledge and support with regard to stomal care. Keirstead (1989) also compared the s k i l l s of these two professional nurses and, i n her thesis to determine the learning 123 needs of individuals with newly created colostomies, reported that hospital nurses were perceived as having l i m i t e d knowledge about stomal care and ET nurses as having expert knowledge. However, the very f a c t that ET nurses are considered to be the experts might be the reason why general duty nurses lack adequate s k i l l s . Rather than acting as resource persons for other nurses, ET nurses usually take on the sole r e s p o n s i b i l i t y of providing stomal care and ac t u a l l y spend l i t t l e time advancing these s k i l l s i n other nurses. Pre-natal classes, while considered by some to be useful with respect to o b s t e t r i c a l issues, were not perceived by any of the woman as a support service regarding t h e i r concerns about the e f f e c t of the stoma on pregnancy, delivery, or h o s p i t a l i z a t i o n . Although the l i t e r a t u r e does not s p e c i f i c a l l y address the need for women with stomas to have access to pre-natal counselling, Carty (in press) recommends that a l l women with d i s a b i l i t i e s , regardless of the nature of the d i s a b i l i t y , review t h e i r special needs for labour and b i r t h with hospital s t a f f p r i o r to h o s p i t a l i z a t i o n . Perhaps pre-natal classes would have been perceived by 124 the women i n the study as more helpful i f the inst r u c t o r s had provided an opportunity for women to express t h e i r concerns and had helped to formulate plans of care to address theses concerns during h o s p i t a l i z a t i o n . However, individuals with stomas must also be prepared to take the i n i t i a t i v e of informing care givers of t h e i r special needs. The UOA, although recognized as a source of support for many individuals with stomas, had l i t t l e l i t e r a t u r e about stomas and pregnancy and a li m i t e d number of volunteer v i s i t o r s . Both these factors were unavoidable as l i t t l e knowledge exists about stomas and pregnancy aside from a few medical studies and anecdotal accounts, and few women who have stomas are avai l a b l e to discuss c h i l d b i r t h , as few have experienced i t . Due to a paucity of l i t e r a t u r e and resource persons, the women often had to use t h e i r own i n i t i a t i v e i n acquiring information and appropriate assistance. As Corbin (1987) noted, women with chronic i l l n e s s e s often play a s i g n i f i c a n t part i n the management of t h e i r pregnancies. The findings from t h i s study suggest that the women themselves became the 125 experts at recognizing t h e i r needs and at finding appropriate assistance. Similar to findings by Shaul et a l . (1987) and by several anecdotal reports reviewed, a l l the women reported that, during pregnancy, they would have l i k e d to have talked to another woman with a stoma who had experienced pregnancy. As Shaul et a l . (1987) observed, most women with d i s a b i l i t i e s want to speak with a woman with a similar d i s a b i l i t y who has gone through pregnancy to gain insight into what to anticipate during pregnancy and postpartum. Also, s i m i l a r to findings by Nic h o l l et a l . (1993), a l l seemed keen to share t h e i r experiences of childbearing with the researcher and recounting the events of the pregnancy possibly helped them come to terms with i t . Further, most women were interested i n discussing with the researcher t h e i r surgery with ileostomy and, or, t h e i r d a i l y implications of l i v i n g with a stoma. These observations also correspond to findings by Ke l l y (1991), who suggests that individuals' explanations of how they cope with t h e i r ileostomies are a coping method i n t h e i r own rig h t as they provide them with an opportunity to interpret t h e i r situations. 126 In summary, the findings from the study suggest that health care professionals and support groups can be instrumental i n reducing fears and f a c i l i t a t i n g p o s i t i v e perceptions of childbearing. C u l t u r a l System The findings suggest that the stoma made most women f e e l unique and sometimes even shameful or embarrassed. These findings were also noted i n the l i t e r a t u r e (Dlin, 1978; Kelly,1991). Also, s i m i l a r to findings i n the l i t e r a t u r e , the study suggests that i n d i v i d u a l s with stomas s t r i v e to construct a normal i d e n t i t y and that pregnancy may help to achieve t h i s (Kelly, 1991; Ni c h o l l et a l . , 1993). The success at being able to give b i r t h to healthy newborns perhaps contributed to the perceptions by a l l the women i n the study that t h e i r childbearing experiences had o v e r a l l been p o s i t i v e experiences. Despite the fact that women with stomas have experienced c h i l d b i r t h since the mid-1900's, l i t t l e has been published i n scholarly health care l i t e r a t u r e about t h e i r psychosocial needs. Shaul et al.(1987) have suggested that a c u l t u r a l bias has existed that women with d i s a b i l i t i e s should not bear or r a i s e 127 c h i l d r e n and that consequently the needs of these women have been neglected. Perhaps t h i s bias has extended to women with stomas as well. Summary of Discussion The research findings have been discussed i n r e l a t i o n to the l i t e r a t u r e . The two most serious complications noted i n the study were bowel obstruction and stomal prolapse and these and t h e i r respective methods of treatment have been previously i d e n t i f i e d i n the l i t e r a t u r e . However, the psychosocial issues re l a t e d to these complications have not been addressed i n the health care l i t e r a t u r e . The study's findings with respect to altered stomal sizes, peristomal skin, and f l u i d intake have received only b r i e f mention i n the l i t e r a t u r e related to stomas and pregnancy but the health care l i t e r a t u r e does address the need for in d i v i d u a l s with stomas to continually monitor t h e i r stomas, peristomal skin, and diet. In contrast to the l i t e r a t u r e , four of the six women i n the study required operative d e l i v e r i e s or o b s t e t r i c a l intervention as either a d i r e c t or in d i r e c t consequence of having a stoma. However, sim i l a r to the findings i n the l i t e r a t u r e , they a l l gave b i r t h to healthy babies. 128 The emotional concerns that a woman with a stoma and her partner may have during pregnancy have not been addressed i n the scholarly health care l i t e r a t u r e . However, the significance of the partner's support for ind i v i d u a l s with stomas has been discussed. The study's findings that the women wanted more information about t h e i r pregnancies, that they needed to take some i n i t i a t i v e i n finding the information, and that they wanted to tal k about t h e i r experiences of pregnancy and about coping with a stoma i n general are a l l consistent with the l i t e r a t u r e pertaining to chronic i l l n e s s and pregnancy. Also perceptions about the ET nurses 1 expertise and the general nurses• lack of expertise with respect to stomal care are congruent with findings i n the l i t e r a t u r e related to the non-pregnant i n d i v i d u a l with a stoma. F i n a l l y , the embarrassment associated with having a stoma has been documented i n the l i t e r a t u r e as has a b r i e f suggestion that pregnancy perhaps provides an opportunity for individuals with stomas to construct a normal i d e n t i t y . In summary, the study's findings s u b s t a n t i a l l y add to the body of knowledge pertaining to the childbearing 129 experience for a woman with a stoma and they also provide further insight into the ongoing challenges faced by individuals with stomas. Conclusions Although each case study presented with d i f f e r e n t findings, i n each case the stoma affected the woman's phys i o l o g i c a l , s e l f , family, s o c i a l , and c u l t u r a l systems and these interacted to create s i x unique childbearing experiences. These findings suggest that Snyder's (1979) childbearing framework i s applicable to t h i s population and possibly to others. The following conclusions are drawn. 1. Physiological implications of having a stoma during pregnancy include: bowel obstruction, stomal prolapses, altered stomal sizes and shapes, peristomal skin i r r i t a t i o n , increased t h i r s t , and operative d e l i v e r i e s . 2. Complications of pregnancy cause fear and inconvenience for both the woman and her family. 3. Women with stomas need pre-natal counselling to learn what they can anticipate with pregnancy, labour delivery, and postpartum; to share t h e i r concerns and t h e i r knowledge; and to partic i p a t e i n formulating a 1 3 0 management plan for t h e i r pregnancy and ho s p i t a l i z a t i o n . 4. Basic and and continuing nursing education programs need to address the af f e c t i v e , cognitive, and psychomotor s k i l l s necessary to care for ind i v i d u a l s with stomas. 6 . Factors that contribute to a po s i t i v e childbearing experience include: a healthy pregnancy and postpartum; a supportive partner; knowledgeable and caring physicians and nurses; available research-based l i t e r a t u r e regarding the ef f e c t of stomas on pregnancy; and someone to tal k to with similar needs. 7. The technical, psychosocial, and c u l t u r a l challenges faced by women with stomas during pregnancy are not unlike those experienced on a d a i l y basis by any i n d i v i d u a l with stoma. 8. Bowel surgery with ileostomy may provide an opportunity for women who are i l l with inflammatory bowel disease to have children. Implications Implications for Nursing Practice The findings suggest a number of implications for nursing practice. 1 . nurses involved i n pre-natal classes need to be sen s i t i v e to the special needs of women with stomas and provide them with an opportunity to express t h e i r concerns. In addition the following interventions should be implemented: women with stomas should be referred when possible to an ET nurse for continued support; the women should be informed about possible p h y s i o l o g i c a l implications of having a stoma during pregnancy; and the women's special needs during labour, delivery, and postpartum should be reviewed with h o s p i t a l s t a f f p r i o r to ho s p i t a l i z a t i o n . 2. partners should be included i n pre-natal counselling and the c h i l d b i r t h experience as they are considered important sources of support. 3. nurses must support the woman's e f f o r t s to pra c t i c e independent stoma management and decision-making. 4. ET nurses need to work cl o s e l y with the UOA to a s s i s t with t r a i n i n g women with stomas who have experienced c h i l d b i r t h to become v i s i t o r s for other women contemplating or experiencing pregnancy. Implications for Nursing Education The findings suggest the following implications 132 for nursing eduction. 1. a l l nurses need basic and continuing education with regard to the a f f e c t i v e , psychomotor, and cognitive domains of stomal care. 2. ET nurses should be a c t i v e l y involved i n basic and continuing nursing education programs regarding the a f f e c t i v e , psychomotor, and cognitive aspects of stomal care. Implications for Nursing Research The study's findings suggest the following areas of research would enhance understanding of the childbearing experience for women with stomas. 1. nurses' attitudes towards caring for patients with stomas. 2. how ET nurses can be more e f f e c t i v e i n r a i s i n g the public's and health care professionals' awareness about the needs of individuals with stomas. 3. the impact of Crohn's disease on pregnancy p r i o r to, or following bowel surgery with ileostomy. Summary Individuals with stomas face ongoing challenges that can be physiological, psychosocial, and c u l t u r a l i n nature. Although research exists that describes how 133 a stoma a f f e c t s the d a i l y l i v e s of individuals, only a few medical studies have been done to determine how a stoma a f f e c t s childbearing. The findings from these studies, while replete with physiological considerations, do not address psychosocial or c u l t u r a l implications. The research question put forth therefore was: how does a stoma a f f e c t the childbearing experience? Case study methodology was the research design selected to explore t h i s question. This was an appropriate design for i t allowed the researcher to use a va r i e t y of evidence to explore i n depth a subject about which l i t t l e i s known. Only eight women with stomas l i v i n g i n the Lower Mainland, Sunshine Peninsula, and Fraser Valley of B r i t i s h Columbia were noted to have experienced c h i l d b i r t h i n the past 18 months and s i x participated i n the study. To strengthen the conclusions of the study, data were c o l l e c t e d from each woman, her partner, i n a l l but one case, and her physician. An informal interview guide consisting of open and closed-ended questions was used to s o l i c i t t h e i r impressions of how the stoma affected the childbearing experience. The interviews 134 with the women and t h e i r partners took place i n t h e i r homes and were audio-taped and transcribed. Partners who could not be present for the interview were interviewed on the telephone. A l l the physicians were also interviewed on the telephone and the researcher made notes during the telephone interviews. In each case study the data obtained from the interviews with the partners and the physicians supported the women's own s t o r i e s . Snyder's (1979) h o l i s t i c model of the childbearing experience was used to guide the observations and the analysis for the study. Data were c o l l e c t e d and analyzed according to the major concepts of the model: the ph y s i o l o g i c a l system, the s e l f system, the family system, the s o c i a l system, and the c u l t u r a l system and conclusions drawn about how the stoma a f f e c t s each system and how the systems interacted to create unique childbearing experiences for each in d i v i d u a l woman. The findings were presented i n six i n d i v i d u a l case reports and common issues were then i d e n t i f i e d , expanded, and compared i n a cross-case report. 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Bryant (Eds.). Ostomies and continent diversions: Nursing management (pp. 349-369). St. Louis: Mosby Year Book. Mendeloff, A.I. (1985). Epidemiologic aspects of inflammatory bowel disease. In J.E. Berk (Ed.), Bockus gastroenterology (4th ed., Vol. 4, pp. 2127-213 6). Philadelphia: W.B. Saunders. N i c h o l l , M.C., Thompson, J.M., & Cocks, P.S. (1993). Stomas and pregnancy. Aus t r a l i a New Zealand Journal of Obstetrics and Gynaecology. 33 (3), 322-324. Nordgren, B. (1993). Boy oh boy! Ostomy Quarterly. 30 (2), 16-17. P r i e s t , F.O., & G i l c h r i s t , R.K. (1959). Pregnancy i n the patient with ileostomy and colectomy. Journal of American Medical Association. 169 (3), 213-215. Rubin, R. (1976). Forward. In A.L. Clark & D.D. Affonso (Eds.), Childbearing: A nursing perspective (p. v i i ) . Philadelphia: F.A. Davis. Scudmore, H.H., Rogers, A.G., Bargen, J.A., & Banner, E.A. (1957). Pregnancy after ileostomy for chronic u l c e r a t i v e c o l i t i s . Gastroenterology. 32 (2), 295-303. Shaul, S., Dowling, P, & Daden, B.F. (1987). Like other women: Perspectives of mothers with physical d i s a b i l i t i e s . Journal of Sociology and S o c i a l Welfare. 8 (2), 364-375. Snyder, D.J. (1979). The high r i s k mother viewed i n r e l a t i o n to a h o l i s t i c model of the childbearing 139 experience. Journal of Obstetrical. Gynecological, Neonatal Nursing, 8 (3), 164-170. Van Buskirk, T. (1985). Ch i l d b i r t h a f t e r an ostomy. Ostomy Quarterly, 26 (2), 20-23. Yin, R.K. (1994). Case study research: Design and methods (2nd ed.). Thousand Oaks, CA: Sage Publications. 140 APPENDICES Appendix A School of Nursing The University of B r i t i s h Columbia Vancouver, B.C. Introductory Letter to Individuals Recruiting Participants Dear : My name i s Margery Hawkins. I am an Enterostomal Therapy Nurse and currently a student i n the Master of Science i n Nursing program at the University of B r i t i s h Columbia. I am doing a research study to explore the childbearing experience for women with stomas. Very l i t t l e i s known about t h i s experience and consequently a lack of theory exists on which to base e f f e c t i v e care planning. The findings of the study w i l l a s s i s t health care professionals to plan e f f e c t i v e strategies to care for pregnant women with stomas and w i l l provide women with stomas, contemplating or experiencing pregnancy, with in s i g h t into t h e i r condition. If you know of any women with stomas who have experienced pregnancy i n the past 18 months, would you please send them t h i s l e t t e r along with the "Letter of Information" i n the stamped envelope provided. Thank you for your assistance. Yours t r u l y , Margery Hawkins, R.N. MSN Student, UBC School of Nursing 141 Appendix B School of Nursing The University of B r i t i s h Columbia Vancouver, B.C. Information Letter to Prospective Participants My name i s Margery Hawkins. I am an Enterostomal Therapy Nurse and currently a student i n the Master of Science i n Nursing program at the University of B r i t i s h Columbia. I am doing a research study to explore the childbearing experience for women with stomas. Very l i t t l e i s known about t h i s experience and hopefully the findings of the study w i l l a s s i s t health care professionals to plan e f f e c t i v e strategies to care for pregnant women with stomas and w i l l provide women with stomas, contemplating or experiencing pregnancy, with insight into t h e i r condition. If you agree to partic i p a t e i n the study I would l i k e to: interview you; interview your partner, i f you both agree; review your hospital health records to obtain background information about the b i r t h of your c h i l d ; and interview your physician involved with your o b s t e t r i c a l care. A summary of the findings of the study w i l l be made available for you on completion of the study. The interview with you w i l l l a s t approximately one hour and w i l l be conducted at a time that i s mutually convenient and i n a setting of your choice. The interview w i l l be audio-taped and transcribed and the tapes and transcriptions destroyed following completion of the study. Your privacy w i l l be protected at a l l times. Any information that you share w i l l be held i n the s t r i c t e s t confidence and you w i l l never be i d e n t i f i e d i n any published or unpublished materials. You may refuse to comment or you may withdraw from the study at any time without jeopardy or prejudice to your health care. If you have any questions regarding t h i s study or i f you are interested i n p a r t i c i p a t i n g i n the study you may telephone me at 224-4121, or my thesis supervisor, Professor Elaine Carty at 822-7444. Yours t r u l y , Margery Hawkins, R.N. MSN Student, UBC School of Nursing 142 Appendix C School of Nursing The University of B r i t i s h Columbia Vancouver, B.C. Information Letter to Pa r t i c i p a t i n g Physicians Dear: RE: I am an Enterostomal Therapy Nurse and currently a student i n the Master of Science i n Nursing program at the University of B r i t i s h Columbia. I am doing a research study to explore the childbearing experience for women with stomas. The t i t l e of my study i s "The Childbearing Experience for Women with Stomas: A Multiple Case Study". The findings of the study w i l l a s s i s t nurses to plan e f f e c t i v e strategies to care for pregnant women with stomas and w i l l provide women with stomas, contemplating or experiencing pregnancy, with i n s i g h t into t h e i r condition. Women with stomas who have experienced c h i l d b i r t h i n the past 18 months are being asked to p a r t i c i p a t e i n the study. The above patient has consented to be a par t i c i p a n t and has agreed that I may contact you to discuss the following issues: 1. Concerns you may have had about the e f f e c t of the stoma on her pregnancy/delivery. 2. Any precautions taken regarding the above concerns. 3. Any complications that occurred that were re l a t e d to the stoma during pregnancy/delivery/postpartum and the management of these complications. 4. The involvement of other physicians i n the 143 patient's care during the pregnancy/delivery. A "Release of Information Form" i s enclosed. I w i l l soon be contacting you by telephone to determine i f you agree to pa r t i c i p a t e i n the study and i f so, to arrange for a convenient time to b r i e f l y discuss these issues with you. The findings of the study w i l l be made availa b l e for you. If you have any questions about the study you may telephone me at 224-4121, or my thesis supervisor, Professor Elaine Carty at 822-7444. Yours t r u l y , Margery Hawkins, R.N. MSN Student, UBC School of Nursing 144 Appendix D School of Nursing The University of B r i t i s h Columbia Vancouver, B.C. Page 1 of 2 Woman's Consent Form I agree to p a r t i c i p a t e i n the nursing research study, "The Childbearing Experience for Women with Stomas: A Multiple Case Study" to be conducted by Margery Hawkins, a graduate student i n the Master's of Science i n Nursing program at the University of B r i t i s h Columbia. The purpose, the demands, and the benefits of the study have been explained to me. I understand that my p a r t i c i p a t i o n includes a one hour interview with Margery Hawkins at a location of my choice. I understand that t h i s interview w i l l be audio-taped and transcribed and the tapes and transcriptions destroyed following completion of the study. I understand that my privacy w i l l be protected at a l l times, that any information I share with you w i l l be held i n the s t r i c t e s t confidence, and that I w i l l never be i d e n t i f i e d i n any published or unpublished materials. I have read the l e t t e r that Margery Hawkins w i l l send to the physicians involved with my pre-natal and o b s t e t r i c a l care and agree that she may send i t . I also give permission to Margery Hawkins to read the h o s p i t a l records pertaining to my childbearing experience. I understand that my p a r t i c i p a t i o n i s voluntary and that I may withdraw from the study at any time without jeopardizing my health care. I understand that I may c l a r i f y any further questions by contacting Margery Hawkins at 2 2 4-4121 or 145 Page 2 of 2 Professor Elaine Carty at 822-7444. My signature on t h i s form v e r i f i e s my intention to p a r t i c i p a t e i n t h i s study. I have retained a copy of t h i s consent form for my records. Woman's Signature Date Investigator•s Signature Date 146 Appendix E School of Nursing The University of B r i t i s h Columbia Vancouver, B.C. Partner 1s Consent Form I agree to p a r t i c i p a t e i n the nursing research study, "The Childbearing Experience for Women with Stomas: A Multiple Case Study" to be conducted by Margery Hawkins, a graduate student i n the Master's of Science i n Nursing program at the University of B r i t i s h Columbia. The purpose, the demands, and the benefits of the study have been explained to me. I understand that my p a r t i c i p a t i o n includes a one hour interview with Margery Hawkins at a location of my choice. I understand that t h i s interview w i l l be audio-taped and transcribed and the tapes and t r a n s c r i p t i o n s destroyed following completion of the study. I understand that my privacy w i l l be protected at a l l times, that any information I share with you w i l l be held i n the s t r i c t e s t confidence, and that I w i l l never be i d e n t i f i e d i n any published or unpublished materials. I understand that my p a r t i c i p a t i o n i s voluntary and that I may withdraw from the study at any time without jeopardizing my health care or that of my partner. I understand that I may c l a r i f y any further questions by contacting Margery Hawkins at 224-4121 or Professor Elaine Carty at 822-7444. My signature on t h i s form v e r i f i e s my intention to p a r t i c i p a t e i n t h i s study. I have retained a copy of t h i s consent form for my records. Partner's Signature Date Investigator's Signature Date 147 Appendix F School of Nursing The University of B r i t i s h Columbia Vancouver, B.C. Release of Information Form Re: I understand that Margery Hawkins, a graduate student i n the Master 1s of Science of Nursing Program at the University of B r i t i s h Columbia w i l l be asking you for information about the following issues: 1. concerns you may have had about the e f f e c t of the stoma on the pregnancy/delivery. 2. any precautions taken regarding the above concerns. 3. any complications that occurred that were re l a t e d to the stoma during pregnancy/delivery/postpartum and the management of these complications. 4. the involvement of other physicians i n the patient's care during the pregnancy/delivery. I give you permission to discuss the above issues with Margery Hawkins. Signed: Witness: Date: 148 V) 0> 3 o u 0 0 O tt & L_ 3 C 01 O CO . c >~ . c +J c +J 01 o c (A L. o C^' c OJ >— "a z > C-CD (_ CD c CD O 4-> 4-» - C 01 c n C (D (S C 4-> 01 ID O J C L. «-\ >. O) 4 ^ C_ C 3 *> g CD u C CD at —• j= 3 c •M a> a fc: OJ CD 1_ 0) CD t- g e > c «+- c 3 -C Q . S o> 3 *-> o O) T J § 2 o C -w C l - 01 — u i * -£= t_ c C c > - C- CD 4 ^ a o 01 — c 3 a O) t_ o>>*- c t_ tn l - o 3 u 3 T 3 0) a 9 CO O c cr o O i S-—• O) >. 3 5 c - > C o c c >. (_ CD OJ 01 v >. CU — [_ T J C 0) — U) t . D) s- (_ <v CD CD > 45 CO c*. 01 3! I— > E 01 CU o >. o c_ 3 S. 3 O - C +J t_ Q . O X O —> CU u * J UI 0) cfl > . 41 > . 01 at > T> 01 > OJ " O c H - > (_ L- C •D 3 O \ » o H— »4- 3 3 — o * J >- QJ o 01 O 01 o 1-•a >- O ey) +-» O > - T 3 > • 3 "9 c a o 4! * J CD \ • a 3 -o CU CD CD 3 9- CD T 3 " O o • - +J c - J L. 5s JC >» 3 z a i i CD OJ —> CP OJ c O * J »— i 3 CD a CD a CD 3 Ut 3 3 L. Q. w O 3 3 "D 3 — ' 3 3 CD O a, <2 | !H o -X5; -•H u « 2 « ci <D > CU o 0) o c 0) C_ 8. "8 CA « 01 t_ < c ai 01 >- at o o c CD o C D> a 01 [_ Q . •s. D) 4) C JI L_ 3 C T 3 o m +J CO OJ V) -C o o •M U S> CJ > H -0) »+-—' (1> 0) "8 a> c c/> c CU QJ 3 O a o> o c o t_> 1 4 9 parti our bour/ i- p- >- ra 3 I o o > >- z 5 2 4-* <0 (0 c 2 5 OJ o> > OJ Q- (A ra t-\ £ Q -JZ >• (/) U 3 QJ c c O -C O (0 >- w — c T J O) C*-ro OJ ' - c | —. t_ T J — OJ Q. u *-» 1. W 3 1_ OJ C T J 2 L. JZ C- a 3 * J 01 - C O (J V (A >• >- c - > Q - Q o ra a . ID U OJ \ ra T J >-3 £ t_ 1 +J <o m <u u J C - > O . V 3 OJ •»— «4- 1 H -* S - OJ 3 ro Q . 2 T J 3 O >-in in 3 XI ra 3 O >-3 OJ <-O) ID — Q. 13 in c o > • u c —" m I 8. c ^ OJ OJ > T J OJ \ —• > • u V) c - ra i— c OJ o ) c OJ •M i-i - a in 1 5 0 L p D. S CO 6 CO U> o o o ra c -c c c o> ved i durin you nt of tomy any CJ CO o *J i_ o .c nv c 8. D> 3 TJ * J ra •— cu CD O CO* 3 CN- _ C 3 : cu O ) c CL CO O 3 i_ CU ra o CO .c o OJ u c CO c ra 3 >-3 ra CO c cu o u £ CO O <N. o CO OJ CO — 3 ro TJ u 1 •M O CD cu 3 CO 3C . C N CO 5 > TJ ra N *J ••- «J o L. +J p- CO CO t-> 2 CO o —> C 3 CO c a o Q . 4 J ra o CJ SZ c_ * J IS ' B . C_ CL CO o t_ • • - * J CL • • - 4-» CU 8. H-o a. ra > CO 3 c CO N —• o "E c- CU c- o — o -C c !5 CO •g u. a si —> > cu 3 TJ u 2 CD C D) 4-» CO d. c CO -M — C 4-> r» J = OJ o 3 • - CO CO 3 - C •u £_ o a 3 c a u ra CL *J — CO O 3 3 3 L, CD i-> ra > o >-TJ O O OJ TJ P» CU ra 3 N CU Sl >> c_ J : 4J CJ c P L. cu ra Dl •w o u cu >~ —> a. C— c- E TJ o c c ra 3 <u o CJ ra ra CL TJ TJ O 3 4-> a C TJ — 4 J JC a — >• I CO • • .- c_ CO 3 L . O a Q OJ i 3 i CO 1 L. a. cu a. i a. CO o o o 3 X CO 3 >~ 3 x: 3 M- 3 « 3* CO 3 OJ ra cu TJ 151 Appendix H Questionnaire for Physician Sample Questions 1. Can you t e l l me what concerns you had about the e f f e c t the stoma might have on the pregnancy/delivery? 2. Were any precautions taken regarding the above concerns? 3. Did the patient experience any complications r e l a t e d to the stoma during pregnancy/delivery/postpartum? I f so, how were they managed? 4. Were other physicians involved with the patient's care during the pregnancy/delivery that you are aware of? I f so, what were t h e i r roles? 152 CD X •H 1^ -P (0 H 2 tn •H •H •d (A c >i Q) H (0 c < •P (0 Q •- o D) C O CD o oil ... ai CA L. 

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