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The relationship of perceived maternal conflict to grief intensity in a genetically indicated abortion Mighton, Jane Diane 1990

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The Relationship of Perceived Maternal Conflict to Grief Intensity in a Genetically Indicated Abortion by Jane Diane Mighton B . S . N . , The University of Bri t i sh Columbia, 1986 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 this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August, 1990 ® Jane Diane Mighton, 1990 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 ^~77j*sx~~^>n <? The University of British Columbia Vancouver, Canada DE-6 (2/88) i i Abstract The incidence of congenital anomalies or potent ia l congenital anomalies of fetuses is two to three percent. Most women who have a pos i t ive diagnosis of a congenital anomaly choose to terminate the pregnancy. A review of the l i t e r a t u r e i d e n t i f i e s c o n f l i c t preabortion and g r i e f postabortion as key var iab les for women terminating pregnancies for genetic i n d i c a t i o n s . The purpose of th i s study was to study the degree of c o n f l i c t in the decision-making process preabortion and the i n t e n s i t y of g r i e f s ix weeks postabortion and to determine i f a r e l a t i o n s h i p ex is ts between the c o n f l i c t and g r i e f v a r i a b l e s . This was a d e s c r i p t i v e , c o r r e l a t i o n a l study which used summary s t a t i s t i c s to analyze the data . Women responded to a questionnaire s ix weeks postabortion about c o n f l i c t experienced pretermination and current g r i e f experienced. The sample included nine women who aborted in the second trimester of pregnancy fol lowing e i ther ultrasound, chor ion ic v i l l i sampling, or a lpha- fe toprote in analys i s of the fetus . The f indings indicated that the women experienced c o n f l i c t while deciding whether or not to abort the fetus and that at s ix weeks posttermination the i n t e n s i t y of g r i e f experienced was s t i l l h igh. A scat ter p lo t revealed a c u r v i l i n e a r r e l a t i o n s h i p showing g r i e f plateaulng and then decreasing as the c o n f l i c t scores rose . Recommendations were that object ive counse l l ing in the decision-making period pr ior to the termination be provided, and g r i e f counse l l ing should continue longer than s ix weeks posttermination for those who need counse l l ing . i i i Table of Contents Page Abstract i i Table of Contents i i i L i s t of Figures v Acknowledgements v i CHAPTER ONE Introduction 1 Context of the Problem 1 Significance of the Problem 2 Conceptual Framework 3 Conflict 3 University of Bri t i sh Columbia Model of Nursing 8 Statement of Purpose 13 Research Questions 13 Definition of Terms 13 Assumptions 14 Limitations 14 Organization of the Following Chapters 14 CHAPTER TWO Review of Related Literature 15 Introduction 15 Conflict 15 Grief 18 Summary 21 CHAPTER THREE Methodology 22 Introduction 22 Process of Obtaining Study Participants 22 Instruments 23 iv Data A n a l y s i s 27 E t h i c s and Human R i g h t s 27 Summary 28 CHAPTER FOUR P r e s e n t a t i o n and D i s c u s s i o n of F i n d i n g s .. 29 I n t r o d u c t i o n 29 Study P a r t i c i p a n t s 29 Age, M a r i t a l , and E d u c a t i o n a l S t a t u s 29 P a s t O b s t e t r i c a l H i s t o r y 29 C h a r a c t e r i s t i c s of t h i s Pregnancy 29 Rese a r c h Q u e s t i o n One 30 Rese a r c h Q u e s t i o n Two 32 Rese a r c h Q u e s t i o n Three 35 Summary 37 CHAPTER FIVE Summary, Recommendations f o r N u r s i n g E d u c a t i o n , P r a c t i c e , and Research 38 I n t r o d u c t i o n 38 Summary of the Study 38 Recommendations f o r N u r s i n g E d u c a t i o n and P r a c t i c e 39 Recommendations f o r Res e a r c h 41 Summary 4 4 REFERENCES 45 APPENDICES 50 Appendix A L e t t e r of I n f o r m a t i o n 50 Appendix B Consent t o P a r t i c i p a t e 51 Appendix C Q u e s t i o n n a i r e 52 Appendix D Consent t o be C o n t a c t e d 56 Lis t of Figures Figure I Scatter Plot - Conflict Versus Grief v i Acknowledgements I would l ike to thank my thesis committee members, Alison Rice and Helen E l f e r t , who shared with me their knowledge and expertise of the research topic and the research process. Appreciation is also extended to Dr. Walter Boldt for his wil l ing and expert assistance with the s ta t i s t i ca l analysis of the data. I would also l ike to thank the genetic associates of the Department of Medical Genetics, Shaughnessy Site, University Hospital, for recruiting the women for the study. In particular, Caroline Ganshorn was very helpful with this task. And f ina l ly to my parents and Linda Yearwood-Dance, thank you for your support. 1 CHAPTER ONE Introduction Context of the Problem "The desired and expected outcome of every wanted pregnancy is a normal, functioning infant with a good intel lectual potential" (Jensen & Bobak, 1985). However, not a l l couples f u l f i l l this hope. It is estimated that the background risk for any couple to have a child with major congenital anomalies noted at birth is 2-3% (Gatlin, 1985). Advancements in technology and science allow some major congenital anomalies to be diagnosed prenatally. Chorionic v i l l i sampling, diagnostic ultrasound, and amniocentesis are the major diagnostic techniques used in prenatal diagnosis. Presently, 300 congenital anomalies and genetic diseases can be diagnosed prenatally, and there is speculation that this figure wi l l double in the next decade (Green & Malin, 1988). McKusick (1983) has recorded 3368 genetic disorders to date. This number is increasing as new genetic disorders continue to be recognized. However, not a l l of these conditions cause disease or are l i f e threatening. Holloway and Brock (1988) and Adams, Oakley, & Marks (1982) have predicted that there w i l l be an increased demand for prenatal diagnosis by the year 2000. The increase in demand wi l l be due to the increased number of older women (35-44) among a l l women of reproductive age (15-44) and increased f e r t i l i t y rates for the older group. With a higher incidence of chromosomal abnormalities in fetuses of older women (Selle, 2 Holmes, & ingbar, 1979), there wi l l be an Increased demand for prenatal diagnosis. An outcome of the advances in prenatal diagnosis and the increasing demand for prenatal diagnosis is an increase in the number of selective abortions for those women with a defective or potentially defective fetus. When a genetic abnormality is detected, most women decide to abort the fetus (Finley, Varner, Vinson, & Finley, 1977; Rayburn & LaFerla, 1982). For these women, the decision to abort is not made easily and is an emotional one. The decision may be d i f f i c u l t due to confl ict ing values such as personal values about abortion and disabled persons. As well, the p o l i t i c a l and social controversy that surrounds abortion adds to their burden. If the woman decides to abort, an emotional price is also paid in the grieving process. Significance of the Problem L i t t l e research has been done on abortions for genetic reasons. The small amount of research that has been done on this subject supports the notion that grief reactions do occur (Blumberg, Golbus & Hanson, 1975; Donnai, Charles, & Harris, 1981; Lloyd & Laurence, 1985). Conflict in the preabortion period is tentatively Identified as a risk factor for grief in the postabortion period (McCall, 1987; Friedman, Greenspan, Mittleman, 1974; Lazarus, 1985; Payne, Kravitz, Notman, & Anderson, 1976). No research to date identifies confl ict in the decision-making process prior to the abortion as an indicator of women at risk for intense grief postabortion. Considering the 3 increasing numbers of women who undergo prenatal diagnosis and the percentage of those who abort, i t is important to identify antecedent risk factors for those who may suffer from intense grief . Health care resources can then be selectively apportioned to those in need. Conceptual Framework For women at risk of having a defective fetus, decisions about becoming pregnant, having prenatal diagnosis, and terminating the pregnancy are d i f f i c u l t . Unfortunately, the whole process may culminate in the painful process of grieving when the woman decides to terminate a wanted pregnancy where the fetus is defective or potentially defective. Janis and Mann's (1968) theory of confl ict in the decision-making process and the University of Bri t i sh Columbia Model of Nursing (Campbell, 1987) frame the concepts of confl ict and grief used in this study. Conflict The rea l i ty of a wanted/unwanted pregnancy can be examined using the idea of decision making under conf l ic t . Early confl ict studies by Lewin (1935) conceptualize the "life space" as the total milieu in which a person behaves; and within this milieu, positive and negative valences motivate a person toward or away from a specific goal. Behavior is considered to be a function of the person and his/her environment; therefore, a woman terminating or continuing her pregnancy acts according to the positive and negative valences within her l i f e space. Janis and Mann's (1968) theory of confl ict in the decision-making process depicts five sequential stages which a 4 person goes through in making a successful decision. Each stage w i l l be discussed in detai l in relation to women deciding whether or not to terminate or continue their pregnancies. In stage one, the decision maker is exposed to new information requiring some form of action. The acknowledgement that the fetus is defective or could be defective constitutes stage one and involves the beginning of a temporary personal c r i s i s . The inconsistency between the new information and the woman's desire to have a healthy baby generates an acute confl ict about the pregnancy. The f i r s t stage in the decision-making process ends when the woman has consciously realized and accepted the prenatal diagnosis. In stage two, alternative forms of action are developed. The woman considers alternatives "to have a good chance of averting or minimizing the losses made salient by the challenge" (Janis & Mann, 1968, p. 330). The woman considers two possible outcomes—continuation of the preganancy or abortion. Abortion is not considered by some even when the pregnancy is unwanted because of strong personal or religious convictions, pressure of social norms, and/or the opposition of the partner (Bracken, 1974). Other factors supporting abortion as a viable alternative, such as the lack of social and economic support for disabled persons, may outweigh the personal and religious disapproval of abortion. Stage three involves the evaluation of each alternative course of action. The woman selects the best alternative according to her personal c r i t e r i a . To do this she scans and 5 weighs each alternative. Janis and Mann (1968) present a balance sheet schema with each alternative posit ively and negatively evaluated. Four main categories are considered in the balance sheet with respect to anticipated favorable or unfavorable consequences of choosing a given alternative. Anticipated u t i l i t a r i a n gains or losses for self , anticipated u t i l i t a r i a n gains or losses for significant others, anticipated approval or disapproval from self , and anticipated approval or disapproval from significant others are considered. The confl ict a woman experiences when she must decide between abortion or continuation of a pregnancy where the fetus is defective or potentially defective represents the presence of two incompatible response tendencies. She experiences a high level of confl ict i f both tendencies are strong and her balance sheet includes a great number of powerful positive and negative forces (valences) (Bracken, 1974). Bracken states that "higher levels of confl ict would result in higher levels of tension, sleeplessness, loss of appetite, and loss of sexual interest" (p. 33) . In stage three "bolstering" occurs. Bolstering is a process whereby the decision maker rehearses the role of having actually made a decision (Bracken, 1974; Janis and Mann, 1968). The woman may consider what her personal response to a disabled child would be and the responses of significant others. If this role does not feel comfortable, she may imagine what i t would be l ike to abort a fetus which may have been the outcome of a planned pregnancy 6 and in which considerable attachment may have already occurred. In stage four, the decision maker commits herself to the chosen outcome. The chosen course of action receives some psychological investment and the decision maker seeks support for i t (Bracken, 1974). She may inform significant others, such as family members or friends. Bolstering of the chosen alternative continues perhaps by talking with those who have aborted for a similar reason or by reading art ic les on the topic. Usually, to avoid negative feedback, she speaks last to those who may be c r i t i c a l of her chosen action. The purpose of the bolstering is to increase the spread between the alternatives and to minimize postdecisional regret (the continuation of confl ict after the action is taken) (Bracken, 1974). Bracken suggests that postdecisional regret is l ike ly when bolstering of both alternatives, rather than just one, happens in stage three. In stage f ive, there Is adherence to the decision. The woman may reach this stage prior to the abortion or in the postpartum period. Challenging information, such as opposing attitudes or beliefs of society or significant others, is discounted or minimized. Janis and Mann (1968) suggest that "proselytizing to others about the wisdom of the choice" (p. 331) assists in confl ict resolution. Janis and Mann (1977) suggest that the quality of the decision may be measured by examining the process used to decide on a chosen course of action. A high quality decision would have considered a l l possible pregnancy outcomes and a l l the positive and negative consequences of each outcome. The woman would seek 7 out new Information for further evaluation of alternative outcomes and experts would be consulted. Then a l l alternatives, even those which were considered unacceptable at f i r s t , are re-evaluated. She plans for anticipated problems and rehearses her response to them. For example, she rehearses how she would react to others who disagree with her decison to abort a defective or potentially defective fetus. In the event that a l l possible pregnancy outcomes and a l l positive and negative consequences of each outcome are not considered in the process of decision-making, Janis and Mann (1968) suggest that postdecisional regret is possible. Postdeclsional regret occurs when the decision maker is not able to discount the challenges of attitudes and behaviors of significant others. Since the abortion is irrevocable, the only route for the woman to overcome the regret is to crystal l ize or bolster her proabortion attitudes or attitudes related to disabled persons. Postdecisional regret is experienced as unpleasant tension, which is the same unpleasant tension experienced in the predecisional stages when negative consequences of the act are anticipated. Janis and Mann state that the decision should be psychologically resolved prior to the pregnancy termination or severe postdecisional regret w i l l be experienced. The five-stage sequence "is intended as a schema for a microanalysis of the positive and negative incentives that enter into a predecisional choice (in Stage 3) and of the new incentives added by social commitments (in Stage 4), a l l of which 8 are assumed to influence the long-run s tab i l i t y of the decision (Stage 5)" (Janis & Mann, 1968, p. 335). An unstable decision is easi ly challenged leading the decision maker back into the confl ict mode. Unpleasant tension is the result . Decisions made hasti ly in crises situations are more vulnerable to challenges (Janis & Mann, 1968), and women in situations where the fetus is diagnosed with an abnormality and the fate of the pregnancy must be determined quickly are in such vulnerable situations. Following the abortion, the s tab i l i ty of the decision or the resolution of the confl ict is hypothesized in this research to influence the intensity of grief postabortion. The unpleasant tension experienced when a confl ict is unresolved continues postabortion and negatively affects the woman's grief over the loss of the fetus. Tension and loss are concepts in the University of Br i t i sh Columbia Model for Nursing (Campbell, 1987), which wi l l be described. University of Br i t i sh Columbia Model for Nursing The University of Br i t i sh Columbia Model for Nursing (Campbell, 1987) (referred to as the Model) views an individual as a behavioral system made up of nine subsystems: achieving, affective, ego-valuative, excretory, ingestive, protective, reparative, respiratory, and satiat ive. Each of the nine subsystems is responsible for the satisfaction of one basic human need based on a process in which goal achievement is the outcome. Each subsystem is viewed as a l i f e space as described by Lewin (1935) in his concept of f ie ld theory. Major concepts of significance in the Model with relevance to this study are the 9 concepts o£ l i f e space, force, tension, and loss. Life space "represents the relationship of factors and influences (need, a b i l i t i e s , goal, forces) that determine the behaviour of the subsystem at any given moment" (Campbell, 1987, p. 36). Bigge (1982) states that the l i f e space "represents the total pattern of factors or influences that affect an individual's behavior at a certain moment or longer juncture of time" (p. 109). These factors or influences are considered to be positive and negative valences which motivate a person toward or away from a specific goal (Lewin, 1935). In the Model, these valences are termed "forces." A force is "a determinant of movement toward or away from a goal; forces may arise from the need and ab i l i t i e s of the subsystems (personal); from other behavioural systems (sociocultural); or from the impersonal aspects of a situation (impersonal)" (Campbell, 1987, p. 36). When a woman is deciding to terminate a pregnancy, forces may arise from her personal beliefs or morals in relation to abortion or those beliefs related to disabled persons. She may continue the pregnancy with a defective or potentially defective fetus considering the influence this would have on the meeting of her personal needs. Other behavioral systems may include significant others such as her husband, family members, or other important persons in her l i f e . Impersonal forces could be the lack of personal funds to support a disabled chi ld or society's lack of support for disabled persons. Positive and/or negative forces that are within the woman's l i f e space influence her decision to either 10 continue or terminate the pregnancy. A concept discussed in Janis and Mann's (1968) decision-making theory which is a key concept in the Model is tension. Tension, according to the Model is a "need-related sensation that is experienced by a subsystem and varies in intensity with the degree of need satisfaction" (Campbell, 1987, p. 37). The tension is experienced in the predecisional period when the woman anticipates the negative consequences of the decision. Indicators of this tension are sleeplessness, loss of appetite, and loss of sexual interest (Bracken, 1974), and these indicators are again evident after the abortion i f the woman suffers from postdecisional regret. This postdecisional tension is compounded by the tension experienced when basic human needs are unmet. For example, need satisfaction may not occur in the achieving, sat iat ive, and/or ego-valuative subsystems due to the losses incurred when the pregnancy is terminated. According to the Model, loss is "being without that which has or could have had meaning for the individual" (Campbell, 1987, p. 37). Rando (1984) describes two losses which are relevant for the pregnant woman aborting. They are physical losses and symbolic losses. The physical losses would be the actual loss of the fetus and the physical aspects of the pregnancy such as the enlarged breasts and uterus. Symbolic losses would include a l l "fantasies, needs, hopes, dreams, and expectations placed upon this child-to-be" (p. 57), which would be lost . Another symbolic loss could be the perceived loss of the a b i l i t y to produce a healthy baby. Rando emphasizes that "each loss must be viewed from the bereaved person's own frame of reference" (p. 48), which regards the meaning and significance of the particular pregnancy. Grief , which is not included in the Model, is closely related to the loss concept and is the group of responses indicative of a significant loss. Grief w i l l now be reviewed. Grief is defined by Carlson (1970) as the "series of emotional responses that follow the perception, or anticipation, of a loss of one or more valued or significant objects" (p. 96). Others, Peppers and Knapp (1980b), Kennell, Slyter, and Klaus (1970), Parkes (1986), Peretz (1970), Lindemann (1944), and Rando (1984) Include physical and social responses to loss as well . Peppers and Knapp's l i s t of grief responses includes emotional, physical, and social effects. Emotional or psychological effects, according to Peppers and Knapp, are denial, gu i l t , resentment, bitterness, depression, time confusion, i r r i t a b i l i t y , sadness, sense of fa i lure , concentration problems, failure to accept rea l i ty , and preoccupation with thoughts and memories of the deceased. Physical effects are exhaustion, loss of appetite, sleeping problems, lack of strength, weight loss, headache, blurred vis ion, breathlessness, and palpitations. The social effects are withdrawal from participation in normal ac t iv i t i e s , i solat ion, and possibly, physical separation from the spouse. Although grief reactions vary in intensity and degree, Lindemann, Parkes, Peppers and Knapp, and Peretz have described the typical grief reaction in terms of a specific duration. Six weeks has been determined as the average length of time for grieving to take place and for a return to the level of functioning prior to the loss to occur (Lindemann, 1960; Parkes, 1965; Peretz, 1970). However, the psychological reactions such as the mental pain or crying seem not to leave the person entirely. There are times when the person is reminded of the loss and may experience a grief reaction past this six-week period (Peppers & Knapp, 1980b; Parkes, 1965). Peppers and Knapp refer to this as "shadow grief," which does not dominate the person's existance. Caplan (1974) considers a loss as a cr i s i s which may last from four to six weeks; and by the end of that time, the tension abates and there is a return to a steady psychological state. Caplan states there can be either an adaptive (healthy) or maladaptive response to the c r i s i s . "If i t is maladaptive, he emerges with a greater vulnerabil i ty to mental disorder, which shows i t se l f either in the near future or after similar responses to subsequent crises has taken him s t i l l further along the road of irrat ional i ty" (Caplan, p. 202). In summary, according to Caplan, a significant loss init iates a disorganization of usual functioning which is self- l imited and gradually leads to a reorganization of l i f e . The University of Bri t i sh Columbia Model for Nursing (Campbell, 1987) and Janis and Mann's (1968) theory of confl ict in decision-making provide the framework for this study. Life space, force, tension, and loss are relevant concepts in the Model, and their roles in this study have been described. Although grief is not a concept in the Model, i t is closely related to loss and has been reviewed. Janis and Mann's 13 theory o£ confl ict In decision-making provides the background knowledge necessary to understand the l i f e space of the woman undergoing a pregnancy termination for genetic indications and the determinant forces in her l i f e space, and the unpleasant tension she experiences. Statement of Purpose The purpose of this study was to determine i f a relationship exists between the degree of maternal confl ict experienced in the decision-making process prior to a genetically indicated abortion and the intensity of grief experienced postabortion. Research Questions 1. What degree of confl ict do women experience after the fetal diagnosis is made and prior to the abortion? 2. What intensity of grief do women experience following an abortion for genetic indications? 3. What is the relationship between the degree of confl ict and the intensity of grief? Definition of Terms 1. Abortion for genetic indications - an induced abortion because of a defective or potentially defective fetus (chromosomal anomaly, neural tube defect, skeletal or major organ malformation, teratogen exposure with the potential to affect the fetus) 2. Maternal confl ict - a situation where the forces acting on the person are opposite in direction and about equal in strength (Lewin, 1935) 3. Maternal grief - "a highly variable emotional, 14 psychological, physical, and social response to the loss of a loved one through death" (Peppers & Knapp, 1980b, p. 27) Assumptions 1. A pregnancy is a complex emotional event in the l i f e of a woman. 2. An abortion for genetic indications is a c r i s i s in the l i f e of a woman. 3. Conflict is experienced in the decision-making process preabortion. 4. Grief is experienced in the postabortion period. Limitations 1. The general izabll i ty of this study is limited by the fact that a l l data were collected in one medical genetics department; therefore, any conclusions may be applicable only to this particular population and sample. 2. The small sample size limits the generalizabll i ty of the conclusions. Organization of the Following Chapters This study report is organized into five chapters. Chapter one has outlined the context of the problem, the conceptual framework, and the purpose of the study. Chapter two presents a review of selected l iterature on confl ict and maternal grief of women aborting for genetic indications. Chapter three describes the research methodology, data col lect ion, and analysis. Chapter four includes the findings and discussions of the findings. A summary is presented in chapter five with recommendations for nursing education, practice, and research. CHAPTER TWO Review of Related Literature Introduction This l i terature review has been organized to outline the two major concepts of this study, which are confl ict and grief . The f i r s t group of studies describes what is known about confl ict when women decide to abort a fetus for genetic reasons. The second group of studies describes the grief of women experiencing an elective abortion for genetic reasons. Conf1let A few studies have been done to study confl ict in the decision-making process either before prenatal diagnosis was done or before the abortion. The findings in a l l these studies concluded that the decision to abort was not easy because of the personal dilemma of wanting a child and moral beliefs about abortion and disabled persons. The women considered the burden of bearing a defective child and the burden on society as well . Davies and Doran (1982) interviewed women seeking antenatal genetic counselling because of their advanced maternal age to identify the factors involved in their decision to seek counselling. The sample included 66 women who had amniocentesis. Eighty-nine percent of the 66 women sought prenatal counselling because of their age and the possible risks associated with advanced maternal on the development of the ch i ld . The women perceived having a Down's syndrome child as being a burden on their personal lives and a burden on society. Their personal finances were also considered. Thirty-one percent were concerned about the affected chi ld's well-being. Fifty-three percent anticipated that the decision to abort would be d i f f i c u l t . The two major reasons expressed by these women that made the decision d i f f i c u l t were moral beliefs and a desire for a ch i ld . For a few, fetal movement made the decision d i f f i c u l t . A large number had a religious a f f i l i a t i o n , but the women reported they were not influenced by this a f f i l i a t i o n . Finley, Varner, Vinson, and Finley (1977) studied women who had either continued or terminated their pregnancies after having prenatal diagnosis. One hundred fifty-seven of 196 women completed the questionnaire. Ten women had positive prenatal diagnoses. The researchers found that one of the major concerns of women prior to amniocentesis was the poss ib i l i ty of having to make a decision about abortion. Forty-nine percent were concerned about having to make this decision. If they were to have the test again, 46% responded that they would be concerned about deciding on abortion. Seventy-one percent planned on ending the pregnancy i f the test results were positive; 6% would not have an abortion; and 23% were undecided. Robinson, Tennes, and Robinson (1975) studied women one year after amniocentesis to better understand the emotional aspects of the experience. Thirty-three women were asked to participate, but only 22 did . The subjects were interviewed with open-ended questions. Generally, the researchers concluded that none of the women took the abortion issue l ight ly . On a personal level , the women considered the burden of having a defective child on their l ives , marriages, and families. They considered their own and 17 the fami ly ' s a b i l i t y to cope with a defect ive c h i l d , and the s o c i a l , f i n a n c i a l , and phys ica l stresses of having a disabled c h i l d i n the fami ly . From a s o c i e t a l perspect ive , some women were influenced by an "unwillingness knowingly to bring a defect ive c h i l d into the world" (Robinson et a l , p. 103). Att i tudes towards a repeat amniocentesis were favorable . Twenty would repeat and three recommended amniocentesis to t h e i r f r i e n d s . A weakness of the study, which the researchers acknowledged, was the unknown responses of the nine who d id not p a r t i c i p a t e . Furlong and Black (1984) explored the experiences and coping s trateg ies of fami l ies of women who terminated a pregnancy fol lowing detect ion of a serious defect in the fetus . The focus of the study was on the family , p a r t i c u l a r l y s i b l i n g s , but data uncovered issues experienced by the parents re la ted to dec i s ion making. The researchers conducted semi-structured interviews on a small convenience sample of 15 f a m i l i e s . For the parents questioned, the abort ion represented a pa in fu l and serious episode in t h e i r l i v e s . A l l couples reported that there was agreement on the dec i s ion to abort , but between mothers and fathers there was a d i f ference on r a t i n g the d i f f i c u l t y of the decision-making experience. Nine of the f i f t een mothers reported that the dec i s ion was d i f f i c u l t , and one reported i t was at least somewhat d i f f i c u l t . Two of the s ix fathers f e l t the dec i s ion was d i f f i c u l t , and four sa id i t had not been d i f f i c u l t . Comments suggested that dilemmas experienced by the parents stemmed from personal dilemmas rather than uncertainty and confusion about the 18 fetal diagnoses or prognoses. Fletcher (1972) Interviewed 25 couples to determine the ethical issues parents experienced when they have prenatal diagnosis and genetic counselling. He described two sources of human confl ict which existed. They were: f i r s t , the inner confl ict within the person and second, the confl ict between self and community. The f i r s t source of confl ict would arise amongst the inner loyalties to self , family, and the unborn chi ld; the second source of confl ict would arise between the person and the significant community (for example, the church). Moral suffering ensued when the parents wanted a child desperately, but not a defective ch i ld . Flether stated that the parents were "caught between the rightness of protecting their families from the great strains which genetic disease . . . [placed] upon them, and the rightness of unconditional caring for the l i f e of their conceived chi ld " (p. 479). Grief A variety of responses to the loss of a defective or potentially defective fetus have been documented in the l i terature . Some responses included depression, social disruption, gu i l t , and acute grief . These responses were but a few of the characteristics of the classic grief reaction described by Parkes (1986) and Lindemann (1944). Donnai, Charles, and Harris (1981) conducted an exploratory study using unstructured interviews to e l i c i t data on the psychological and social reactions of those undergoing termination of pregnancy for genetic reasons. The convenience sample consisted of twelve women. The researchers concluded "that the small numbers of women undergoing termination of a planned or wanted pregnancy after prenatal diagnosis . . . [constitued] a high risk group, vulnerable to depression and social disruption" (p. 622). However, this stated conclusion did not seem to be consistent with the data. When interviewed, seven patients reported a good emotional recovery; three considered the recovery fa i r ; and two continued to be troubled by "a disturbing and distressing reaction" (p. 622). A l l subjects found the interview an emotional s tra in . Although the study was anecdotal, i t did support the notion that psychological sequelae, either minimal or severe, did exist . Blumberg, Golbus and Hanson (1975) studied 13 couples following abortion for genetic reasons using psychometric testing and psychiatric interviews. The purpose was to determine i f the couples were at risk for psychological trauma following the abortion. The researchers stated that the women experienced a high incidence of depression (92%), which was greater than that usually associated with elective abortion for psychosocial indications or with delivery of a s t i l l b o r n . The comparisons were made to research findings in separate studies. The methods used to collect data were interviews with open-ended questions and the Minnesota Multiphasic Personality Inventory (M.M.P.I.) , which evaluated individual personality status and emotional adjustment. Data from case histories , M.M.P.I .s , and interviews were analyzed resulting in preliminary findings suggesting there was a high incidence of psychological trauma. Depression, 20 gui l t , undesirable marital consequences such as separation, and "flash-backs" of emotions were related to the experience. Lloyd and Laurence (1985) did a retrospective study to examine the sequelae and support after termination of pregnancy for fetal malformation. Forty-eight women were interviewed at home immediately after the termination, at six weeks, and at six months after the termination. Seventy-seven percent of the sample suffered an acute grief reaction. The six-month interviews revealed that 46% were symptomatic. Symptomatic meant the women required psychiatric support. Jones et a l (1984) interviewed 12 couples plus two women who had a midtrimester therapeutic abortion following an amniocentesis to discover individual responses as well as perceptions to the process of pregnancy, amniocentesis, therapeutic abortion, and sequelae. Generally, the results indicated the respondents coped well with the experience. Seventy percent of the couples described their marital relationship as closer and few suffered long-term deleterious effects. The researchers suggested that the study results may not be accurate considering the sample size and a t t r i t i o n . Of 36 couples invited to participate, 4 relocated, 9 declined, and 9 were unavailable for follow-up. Only 2 women plus 12 couples remained in the study. The differences between the sample and the decliners, relocaters, and those unavailable for follow-up were unknown. The researchers suggested "the poss ib i l i ty that couples who . . . [agreed] to participate may have fewer conflicts and less emotional trauma in their lives than those who declined 21 participation" (p. 255). Summary The l i terature review has explored what is known about confl ict and grief as experienced by women aborting for genetic indications. Several studies researched confl ict for those who have prenatal diagnosis and those who terminate pregnancies for genetic reasons. A l l studies supported the idea that grief postabortion for genetic indications did exist . Further research is needed to learn about confl ict preabortion and grief postabortion and the relationship between the two concepts. 22 CHAPTER THREE Methodology Introduction This descriptive, correlational study was designed to describe the relationship between confl ict and grief . The research questions guiding the study methodology included: 1) What degree of confl ict do women experience after the fetal diagnosis is made and prior to the decision to abort? 2) What intensity of grief do women experience following an abortion for genetic indications? and 3) What is the relationship between the degree of confl ict and the intensity of grief? This chapter wi l l discuss the process for obtaining study participants, the Instruments, and the methods of data analysis. Ethical considerations and mechanisms for the protection of human rights w i l l be presented. Process of Obtaining Study Participants A convenience sample of nine women who met the following c r i t e r i a comprised the sample for this study. The woman had to have had an induced abortion because of a fetal anomaly or the potential to have a fetal anomaly. The woman's pregnancy could be of any gestational age. The woman had to be able to read and write English. I n i t i a l contact with potential participants was made through the medical genetics department in a major urban hospital . A staff person identified suitable candidates who met the sample c r i t e r i a . The Information letter (Appendix A) and the consent to participate (Appendix B) were given to the woman when she was In the medical genetics department. A self-addressed, stamped envelope was enclosed so the woman could read and sign the consent at home and then return i t to the researcher. The questionnaire (Appendix C) was mailed to each consenting participant six weeks postabortion to be completed in its entirety then. At f i r s t , there were few respondents and i t was felt that at i n i t i a l contact the woman might have been too distraught to sign the consent to participate. So, potential respondents were asked to sign a consent to be contacted (Appendix D). This appeared to be acceptable to both the staff approaching the women and the women themselves. It took six months for nine subjects to volunteer and complete the questionnaires. Instruments The questionnaire (Appendix C) had three parts. The f i r s t part collected demographic information and an obstetrical history; the second part collected data on conf l ict ; the third part collected data on grief Intensity. To measure conf l ic t , a scale designed by Bracken (1974) was used. This scale was designed to determine i f confl ict was an intra-psychic process delaying women's decision to abort for personal reasons. The original study population included 328 women, both blacks and whites, presenting themselves to private abortion c l in ics in New York and New Haven. The results of Bracken's study concluded that those women with increased confl ict delayed in seeking an abortion. Bracken (1974) did some r e l i a b i l i t y testing when he f i r s t 24 designed the scale. To measure internal consistency, he did intercorrelations of variables in the confl ict scale with the overall confl ict score. The correlations ranged from .52 to .79 (happy-sad, .52; times changed mind about the abortion, .62; ki l l ing-not k i l l i n g , .52; accept-reject, .67; re l i e f -d i s tress , .78; ease of abortion decision, .79). Comparing the questions with personal observations and anecdotal and research-based l i terature , the questions had content va l id i ty . Bracken (1974) used a seven-point semantic d i f ferent ia l technique to measure the degree of conf l ic t . The confl ict score was the mean score of the response to six items (Appendix C) and ranged from a low confl ict score of 1.0 to a high of 7.0. Women were considered to be In a high state of confl ict i f they reported being i n i t i a l l y very happy about the pregnancy, distressed over and I n i t i a l l y rejected the abortion, fe l t that they were k i l l i n g their ch i ld , had d i f f i cu l ty deciding, and frequently changed their minds. Because of the present debate over the status of the fetus in terms of personhood and the emotionality of this debate (Beauchamp & Walters, 1982), the wording of the question on k i l l i n g or not k i l l i n g the child was changed. The changed wording reflected the intent of the original question, but released the question of the criminal Intent of "ki l l ing" attached to i t . The question then read: "Do you think an unborn fetus is or is not a person?" No other changes to the questions on confl ict were made. To measure internal consistency of the confl ict scale in the current study, each item's score was intercorrelated with the overall confl ict score excluding the item being tested. The correlations ranged from 0.112 to 0.698 (happy-sad, 0.419; re l ie f -d i s tress , 0.112; accept-reject, 0.662; person-not a person, 0.505; ease of abortion decision, 0.674; times changed mind about the abortion, 0.698). The second question on the f i r s t reaction to the thought of terminating the pregnancy being either re l i e f or distress was discarded in determining the overall discrimination index because of i ts low value. The Hoyt estimate of r e l i a b i l i t y was f ina l ly determined to be 0.95. The Hoyt estimate of r e l i a b i l i t y is an estimate of homogeneity of the items in the test which examines the extent to which a l l the items in the instrument measure the same construct (Devore & Peck, 1986). The wording of the question on the status of the fetus had been changed in the current questionnaire, but did not appear to affect the responses when compared to Bracken's r e l i a b i l i t y score, which was 0.52 compared to 0.674 in the current study. To measure grief , an 18 item Grief Intensity Scale designed by Peppers and Knapp (1980a) was used (Appendix C). The scale expanded on the research done by Kennell, Slyter, and Klaus (1970) in the development of a grief score. Kennell et a l interviewed women who had experienced a neonatal death. They discovered six variables which were part of the grieving process—sadness, loss of appetite, inab i l i ty to sleep, I r r i t a b i l i t y , preoccupation, and inabi l i ty to return to normal ac t iv i ty . After reviewing the l iterature on grieving, Peppers and Knapp expanded the questionnaire to include other emotional, psychological, physical, and social responses. The scale directed the subjects to rate themselves on a scale from 1 (no problem) to 9 (extreme d i f f i cu l ty) on each variable yielding scores ranging from 18-162. The women were asked to rate their grief immediately after the loss and some time after the loss. This time ranged from 6 months to 36 years with a mean of 8.1 years and a median of 5.9 years. The Grief Intensity Scale had been used in numerous studies, but l i t t l e data on r e l i a b i l i t y and va l id i ty were available (McCall, 1988). McCall used the scale to measure grief intensity for a study population consisting of 15 women who had experienced miscarriage. Prior to using the scale, McCall determined the alpha coefficients to be .88 and .81 giving the scale a high internal r e l i a b i l i t y . Comparing the items in the questionnaire with personal observations and anecdotal and research-based l iterature on the topic, the questions had content va l id i ty . The r e l i a b i l i t y of the questionnaire in the present study was examined after the subjects returned the questionnaires. The Hoyt estimate of r e l i a b i l i t y was f ina l ly determined to be 0.96. Three of the eighteen items in the questionnaire had low or negative discrimination indices when compared with the overall grief score excluding the items anlyzed; therefore, these scores were discarded. The items discarded were eight, twelve, and thirteen. The remaining discrimination indices were as follows: the sadness item was 0.683; loss of appetite, 0.896; i r r i t a b i l i t y , 0.766; sleeping problems, 0.914; d i f f i cu l ty concentrating, 0.834; preoccupation with thoughts and memories of 27 your ch i ld , 0.703; depression, 0.857; anger, 0.806; gu i l t , 0.821; problems returning to usual ac t iv i ty , 0.926; time confusion, 0.887; repetitive dreams about the baby, 0.870; exhaustion, 0.903; lack of strength, 0.858; wondering about what went wrong, 0.403. Data Analysis The demographic information and obstetrical history gathered from the questionnaire was used to describe the sample's characterist ics . Research questions 1 and 2. The confl ict and grief intensity scale from each participant was calculated and examined for frequency distr ibut ion, and measures of central tendency and v a r i a b i l i t y . Research question 3. Since the sample was small and distribution free, the relationship between confl ict and grief was analyzed by plotting grief against confl ict on a scatter plot. The scatter plot provided an informative picture of the bivariate numerical data (conflict and grief) to determine the possible relationship of the variables (Devore & Peck, 1986). Ethics and Human Rights The rights of participants were safeguarded in the following ways. Confidentiality was maintained. Each participant's name and a code were l i s ted . Code numbers were placed on questionnaires that the research participants completed. The l i s t with the names and codes were destroyed when the study was complete. At no time did names appear or wi l l they appear in any published or 28 unpublished material. Data were reviewed only by the investigator. An informed consent was obtained prior to data col lect ion. The letter of information described the study and the subject's role in the study. The study participant was given the opportunity to question the researcher about the study. The principle of autonomy was maintained for the subject. If at anytime the subject wished to withdraw from the study, she could do so. The subject was reminded that her actions regarding the study would not jeopardize any health care being received by her or other related persons. Summary The methodology used in this descriptive, correlational study involved two data col lection instruments. Each tool added information to the data base which was then analyzed according to established s ta t i s t i ca l methods. Ethical and human rights were also discussed. CHAPTER FOUR Presentation and Discussion of the Findings Introduction This chapter is divided into four sections. The f i r s t section describes the characteristics of the study participants. The next three sections present an analysis of the data responding to the three research questions. Each section is followed immediately by a discussion. The Study Participants  Age, Marital , and Educational Status The sample consisted of nine women whose average age was 33.4. The ages ranged from 25 to 42 years. The median was 35 years. Eight of the subjects were married with one in a common-law relationship. Education levels varied from highschool (44%), to postsecondary (33%), and university education (22%). Past Obstetrical History A l l but one of the subjects had a previous pregnancy, and a large percentage (66%) had experienced previous pregnancy losses. Six out of nine (66%) had an elective abortion; two out of nine (22%) had a miscarriage; and two out of nine (22%) had a child die . Whether or not this was a prenatal death was not determined. Three women (33%) had experienced several previous losses (miscarriage, death, and/or elective abortion). Five (55%) had children l iv ing at home with them. One woman (11%) had a history of d i f f i cu l ty getting pregnant in previous pregnancies. Characteristics of This Pregnancy Eight of the nine pregnancies were planned (88%). A l l 30 respondents denied any d i f f i cu l ty achieving pregnancy this time. Four out of nine (44%) had felt fetal movement. The average time when the women discovered they were pregnant was six weeks. The women either suspected they were pregnant or had the pregnancy medically confirmed at that time. The number of days between the day the subjects were told something was wrong with the fetus and the date of the pregnancy termination ranged from two to twenty days. The average length of time was 11.9 days with a median of 7 days. The average time for the pregnancy termination was 18.3 weeks with the range from 13 to 27 weeks and the median 18.5 weeks. A l l subjects had an ultrasound done. Ultrasound testing was the primary diagnostic tool for five out of nine (55.5%) subjects. Two (22.2%) had chorionic v i l l i sampling followed by an amniocentesis. Three (33.3%) had only chorionic v i l l i sampling done. Research Question One: What degree of confl ict do women  experience after the fetal diagnosis is made and prior to the  abortion? To determine the degree of confl ict experienced in the decision-making process prior to the pregnancy termination, a confl ict scale developed by Bracken (1974) was used. The subjects were sent the questionnaires six weeks posttermination and asked to judge their confl ict retrospectively. The confl ict score for the current study was 23.88 with a standard deviation of 8.04. The lowest score was 14.00 and the highest score was 35.00. The lowest score obtainable was 5, and the highest was 31 35. Comparing the current study results to Bracken's (1974) study results , the confl ict scores were s imilar . Bracken's study population included women aborting for personal reasons. Bracken's average confl ict score was 25.0, which he considered to be high. Bracken's results indicated there was a greater level of confl ict associated with second trimester abortions with a decline in confl ict at 18 weeks gestation. The time of pregnancy terminations in the currect study averaged 18.3 weeks with a median of 18.5 weeks. Sjogren and Uddenberg (1988) supported the idea of confl ict in decision making during prenatal diagnosis. The researchers provided evidence that considerable deliberation happened before having prenatal diagnosis; however, this did not discourage the women from having prenatal testing done. Many of the women in Sjogren and Uddenberg's study postponed the decision to have a legal abortion unt i l they had reviewed the test results . One woman had commented that she was sure she would abort a defective fetus but hesitated when she saw signs of l i f e on the ultrasound screen. An interesting finding in Sjogren and Uddenberg's study was the lack of autonomy the women had in deciding to proceed with prenatal diagnosis. Although the women fe l t free to undergo prenatal diagnosis, they considered i t d i f f i c u l t to refrain from prenatal diagnosis when i t was offered. Sjogren and Uddenberg suggest that society demands that women use prenatal diagnosis and abort defective fetuses to save society the responsibil i ty of caring for a disabled ch i ld . Furthermore, Sjogren and Uddenberg's results Indicated "that the decision making, even i f i t may seem rather easy, is often characterized by deliberation and ambivalence (p. 222)." The ethical and moral issues surrounding pregnancy terminations for genetic reasons affect the confl ict experienced. The ethical issues of selective abortion discriminating against the disabled (Smith, 1981; Sjogren & uddenberg, 1988) and violat ing fetal rights (Dyck, 1971; Aumann, 1988) might have been d i f f i c u l t to handle in the decision-making process. Moral and ethical issues may be clouded when the woman's religious beliefs are considered in the process of decision-making. Decision making may be made d i f f i c u l t when the results of prenatal diagnosis are not black and white. Ambiguity about the diagnosis may cause anxiety such as in the situation where an extra Y chromosome is present (Beeson, Douglas, Lunsford, 1983). Only one participant stated that there would be no chance for her fetus to survive; and her confl ict score was above the average and her grief score was average. Research Question Two: what intensity of grief do women  experience following an abortion for genetic reasons? To determine the intensity of maternal grief posttermination, the grief measurement scale designed by Peppers and Knapp (1980a) was used. The subjects were sent the questionnaires six weeks after the termination and asked to complete the questionnaires to determine their grief Intensity at that time. Descriptive s tat i s t ics were used to analyze the data. The average number of grief points was 61.44 with a standard 33 deviation of 33.69. The range was 30 to 133. The lowest score possible was 15, and the highest score was 135. Peppers and Knapp (1980a) and McCall (1988) were the only published studies using the grief intensity scale designed by Peppers and Knapp. Peppers and Knapp's study population included those women who experienced miscarriages, s t i l l b i r t h s , and neonatal deaths. Peppers and Knapp asked women who had experienced a perinatal death to score their grief retrospectively when they had the pregnancy loss and presently. The time after the loss was from six months to 36 years with an average of 8.1 years. The current study's results were higher six weeks posttermination than the later results collected six months to 36 years. In McCalls' (1988) study, the grief intensity scores ranged from 28 to 118 points (median 58, average 62.9, standard deviation 26.7) at the time of miscarriage. Four to six weeks later the scores were s ignif icant ly different (median 28, average 32.6, standard deviation 12.4). The grief points in the current study were greater six weeks after loss than those points determined six to ten weeks after miscarriage in McCall's study. The average grief score for the current study was high and may be related to gestational age. The average gestational age was 18.3 weeks when the pregnancy was terminated. Toedter, Lasker, and Alhadeff (1988) did a longitudinal study to determine the factors affecting grief resolution following spontaneous abortion, fetal or neonatal death, or ectopic pregnancy and determined that the greater the gestational age the more grief 34 experienced. Kirkley-Best (1981) studied prenatal bereavement and Theut et al (1989) studied perinatal bereavement in women who had experienced miscarriages, stillbirths, and neonatal deaths and also found evidence to support the positive relationship of increased gestational age and grief. Peppers and Knapp (1980a) found no difference in the grief scores of women experiencing miscarriages, stillbirths, or neonatal deaths; however the scores were gathered up to 36 years after the loss event. Theut et al speculate that "perhaps bereavement for early loss and bereavement for late loss become indistinguishable over time (p. 638)." Of the studies cited and the current study, there was more grief experienced for later losses. The high grief scores in the current study could be related to the later age of the women (the average age was 33 years) and the fact that for four of the nine women (44%) this was their first planned pregnancy. Silvestre and Fresco (1980) studied the reactions of older women to prenatal diagnosis. More than half were expecting their first child and expressed how precious the child was considering their advancement towards infertility. These women did not experience the pregnancy as real until after the results of the tests were known. Then they announced the pregnancy and some said they even felt the fetus after the test, but not before. Mansfield and Cohn (1986) further discussed the dysfunctional stress that older women experienced because they failed to follow traditional youthful childbearing. The question remains whether or not impending infertility related to increasing age or the dysfunctional stress felt by older women i n f l u e n c e d the g r i e f these women e x p e r i e n c e d i n the c u r r e n t s t u d y . Q u e s t i o n T h r e e : What i s the r e l a t i o n s h i p between the degree  of c o n f l i c t and the i n t e n s i t y of g r i e f ? The g r i e f and c o n f l i c t s c o r e s were p a i r e d and p l o t t e d on a s c a t t e r d i a g r a m . The s c a t t e r p l o t showed a c u r v i l i n e a r r e l a t i o n s h i p w i t h g r i e f i n c r e a s i n g , r e a c h i n g a p l a t e a u and then d e c r e a s i n g as the c o n f l i c t s c o r e went up (see F i g u r e 1 ) . Two o u t l i e r s appeared i n the p l o t ( c i r c l e d ) . The extreme o u t l i e r e x p e r i e n c e d a h i g h i n t e n s i t y of g r i e f and a h i g h degree of c o n f l i c t ( c o n f l i c t = 3 5 , g r i e f = 1 3 3 ) . The o ther o u t l i e r ( c o n f l i c t = 3 5 , gr ie f=63) d i d not e x p e r i e n c e the i n t e n s e g r i e f . F i g u r e 1: S c a t t e r P l o t - C o n f l i c t Versus G r i e f 130; 120. 110. 100. 90. •• 80J a! 70. O 60. 50. 40. 30. 20. 10. © KMT— 10 15 20 25 C o n f l i c t 30 35 A review of the characteristics of the subjects who were located in the lower, outer quadrant revealed that they had experienced previous losses and/or had children already. Three of the subjects had previous pregnancy losses (two had deaths, age not specified; two had miscarriages; three had elective abortions [some subjects experienced a l l or some of the losses]). Kirkley-Best (1981) in her exploratory study on prenatal bereavement found that previous reproductive fai lure was not associated with more intense grief . Benfield, Leib, and Vollman (1978) and Toedtler, Lasker, and Alhadeff (1988) found evidence to support the idea that previous loss was not a key variable In predicting the intensity of grief . Perhaps in the current study, past reproductive failure may have dampened the posttermination grief because the women had experience in dealing with a significant loss and could more easily deal with the present loss. Four of the subjects in the lower, outer quadrant had l ive children, and perhaps this was the variable that lessened the grief even though the confl ict remained high. A common belief is that already having children makes a loss easier to handle, and that "parents know . . . they are capable of childbearing and they have their other chi ld or children to comfort and distract them (Toedter, Lasker, Alhadeff, 1988)." Kirkley-Best (1981), Toedter et a l , and LaRoche et a l (1984) a l l provided evidence to support the idea that previous births were associated with lower grief scores. Summary This chapter began with a description of the study population. There were nine women who aborted for genetic reasons in the sample. The f i r s t question on the degree of confl ict was answered, and the degree of confl ict was found to be high. The amount of confl ict measured in other similar studies was comparable and supportive of the current study's findings. The second question on the intensity of grief was answered, and the grief was found to be high. A comparison of the current study's results with others on perinatal grief indicated that grief was comparable to that experienced after a s t i l l b i r t h and/or neonatal death and greater than that experienced in an early pregnancy loss (miscarriage). A curvilinear relationship was apparent on the scatter diagram when grief was plotted against conf l ic t . Those women who experienced higher confl ict and lower grief had previous losses and/or a child or children. 38 CHAPTER 5 Summary, Recommendations for Nursing Education, Practice, and Research Introduction This chapter concludes the presentation of the study. The chapter begins with a summary of the study and the findings. Recommendations for nursing education and practice follow focussing on counselling as an independent function of nursing and the application of this function in c l i n i c a l practice. F ina l ly , recommendations for nursing research are made. Summary of the Study This descriptive, correlational study was designed to determine the amount of confl ict women experienced prior to aborting for genetic reasons, the amount of grief these women experienced six weeks after the abortion, and i f there was a relationship between the confl ict and grief . The sample consisted of nine women who aborted their genetically defective fetuses in the second trimester. The sample participants were i n i t i a l l y approached by staff members in a medical genetics department of a large urban hospital to obtain their consent to participate. The participants were referred to the department by their family practit ioners. Conflict was identified as the independent variable to study which could affect the dependent variable grief . Conflict was identified in the l i terature as one of the variables complicating the decision-making process prior to the termination of a pregnancy. It was hypothesized that pretermination confl ict 39 would a f fec t the g r i e f experienced by women posttermination. Data were gathered by quest ionnaires . The questionnaires were mailed to consenting subjects s ix weeks posttermination. Data were c o l l e c t e d on c o n f l i c t in the decision-making process preceding the termination r e t r o s p e c t i v e l y and g r i e f experienced s ix weeks posttermination. To answer the three research questions, summary s t a t i s t i c s were used. The answer to the f i r s t question revealed that a high c o n f l i c t l e v e l d id e x i s t . The degree of c o n f l i c t was compared to the degree of c o n f l i c t experienced by women abort ing for personal or s o c i a l reasons and for genetic reasons and found to be comparable. The answer to the second research question revealed that the women experienced a moderate to high i n t e n s i t y of g r i e f s i x weeks posttermination. Comparing th i s amount of g r i e f with other studies revealed that these women grieved more s ix weeks af ter the loss than those who experienced miscarriages; and the women experienced the same amount of g r i e f as those who experienced f e t a l deaths and/or s t i l l b i r t h s . The answer to the t h i r d research question was noted on the scatter diagram when a c u r v i l i n e a r r e l a t i o n s h i p was evident when c o n f l i c t was plotted against g r i e f . Recommendations for Nursing Education and Pract ice As stated e a r l i e r , there is an increase in the number of women presenting for f e t a l diagnosis with a corresponding increase in women terminating pregnancies for genetic reasons. These women do experience c o n f l i c t in the decision-making process and do experience a moderate to high in tens i ty of g r i e f 40 posttermination. The results of this study can direct nursing education and nursing practice. The recommendations for nursing education are in the development of counselling as an independent function of nursing. Students need to know how to accurately assess those in need of counselling. The students could learn to s k i l l f u l l y counsel those who are grieving and recognize those who have experienced a loss and who are at risk of not returning to a balanced state. Students could learn to counsel those who are having d i f f i cu l ty achieving a decision when confl ict exists amongst the alternatives of action. Nursing students could begin by learning basic s k i l l s in communication, then learn the basic s k i l l s of counselling, and then learn the process of decision-making. A nurse should know the basic s k i l l s of counselling and the process of decision-making under confl ict to be able to independently counsel cl ients who are grieving and involved in ethical dilemmas. A prerequisite to counselling cl ients who are electively terminating pregnancies because of fetal anomalies is an understanding of philosophical reasoning. Ethical problems and dilemmas are common in maternal-child nursing because of the advancements in technology. The nurse should have knowledge of ethics and philosophy prior to counselling those clients who are involved in decisions about parents as ultimate decision makers, elective termination of pregnancy, and the rights of fetuses as persons (Archer-Duste, 1988). The recommendations for nursing practice are applying those counselling s k i l l s learned in nursing education in the care of cl ients aborting for genetic reasons. Grief counselling should continue for more than six weeks posttermination unt i l the c l ient achieves a steady psychological, soc ia l , and physical state. When resources are l imited, phone interviews can be done; or i f resources are not l imited, face-to-face interviews can be done (Use & Blackburn Furrh, 1988). Support groups can be formed for this type of c l i ent . Objective counselling prior to the pregnancy termination should be implemented for a l l women, and the counselling should be of a length of time that allows a quality decision to be made. A quality decision is one where a l l steps in the decision-making process have been worked through (Janis & Mann, 1968), and the decison to abort is internally derived rather than externally derived (VanPutte, 1988). Pre- and posttermination programs in the form of individual and group counselling and education need to be expanded to accommodate the increasing numbers of women having prenatal diagnosis and pregnancy termination. The changing demographics of childbearing plus the trend to do maternal serum alpha-fetoprotein screening at 15 to 20 weeks wi l l strain the existing resources of medical genetics centres (Myhre, Richards, & Johnson, 1988). Recommendations for Nursing Research The number of study participants in this study was small; therefore, the significance of the results is questionable and the general izabll i ty l imited. Increasing the number of participants in such a study would provide more information on the nature of the 42 relationship between confl ict and grief . If a curvilinear relationship could be supported with more participants, research could be done on those participants who experienced a lower intensity of grief and a higher degree of conf l ic t . They could be interviewed to determine why the higher degree of confl ict was related to a lower intensity of grief . The characteristics of those who experienced high confl ict and low grief could be examined in greater detai l and with larger numbers to reveal why this phenomenum occurred. Other variables could be examined to determine their effect on the grief experienced posttermination. For example, previous losses such as of children, perinatal losses, and i n f e r t i l i t y could be studied. The inabi l i ty to produce a healthy baby may be considered a loss which intensifies the grief experienced. Also, the difference between f i r s t , second, and third trimester terminations could affect the intensity of grief experienced when one considers the significance of attachment. Silvestre and Fresco (1980) concluded that women did not experience the pregnancy unt i l after prenatal tests confirmed a healthy fetus. Is attachment minimized with women who carry a defective or potentially defective fetus? If attachment is minimized, what other variables(s) intervene to intensify the grief after termination? A longitudinal study could be done to determine the time line for the resolution of grief following a significant pregnancy loss. Grief could be measured at the time of the termination, six weeks posttermination, and then at six months. 43 These results could then be compared to other study populations who experience significant losses. The process of decision-making could be more clearly described. Janis and Mann (1977) described the process of decision-making and the c r i t e r i a for achieving a quality decision. More research on the unique situation of women aborting for genetic reasons may c lar i fy the social and psychological phenomena these women experience and then generate theory relevant to the practice of nursing (Chenitz & Swanson, 1986) . The grief and confl ict questionnaires could be further tested to improve their r e l i a b i l i t y and va l id i ty ; and therefore, promote the r e l i a b i l i t y and va l id i ty of future studies using these measurement too ls . . The discrimination indices were 0.76 and 0.96 for confl ict and grief respectively. Both indices are high, but items were discarded because they had low values when correlated with the overall scores minus the particular Item being examined. Very l i t t l e research has been done on the women, men, and their families who experience a positive prenatal diagnosis. As mentioned, the process, the variables, and the outcomes of the experience need to be studied to provide information to guide health care professionals. Once the knowledge is gained, then nurse educators can prepare students for practice, and nurses can provide appropriate and effective care to this particular population. 44 Summary Women aborting fetuses for genetic reasons do experience confl ict in the decision-making process and do experience a moderate to high intensity of grief . To enhance the nursing care these women receive, nurses should become s k i l l f u l counsellors. As well , health care can be improved for this particular population when more research is done to better understand their experience. References 45 Adams, M. M . , Oakley, G. P. J r . , & Marks, J . S. (1982). Maternal age and b ir ths in the 1980s. Journal of  American Medical Assoc ia t ion , 247, 493-494. Archer-Duste, H. (1988). C l i n i c a l e t h i c s : A mandate for nurs ing . Journal of P e r i n a t a l and Neonatal Nursing, 1(3), 49-56. Aumann, G. (1988). New chances, new choices: Problems with per ina ta l technology. 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New  England Journal of Medicine. 283. 344-349. Kirkley-Best, E . (1981). Grief in response to prenatal loss: An argument for the earl iest maternal attachment. Ann Arbor, MI: Dissertation Information Service. LaRoche, C , Lalinec-Michaud, M. , Engelsmann, F . , Fu l l er , N . , Copp, M . , McQuade-Soldatos, L . , Azima, R. (1984). Grief reactions to perinatal death—A Follow-up study. Canadian  Journal of Psychiatry. 29. 14-19. Lazarus, A. (1985). Psychiatric sequelae of legalized elective f i r s t trimester abortion. Journal of Psychosomatic  Obstetrics and Gynaecology. 4., 141-150. Lewin, K. (1935). A dynamic theory of personality. New York, NY: McGraw-Hill. Lindemann, E . (1944). Symptomatology and management of acute grief . American Journal of Psychiatry. 101., 7-21. Lindemann, E. (1960). Psycho-social factors as stressor agents. In J . M. Tanner (Ed.) , Stress and psychiatric disorder (pp. 13-16). Toronto, ON: Ryerson Press. Lloyd, J . & Laurence, K. M. (1985). Sequelae and support after termination of pregnancy for fetal malformation. Medical  Practice. 290. 907-909. Mansfield, P. K. & Cohn, M. D. (1986). Stress and l a t e r - l i f e childbearing: Important implications for nursing. Maternal-Child Nursing Journal. 15(3), 139-151. 48 M c C a l l , K. (1987). R i t u a l mourning for unresolved g r i e f af ter abor t ion . Southern Medical J o u r n a l . 80.(7), 817-821. M c C a l l , M. (1988). Perceived causal a t t r i b u t i o n s and the i r  r e l a t i o n s h i p to g r i e f i n t e n s i t y in ear ly miscarr iage . Unpublished master's t h e s i s , U n i v e r s i t y of B r i t i s h Columbia, Vancouver, BC. McKusick, V. A. (1983). Mendellan inheritance In man. catalogs of autosomal dominant, autosomal recessive and x - l lnked phenotypes (6th e d . ) . Balt imore, MD: John Hopkins U n i v e r s i t y Press . Myhre, c. M . , Richards, T . , Johnson, J . (1989). Maternal serum a lpha- fe toprote ln screening: An assessment of f e t a l we l l -be ing . Journal of P e r i n a t a l and Neonatal Nursing, 2. (4), 13-20. Parkes, C. M. (1965). Bereavement and mental i l l n e s s part 2: A c l a s s i f i c a t i o n of bereavement reac t ions . B r i t i s h Journal  of Medical Psychology. 38. 13-26. Parkes, C. M. (1986). Bereavement: Studies of g r i e f in. adult l i f e (2nd e d . ) . New York, NY: Tavistock P u b l i c a t i o n s . Payne, E . C , K r a v i t z , A. R . , Notman, M. T. & Anderson, J . V. (1976). Outcome fol lowing therapeutic abor t ion . Archives  of General Psych ia try . 33, 725-733. Peppers, L . G. & Knapp, R. J . (1980a). Maternal react ions to involuntary f e t a l / i n f a n t death. Psych ia try , 43. 155-159. Peppers, L . G. & Knapp, R. J . (1980b). Motherhood and mourning: P e r i n a t a l death. New York, NY: Praeger Publ i shers . Peretz , D. (1970). Development, o b j e c t - r e l a t i o n s h i p s , and l o s s . In B. Schoenberg, A. L . C a r r , D. Peretz , & A. H. Kutscher ( E d s . ) , Loss and g r i e f : Psychological management in medical p r a c t i c e . New York, NY: Columbia Un ivers i ty Press . Rando, T. A. (1988). Gr iev ing : How to go on l i v i n g when  someone you love d i e s . Toronto, ON: Lexington Books. Rayburn, W. & Barr , M. (1985). The malformed fetus: Diagnosis and pregnancy management. Obste tr ics and  Gynecology Annual. 14, 112-126. Rayburn, w. F . & L a F e r l a , J . J . (1982). Second tr imester termination for genetic abnormal i t ies . Journal of  Reproductive Medicine, 27, 584. Robinson, J . Tennes, K. & Robinson, A. (1975). Amniocentesis: Its Impact on mothers and Infants . A 1-year follow-up study. C l i n i c a l Genetics . 8_, 97-106. 49 sel le , H. F . , Holmes, D. w . , & ingbar, M. L . (1979). The growing demand for midtrimester amniocentesis: A systems approach to forecasting the need for f a c i l i t i e s . American Journal of Public Health, 69.(6), 574-580. Si lvestre, D. & Fresco, N. (1980). Reactions to prenatal diagnosis: An analysis of 87 interviews. American  Orthopsychlatrlc Association. Inc . , , 610-617. Sjogren, B. & Uddenberg, N. (1988). Decision making during the prenatal diagnostic procedure. A questionnaire and interview study of 211 women participating in prenatal diagnosis. Prenatal Diagnosis. 8, 263-273. Smith, D. J . (1981). Down syndrome, amniocentesis and abortion: Prevention or elimination. Mental Retardation. 19, 8-11. Theut, S. K . , Pedersen, F. A . , Zaslow, J . J . , Cain, R. L . , Rabinovich, B. A. & Morihisa, J . M. (1989). Perinatal loss and parental bereavement. Amerlean Journal of Psychiatry, 146(5), 635-639. Toedter, L . J . , Lasker, J . N . , & Alhadeff, J . M. (1988). The perinatal grief scale: Development and i n i t a l validation. American Orthopsychlatrlc Association, Inc. , 435-449. VanPutte, A. W. (1988). Perinatal bereavement c r i s i s : Coping with negative outcomes from prenatal diagnosis. Journal  of Perinatal Neonatal Nursing. 2.(2), 12-22. Fart I: Demographic and Health Information 53 Age: Education: 1. grade school completed 2. high school completed 3. post secondary education completed 4. university completed Social: Are you married? single? divorced/separated? Obstetrical history (other pregnancies, not including this one): a. How many times have you been pregnant? b. How many children do you have? Were any adopted out? yes no If yes, how many? Have any of your children died? yes no If yes, how many? Have you had any miscarriages? yes no If yes, how many? Have you had any therapeutic abortions? yes no If yes, how many? c. Do you have a history of difficulty getting pregnant? yes no This pregnancy: a. planned unplanned b. Did you have difficulty getting pregnant this time? yes no. If yes, did you seek medical care or have medical treatment? yes no. c. How many weeks pregnant were you when you found out you were pregnant (either suspected or confirmed)? d. Did you feel your baby move? yes no e. Which of the following test(s) did you have? ultrasound amniocentesis chorionic villi sampling maternal serum alpha fetoprotein (a blood test for spinal cord problems) f. What is your understanding of what was wrong with your baby? g. How many days were there between the day you were told there was something wrong with this baby and the day you ended this pregnancy? h. How far along were you when this pregnancy was ended? Code Number: Part II: Conflict Please consider each of these questions by thinking back to the time when your baby was diagnosed as having a problem, and you were deciding whether to continue or end your pregnancy. Try to relate these questions by circling the number which indicates the best answer. How did you feel when you first suspected you were pregnant? Happy sad 1 2 3 4 5 6-What was your first reaction to the thought of terminating the pregnancy? Relief Distress -2 3- -5 6— Rejected Idea Accepted Idea 1 2 -What do you think about the status of an unborn fetus? An unborn fetus An unborn fetus is not a person is a person .3 4 5 6 7 4. When you were thinking about terminating the pregnancy, how would you say the decision was for you? extremely easy extremely difficult -3 4 5 ~ Circle the number of times you changed your mind about the pregnancy termination. 1 never 3 once or twice 5 many times 7 all the time Code Number: Part III: Grief 55 The following are some words and phrases that describe various kinds of reactions that a person may experience after suffering a loss similar to yours. Try to rate yourself on these reactions by circling the number which most nearly corresponds to the intensity of your feelings as you feel now. 1. SADNESS no sadness moderate 2. 3. 5. 7. 8. very sad 1 2 3 4 5 6 7 -— 8 9 LOSS OF APPETITE no loss moderate severe loss 1 — - 2 3 4 5 6 7--— 8 9 IRRITABILiTY none moderate much 1 2 3 4 5 6 7 -— 8 9 SLEEPING PROBLEMS no problem moderate severe problems 1 — _ 2 — . 3 4 5 6 7-— 8 9 DIFFICULTY CONCENTRATING no difficulty moderate great difficulty 1 2 3 4 5 6 7 -— 8 9 PREOCCUPATION WITH THOUGHTS AND MEMORIES OF YOUR CHILD no thoughts moderate many thoughts 1 2 3 4 5 6 7 -— 8 9 DEPRESSION none moderate severe 1—_2 3 4 5 6 7 -— 8 9 FEAR OF BEING ALONE LN HOUSE no fear moderate great fear 1 — - 2 3 4 5 6 7-— 8 9 ANGER no anger moderate severe anger 1 2 3 4 5 6 7 -— 8 9 GUILT no guilt moderate severe guilt 1 2 — - 3 4 5 - — 6 — - 7 -— 8 9 11. PROBLEMS RETURNING TO USUAL ACTIVITY no problem moderate severe problem -7-—8 9 12. AFRAID OF RESPONSIBILITY OF CAR-ING FOR CHILDREN no fear moderate great fear 1—.2 3 4- -7 8 9 13. FAILURE TO ACCEPT REALITY accepted moderate severe failure failure -2—-3- . 7 - — 8 9 14. TIME CONFUSION no confusion moderate severe confusion 1 — - 2 3 4 5 6 7-—8 9 15. REPETITIVE DREAMS ABOUT BABY no dreams moderate many dreams 1—-2- -7-—8 9 16. EXHAUSTION no exhaustion moderate severe exhaustion . 2 3 4 5 6 7-—8 9 17. LACK OF STRENGTH no lack moderate lack severe lack 1—.2 3 4 5 6 7-—8 9 18. WONDERING ABOUT WHAT WENT WRONG no thoughts moderate many thoughts 1 2 3 4 5 6 7 8 9 Appendix D Consent to be Contacted You have just been told about a research project studying women having a pregnancy termination such as you are having. I you sign this form, I wi l l phone you and inform you of details the project. Signing this form does not mean you have to participate in the study, but gives your consent for me to contact you by phone. Participation does include f i l l i n g out a short, 15-minute questionnaire six weeks after the pregnancy termination. Thank you. Jane Mighton, BN, BSN Name(print): Name(signature): Phone number: 


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