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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 C o n f l i c t to Grief Intensity in a Genetically Indicated Abortion by Jane Diane Mighton B . S . N . , The University of B r i t i s h 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 t h i s thesis as conforming to the required standard  THE UNIVERSITY OF BRITISH COLUMBIA August,  1990  ® Jane Diane Mighton, 1990  In  presenting this  degree  at the  thesis  in  University of  partial  fulfilment  of  of  department  this or  thesis for by  his  or  scholarly purposes may be her  representatives.  permission.  of  ^~77j*sx~~^>n <?  The University of British Columbia Vancouver, Canada  DE-6 (2/88)  for  an advanced  Library shall make  it  agree that permission for extensive  It  publication of this thesis for financial gain shall not  Department  requirements  British Columbia, I agree that the  freely available for reference and study. I further copying  the  is  granted  by the  understood  that  head of copying  my or  be allowed without my written  i i  Abstract The i n c i d e n c e  of c o n g e n i t a l anomalies  c o n g e n i t a l anomalies  of  fetuses  women who have a p o s i t i v e  i s two to three p e r c e n t .  diagnosis  choose to terminate the pregnancy. identifies variables  conflict  anomaly  A review of the  literature  p r e a b o r t i o n and g r i e f  of c o n f l i c t  The purpose of t h i s  Most  of a c o n g e n i t a l  p o s t a b o r t i o n as key  for women t e r m i n a t i n g pregnancies  indications.  intensity  or p o t e n t i a l  for  genetic  study was to study the degree  i n the d e c i s i o n - m a k i n g process  p r e a b o r t i o n and the  of g r i e f s i x weeks p o s t a b o r t i o n and to determine  r e l a t i o n s h i p e x i s t s between the c o n f l i c t T h i s was a d e s c r i p t i v e ,  variables.  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 d a t a . questionnaire  and g r i e f  Women responded to a  s i x weeks p o s t a b o r t i o n about c o n f l i c t  p r e t e r m i n a t i o n and c u r r e n t g r i e f e x p e r i e n c e d .  experienced  The sample  i n c l u d e d nine women who aborted i n the second t r i m e s t e r pregnancy f o l l o w i n g e i t h e r  ultrasound, chorionic v i l l i  or a l p h a - f e t o p r o t e i n a n a l y s i s The f i n d i n g s  high.  A scatter  intensity  of sampling,  fetus.  or not to abort the  weeks p o s t t e r m i n a t i o n the still  of the  i n d i c a t e d that the women experienced  while d e c i d i n g whether  if a  conflict  f e t u s and that at  of g r i e f experienced  six  was  plot 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  p l a t e a u l n g and then d e c r e a s i n g as the  scores rose.  Recommendations were t h a t o b j e c t i v e  conflict  counselling  in  the d e c i s i o n - m a k i n g p e r i o d p r i o r to the t e r m i n a t i o n be p r o v i d e d , and g r i e f c o u n s e l l i n g should continue posttermination  for those who need  longer than s i x weeks  counselling.  iii Table of  Contents Page  Abstract  ii  Table of Contents  iii  L i s t of Figures  v  Acknowledgements CHAPTER ONE  vi Introduction  1  Context of the Problem  1  Significance  2  of the Problem  Conceptual Framework  3  Conflict  3  University of B r i t i s h 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  15  Review of Related Literature  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 a n d 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 o f F i n d i n g s  .. 29  Introduction  29  Study P a r t i c i p a n t s  29  Age, M a r i t a l , a n d E d u c a t i o n a l S t a t u s  29  Past O b s t e t r i c a l H i s t o r y  29  Characteristics  29  of t h i s Pregnancy  Research Question  One  30  Research Question  Two  32  Research Question  Three  35  Summary CHAPTER F I V E Education,  37 Summary, R e c o m m e n d a t i o n s f o r N u r s i n g P r a c t i c e , and Research  38  Introduction  38  Summary o f t h e S t u d y  38  Recommendations  f o r Nursing  Education  and P r a c t i c e  39  Recommendations f o r R e s e a r c h  41  Summary  44  REFERENCES  45  APPENDICES  50  Appendix A  L e t t e r of Information  50  Appendix B  Consent t o P a r t i c i p a t e  51  Appendix C  Questionnaire  52  Appendix D  C o n s e n t t o be C o n t a c t e d  56  L i s t of Figures Figure I Scatter Plot - Conflict Versus Grief  vi  Acknowledgements I would l i k e 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 w i l l i n g and expert assistance with the s t a t i s t i c a l  analysis of the data.  I would also l i k e to thank the genetic associates of the Department of Medical Genetics, Shaughnessy S i t e , Hospital, for r e c r u i t i n g the women for the study.  University In p a r t i c u l a r ,  Caroline Ganshorn was very helpful with t h i s task. And f i n a l l y 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 i n t e l l e c t u a l potential" (Jensen & Bobak, 1985). fulfill  this hope.  However, not a l l couples  It is estimated that the background risk for  any couple to have a c h i l d with major congenital anomalies noted at b i r t h 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 w i l l double in the next decade (Green & Malin, 1988). recorded 3368 genetic disorders to date.  McKusick (1983) has 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 w i 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 w i 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 p o t e n t i a l l y defective detected,  fetus.  or  When a genetic abnormality is  most women decide to abort the fetus (Finley,  Varner, Vinson, & F i n l e y , 1977; Rayburn & LaFerla, 1982).  For  these women, the decision to abort is not made e a s i l y and is an emotional one.  The decision may be d i f f i c u l t due to  c o n f l i c t i n g values such as personal values about abortion and disabled persons.  As well, the p o l i t i c a l and s o c i a l 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). period is tentatively  C o n f l i c t in the preabortion  Identified as a risk factor for g r i e f in  the postabortion period (McCall, 1987; Friedman, Greenspan, Mittleman, 1974; Lazarus, 1985; Payne, K r a v i t z , Notman, & Anderson, 1976).  No research to date i d e n t i f i e s  conflict  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 s e l e c t i v e l y 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 p o t e n t i a l l y defective.  Janis and Mann's  (1968) theory of c o n f l i c t in the decision-making process and the University of B r i t i s h Columbia Model of Nursing (Campbell, 1987) frame the concepts of c o n f l i c t and grief used in this study. Conflict The r e a l i t y of a wanted/unwanted pregnancy can be examined using the idea of decision making under c o n f l i c t .  Early c o n f l i c t  studies by Lewin (1935) conceptualize the " l i f e space" as the t o t a l milieu in which a person behaves; and within this m i l i e u , positive and negative valences motivate a person toward or away from a s p e c i f i c 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 c o n f l i c t 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 d e t a i l in r e l a t i o n 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 a c t i o n . that the fetus is defective  The acknowledgement  or could be defective  constitutes  stage one and involves the beginning of a temporary personal crisis.  The inconsistency between the new information and the  woman's desire to have a healthy baby generates an acute about the pregnancy.  conflict  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 (Janis & Mann, 1968, p. 330).  challenge"  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 r e l i g i o u s convictions, pressure of s o c i a l norms, and/or the opposition of the partner (Bracken, 1974).  Other factors supporting abortion as a viable  a l t e r n a t i v e , such as the lack of s o c i a l and economic support for disabled persons, may outweigh the personal and r e l i g i o u s disapproval of abortion. Stage three involves the evaluation of each alternative course of a c t i o n .  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 a l t e r n a t i v e . Janis and Mann (1968) present a balance sheet schema with each alternative p o s i t i v e l y and negatively evaluated.  Four main  categories are considered in the balance sheet with respect to anticipated favorable or unfavorable consequences given a l t e r n a t i v e .  of choosing a  Anticipated u t i l i t a r i a n gains or losses for  s e l f , anticipated u t i l i t a r i a n gains or losses for s i g n i f i c a n t others, anticipated approval or disapproval from s e l f , and anticipated approval or disapproval from s i g n i f i c a n t others are considered. The c o n f l i c t a woman experiences when she must decide between abortion or continuation of a pregnancy where the fetus is defective  or p o t e n t i a l l y defective  two incompatible response tendencies.  represents the presence of She experiences a high  l e v e l of c o n f l i c t 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 c o n f l i c t 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 a c t u a l l y made a decision (Bracken, 1974; Janis and Mann, 1968).  The woman  may consider what her personal response to a disabled c h i l d would be and the responses of s i g n i f i c a n t others.  If t h i s role does not  feel comfortable, she may imagine what i t would be l i k e 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 it  (Bracken, 1974).  She may inform s i g n i f i c a n t others, such as  family members or friends.  Bolstering of the chosen alternative  continues perhaps by t a l k i n g with those who have aborted for a similar reason or by reading a r t i c l e s on the t o p i c . avoid negative  Usually, to  feedback, she speaks last to those who may be  c r i t i c a l of her chosen a c t i o n .  The purpose of the bolstering is  to increase the spread between the alternatives and to minimize postdecisional regret (the continuation of c o n f l i c t after the action is taken)  (Bracken, 1974).  Bracken suggests that  postdecisional regret is l i k e l y when bolstering of both alternatives,  rather than just one, happens in stage three.  In stage f i v e , there Is adherence to the decision.  The  woman may reach this stage prior to the abortion or in the postpartum period. attitudes or beliefs  Challenging information, such as opposing of society or s i g n i f i c a n t others,  discounted or minimized.  is  Janis and Mann (1968) suggest that  "proselytizing to others about the wisdom of the choice" (p.  331)  a s s i s t s in c o n f l i c t r e s o l u t i o n . Janis and Mann (1977) suggest that the q u a l i t y of the decision may be measured by examining the process used to decide on a chosen course of a c t i o n .  A high q u a l i t y 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 a l t e r n a t i v e s ,  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 p o t e n t i a l l y 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 s i g n i f i c a n t others.  Since the abortion is irrevocable, the only  route for the woman to overcome the regret is to c r y s t a l l i z e 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 s o c i a l commitments (in Stage 4), a l l of which  8  are assumed to influence the long-run s t a b i l i t y of the decision (Stage 5)" (Janis & Mann, 1968, p. 335).  An unstable decision  is  e a s i l y challenged leading the decision maker back into the c o n f l i c t mode.  Unpleasant tension is the r e s u l t .  h a s t i l y in crises situations are more vulnerable to  Decisions made 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 s i t u a t i o n s . Following the abortion, the s t a b i l i t y of the decision or the resolution of the c o n f l i c t is hypothesized in this research to influence the intensity of grief postabortion.  The unpleasant  tension experienced when a c o n f l i c t 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 B r i t i s h Columbia Model for Nursing (Campbell, 1987), which w i l l be described. University of B r i t i s h Columbia Model for Nursing The University of B r i t i s h Columbia Model for Nursing (Campbell, 1987)  (referred to as the Model) views an individual  as a behavioral system made up of nine subsystems: affective,  ego-valuative,  excretory, ingestive,  reparative, r e s p i r a t o r y , and s a t i a t i v e . subsystems  achieving,  protective,  Each of the nine  is responsible for the s a t i s f a c t i o n 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 i e l d theory. significance  Major concepts of  in the Model with relevance to this study are the  9  concepts o£ l i f e space, force, tension, and loss. L i f e 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  t o t a l pattern of factors or influences that affect an i n d i v i d u a l ' 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 s p e c i f i c 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 a b i l i t i e s of the subsystems  (personal); from other behavioural systems  ( s o c i o c u l t u r a l ) ; or from the impersonal aspects of a s i t u a t i o n (impersonal)" (Campbell, 1987, p. 36).  When a woman is deciding  to terminate a pregnancy, forces may arise from her personal beliefs  or morals in r e l a t i o n to abortion or those  related to disabled persons.  beliefs  She may continue the pregnancy with  a defective or p o t e n t i a l l y defective  fetus considering the  influence this would have on the meeting of her personal needs. Other behavioral systems may include s i g n i f i c a n t others such as her husband, family members, or other important persons in her life.  Impersonal forces could be the lack of personal funds to  support a disabled c h i l d 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" p. 37).  (Campbell, 1987,  The tension is experienced in the predecisional period  when the woman anticipates the negative consequences decision.  of the  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 s a t i s f a c t i o n may not occur in the  achieving, s a t i a t i v e ,  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. symbolic losses.  They are physical losses and  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. "fantasies,  Symbolic losses would include a l l  needs, hopes, dreams, and expectations  t h i s child-to-be" (p. 57), which would be l o s t .  placed upon  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 p a r t i c u l a r pregnancy.  G r i e f , which is not included in the Model, is  closely  related to the loss concept and is the group of responses indicative of a s i g n i f i c a n t  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 a n t i c i p a t i o n , of a loss of one or more valued or s i g n i f i c a n t objects"  (p.  96).  Others, Peppers and Knapp (1980b), Kennell, S l y t e r , and Klaus (1970), Parkes (1986), Peretz (1970), Lindemann (1944), and Rando (1984) Include physical and s o c i a l responses to loss as w e l l . Peppers and Knapp's l i s t of grief responses includes emotional, physical, and s o c i a l e f f e c t s .  Emotional or psychological  e f f e c t s , according to Peppers and Knapp, are d e n i a l , g u i l t , resentment,  bitterness,  depression, time confusion, i r r i t a b i l i t y ,  sadness, sense of f a i l u r e , concentration problems, f a i l u r e to accept r e a l i t y , and preoccupation with thoughts and memories of the deceased.  Physical effects are exhaustion,  loss of  sleeping problems, lack of strength, weight loss, blurred v i s i o n , breathlessness, and p a l p i t a t i o n s .  appetite,  headache, The s o c i a l  effects are withdrawal from p a r t i c i p a t i o n in normal a c t i v i t i e s , i s o l a t i o n , 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 t y p i c a l g r i e f reaction in terms of a s p e c i f i c 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 e n t i r e l y .  There are times when the person is  reminded of the loss and may experience a g r i e f reaction past this six-week period (Peppers & Knapp, 1980b; Parkes, 1965). Peppers and Knapp refer to this as "shadow g r i e f , " which does not dominate the person's existance.  Caplan (1974) considers  a loss as a c r 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 s t a t e . can be either an adaptive (healthy) to the c r i s i s .  Caplan states there  or maladaptive  response  "If i t is maladaptive, he emerges with a  greater v u l n e r a b i l i t y to mental disorder, which shows i t s e 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 i r r a t i o n a l i t y " (Caplan, p. 202). Caplan, a s i g n i f i c a n t  In summary, according to  loss i n i t i a t e s a disorganization of usual  functioning which is s e l f - l i m i t e d and gradually leads to a reorganization of  life.  The University of B r i t i s h Columbia Model for Nursing (Campbell, 1987) and Janis and Mann's (1968) theory of  conflict  in decision-making provide the framework for this study. space,  Life  force, tension, and loss are relevant concepts in the  Model, and their roles in t h i s study have been described. Although g r i e f is not a concept in the Model, i t is related to loss and has been reviewed.  closely  Janis and Mann's  13  theory o£ c o n f l i c t 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 t h i s study was to determine i f a relationship exists between the degree of maternal c o n f l i c t experienced in the decision-making process prior to a genetically indicated abortion and the intensity of g r i e f experienced postabortion. Research Questions 1.  What degree of c o n f l i c t do women experience after  the  f e t a l 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 c o n f l i c t  and the intensity of grief? Definition of Terms 1.  Abortion for genetic indications - an induced abortion  because of a defective  or p o t e n t i a l l y defective  (chromosomal anomaly, neural tube defect,  fetus  skeletal or major organ  malformation, teratogen exposure with the potential to affect  the  fetus) 2.  Maternal c o n f l i c t - a s i t u a t i o n where the forces acting  on the person are opposite in d i r e c t i o n and about equal in strength 3.  (Lewin, 1935) Maternal grief - "a highly variable emotional,  14 psychological, p h y s i c a l , and s o c i a l 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.  C o n f l i c t is experienced in the decision-making process  preabortion. 4.  Grief is experienced in the postabortion period. Limitations  1.  The g e n e r a l i z a b l l i t y 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 p a r t i c u l a r population and sample. 2.  The small sample size l i m i t s the g e n e r a l i z a b l l i t y 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 i t e r a t u r e on c o n f l i c t and maternal grief of women aborting for genetic indications.  Chapter three  the research methodology, data c o l l e c t i o n , and analysis. four includes the findings and discussions  describes Chapter  of the findings.  A  summary is presented in chapter five with recommendations for nursing education, p r a c t i c e , and research.  CHAPTER TWO Review of Related Literature Introduction This l i t e r a t u r e review has been organized to outline the two major concepts of this study, which are c o n f l i c t and g r i e f .  The  f i r s t group of studies describes what is known about c o n f l i c t when women decide to abort a fetus for genetic reasons.  The  second group of studies describes the g r i e f of women experiencing an elective abortion for genetic reasons. Conf1let A few studies have been done to study c o n f l i c t 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 c h i l d and moral b e l i e f s about abortion and disabled persons. of bearing a defective  The women considered the burden  c h i l d and the burden on society as w e l l .  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 r i s k s associated advanced maternal on the development of the c h i l d .  with  The women  perceived having a Down's syndrome c h i l d as being a burden on their personal l i v e s and a burden on society. finances were also considered.  Their personal  Thirty-one percent were concerned  about the affected c h i l d ' s well-being.  F i f t y - t h r e e 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 b e l i e f s and a desire for a c h i l d . few, f e t a l movement made the decision d i f f i c u l t .  For a  A large number  had a r e l i g i o u s 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 . F i n l e y , 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. diagnoses.  Ten women had positive prenatal  The researchers found that one of the major concerns  of women prior to amniocentesis was the p o s s i b i l i t y of having to make a decision about abortion.  Forty-nine percent were  concerned about having to make this d e c i s i o n .  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 p o s i t i v e ; 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. but only 22 d i d . questions.  Thirty-three women were asked to p a r t i c i p a t e , The subjects were interviewed with open-ended  Generally, the researchers concluded that none of the  women took the abortion issue l i g h t l y .  On a personal l e v e l ,  the  women considered the burden of having a defective c h i l d on their l i v e s , marriages, and f a m i l i e s .  They considered their own and  17 the f a m i l y ' s a b i l i t y to cope with a d e f e c t i v e social,  child,  and the  f i n a n c i a l , and p h y s i c a l s t r e s s e s of having a d i s a b l e d  c h i l d i n the f a m i l y .  From a s o c i e t a l  perspective,  some women  were i n f l u e n c e d by an "unwillingness knowingly to b r i n g a defective  child  i n t o the world" (Robinson et a l , p .  A t t i t u d e s towards a repeat amniocentesis  were f a v o r a b l e .  would repeat and three recommended amniocentesis friends.  103).  A weakness of the s t u d y , which the  Twenty  to t h e i r  researchers  acknowledged, was the unknown responses of the nine who d i d not participate. F u r l o n g and Black  (1984) explored the experiences  and coping  s t r a t e g i e s of f a m i l i e s of women who terminated a pregnancy f o l l o w i n g d e t e c t i o n of a s e r i o u s d e f e c t  i n the f e t u s .  The focus  of the study was on the f a m i l y , p a r t i c u l a r l y s i b l i n g s ,  but data  uncovered i s s u e s experienced by the parents r e l a t e d to d e c i s i o n making.  The r e s e a r c h e r s conducted s e m i - s t r u c t u r e d i n t e r v i e w s on  a s m a l l convenience sample of 15 f a m i l i e s . questioned, episode  For the  parents  the a b o r t i o n represented a p a i n f u l and s e r i o u s  in their lives.  A l l couples r e p o r t e d t h a t there was  agreement on the d e c i s i o n to a b o r t , but between mothers and f a t h e r s there was a d i f f e r e n c e decision-making experience.  on r a t i n g the d i f f i c u l t y of  Nine of the f i f t e e n  mothers r e p o r t e d  t h a t the d e c i s i o n was d i f f i c u l t , and one r e p o r t e d i t was at somewhat d i f f i c u l t . difficult,  Two of the s i x  fathers  felt  the  least  the d e c i s i o n was  and four s a i d i t had not been d i f f i c u l t .  Comments  suggested that dilemmas experienced by the parents stemmed from p e r s o n a l dilemmas r a t h e r than u n c e r t a i n t y and c o n f u s i o n about the  18  f e t a l diagnoses or prognoses. Fletcher (1972) Interviewed 25 couples to determine the e t h i c a l issues parents experienced when they have prenatal diagnosis and genetic counselling. human c o n f l i c t which existed.  He described two sources of  They were: f i r s t , the inner  c o n f l i c t within the person and second, the c o n f l i c t between s e l f and community.  The f i r s t source of c o n f l i c t would arise amongst  the inner l o y a l t i e s to s e l f ,  family, and the unborn c h i l d ; the  second source of c o n f l i c t would arise between the person and the s i g n i f i c a n t community (for example, the church).  Moral suffering  ensued when the parents wanted a c h i l d desperately, defective c h i l d .  but not a  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 c h i l d " (p.  479).  Grief A v a r i e t y of responses to the loss of a defective or p o t e n t i a l l y defective literature.  fetus have been documented in the  Some responses included depression,  d i s r u p t i o n , g u i l t , and acute g r i e f .  social  These responses were but a  few of the c h a r a c t e r i s t i c s of the c l a s s i c g r i e f 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 s o c i a l 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 s o c i a l disruption" (p. 622). not seem to be consistent  However, t h i s stated conclusion did  with the data.  When interviewed, seven  patients reported a good emotional recovery; three considered the recovery f a i r ; and two continued to be troubled by "a disturbing and d i s t r e s s i n g reaction" (p. 622). interview an emotional s t r a i n .  A l l subjects  found the  Although the study was anecdotal,  i t did support the notion that psychological sequelae,  either  minimal or severe, did e x i s t . 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 c o l l e c t 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 h i s t o r i e s , M . M . P . I . s , and interviews  were analyzed resulting in preliminary findings suggesting was a high incidence of psychological trauma.  Depression,  there  20  g u i 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 f e t a l 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, therapeutic abortion, and sequelae.  amniocentesis,  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 p a r t i c i p a t e , 4 relocated, 9 declined, and 9 were unavailable for follow-up. remained in the study.  Only 2 women plus 12 couples  The differences  between the sample and  the d e c l i n e r s , relocaters, and those unavailable for follow-up were unknown. couples who . . .  The researchers suggested "the p o s s i b i l i t y that [agreed] to participate may have fewer  conflicts  and less emotional trauma in their l i v e s than those who declined  21  participation" (p.  255). Summary  The l i t e r a t u r e review has explored what is known about c o n f l i c t and grief as experienced by women aborting for genetic indications.  Several studies researched c o n f l i c t for those who  have prenatal diagnosis and those who terminate pregnancies genetic reasons.  for  A l l studies supported the idea that grief  postabortion for genetic indications did e x i s t .  Further research  is needed to learn about c o n f l i c t preabortion and grief postabortion and the relationship between the two concepts.  22  CHAPTER THREE Methodology Introduction This 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 was designed to describe the relationship between c o n f l i c t and g r i e f .  The  research questions guiding the study methodology included: 1) What degree of c o n f l i c t do women experience after the  fetal  diagnosis is made and prior to the decision to abort?  2) What  i n t e n s i t y of g r i e f do women experience following an abortion for genetic indications? and 3) What is 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 intensity of grief?  This chapter w i l l  discuss the process for obtaining study p a r t i c i p a n t s , the Instruments, and the methods of data a n a l y s i s .  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 f e t a l anomaly or the potential to have a f e t a l anomaly. be of any gestational age.  The woman's pregnancy could  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 h o s p i t a l .  A  s t a f f person i d e n t i f i e d suitable candidates who met the sample c r i t e r i a .  The Information l e t t e r  (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 i t s e n t i r e t y then. At f i r s t , there were few respondents and i t was f e l t that at i n i t i a l contact the woman might have been too distraught to sign the consent to p a r t i c i p a t e .  So, potential respondents were asked  to sign a consent to be contacted (Appendix D).  This appeared to  be acceptable to both the s t a f f 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 o b s t e t r i c a l history; the second part collected data on c o n f l i c t ; the t h i r d part collected data on g r i e f  Intensity.  To measure c o n f l i c t , a scale designed by Bracken (1974) was used.  This scale was designed to determine i f c o n f l i c t was an  intra-psychic process delaying women's decision to abort for personal reasons.  The o r i g i n a l study population included 328  women, both blacks and whites,  presenting themselves to private  abortion c l i n i c s in New York and New Haven.  The results of  Bracken's study concluded that those women with increased c o n f l i c t 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 c o n f l i c t scale with the overall c o n f l i c t score.  The correlations ranged from .52 to  (happy-sad, .52; times changed mind about the abortion, killing-not k i l l i n g ,  .52; accept-reject,  .78; ease of abortion decision,  .79).  .67;  .79  .62;  relief-distress,  Comparing the  questions  with personal observations and anecdotal and research-based l i t e r a t u r e , the questions had content v a l i d i t y . Bracken (1974) used a seven-point semantic d i f f e r e n t i a l technique to measure the degree of c o n f l i c t .  The c o n f l i c t score  was the mean score of the response to six items (Appendix C) and ranged from a low c o n f l i c t score of 1.0 to a high of 7.0.  Women  were considered to be In a high state of c o n f l i c t 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, f e l t  that  they were k i l l i n g their c h i l d , had d i f f i c u l t y 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 c h i l d was changed.  The changed wording reflected the intent of the  o r i g i n a l question, but released the question of the criminal Intent of " k i l l i n g " 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 c o n f l i c t were made. To measure internal consistency of the c o n f l i c t scale in the current study, each item's score was intercorrelated with the  overall c o n f l i c t score excluding the item being tested. correlations ranged from 0.112 relief-distress,  The  to 0.698 (happy-sad, 0.419;  0.112; accept-reject,  0.662; person-not a  person, 0.505; ease of abortion decision, mind about the abortion, 0.698).  0.674; times changed  The second question on the  f i r s t reaction to the thought of terminating the pregnancy being either r e l i e f or d i s t r e s s was discarded in determining the overall discrimination index because of i t s  low value.  The Hoyt  estimate of r e l i a b i l i t y was f i n a l l y 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 g r i e f ,  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, S l y t e r , 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,  i n a b i l i t y to sleep,  I r r i t a b i l i t y , preoccupation, and i n a b i l i t y to return to normal activity.  After reviewing the l i t e r a t u r e on grieving, Peppers  and Knapp expanded the questionnaire to include other emotional,  psychological, p h y s i c a l , and s o c i a l responses. directed the subjects to rate themselves  The scale  on a scale from 1 (no  problem) to 9 (extreme d i f f i c u l t y ) on each variable y i e l d i n g scores ranging from 18-162. grief  The women were asked to rate their  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 v a l i d i t y 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 i t e r a t u r e on the t o p i c , the questions had content v a l i d i t y . 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 i n a l l y determined to be 0.96. Three of the eighteen items in the questionnaire had low or negative discrimination indices when compared with the overall g r i e f score excluding the items anlyzed; therefore, these scores were discarded. thirteen.  The items discarded were eight, twelve, and  The remaining discrimination indices were as follows:  the sadness item was 0.683; loss of appetite, irritability,  0.896;  0.766; sleeping problems, 0.914; d i f f i c u l t y  concentrating, 0.834; preoccupation with thoughts and memories of  27  your c h i l d , 0.703; depression,  0.857; anger, 0.806; g u i l t ,  0.821;  problems returning to usual a c t i v i t y , 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 o b s t e t r i c a l history gathered from the questionnaire was used to describe the  sample's  characteristics. Research questions 1 and 2.  The c o n f l i c t and g r i e f  intensity scale from each participant was calculated and examined for frequency d i s t r i b u t i o n , and measures of central tendency and variability. Research question 3.  Since the sample was small and  d i s t r i b u t i o n free, the relationship between c o n f l i c t and grief was analyzed by p l o t t i n g grief against c o n f l i c t on a scatter plot.  The scatter plot provided an informative picture of the  bivariate numerical data ( c o n f l i c t 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. C o n f i d e n t i a l i t y was maintained. a code were l i s t e d .  Each p a r t i c i p a n t ' s name and  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 w i 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 c o l l e c t i o n . The l e t t e r 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 p r i n c i p l e 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 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 involved two data c o l l e c t i o n instruments.  Each tool added  information to the data base which was then analyzed according to established s t a t i s t i c a l methods. also discussed.  E t h i c a l and human rights were  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 c h a r a c t e r i s t i c s of the study p a r t i c i p a n t s . 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, M a r i t a l , and Educational Status The sample consisted of nine women whose average age was 33.4.  The ages ranged from 25 to 42 years.  years.  The median was 35  Eight of the subjects were married with one in a  common-law r e l a t i o n s h i p .  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 c h i l d die.  Whether or not t h i s was a prenatal death was not  determined.  Three women (33%) had experienced several previous  losses (miscarriage, death, and/or elective abortion). (55%) had children l i v i n g at home with them.  Five  One woman (11%) had  a history of d i f f i c u l t y getting pregnant in previous pregnancies. Characteristics of This Pregnancy Eight of the nine pregnancies were planned (88%).  All  30  respondents denied any d i f f i c u l t y achieving pregnancy this time. Four out of nine (44%) had f e l t  f e t a l 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 c o n f l i c t do women  experience after the f e t a l diagnosis is made and prior to the abortion? To determine the degree of c o n f l i c t experienced in the decision-making process prior to the pregnancy termination, a c o n f l i c t scale developed by Bracken (1974) was used.  The  subjects were sent the questionnaires six weeks posttermination and asked to judge their c o n f l i c t r e t r o s p e c t i v e l y .  The c o n f l i c t  score for the current study was 23.88 with a standard deviation of 8.04. 35.00.  The lowest score was 14.00 and the highest score was The lowest score obtainable was 5, and the highest was  31  35. Comparing the current study results to Bracken's (1974) study r e s u l t s ,  the c o n f l i c t scores were s i m i l a r .  Bracken's study  population included women aborting for personal reasons. Bracken's average c o n f l i c t score was 25.0, which he considered to be high.  Bracken's results indicated there was a greater  level  of c o n f l i c t associated with second trimester abortions with a decline in c o n f l i c t 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 c o n f l i c t 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 u n t i l they had reviewed the test r e s u l t s .  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 f e l t  free to undergo  prenatal diagnosis, they considered i t d i f f i c u l t to r e f r a i n 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 r e s p o n s i b i l i t y of  caring for a disabled c h i l d .  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 e t h i c a l and moral issues surrounding pregnancy terminations for genetic reasons affect  the c o n f l i c t  experienced.  The e t h i c a l issues of selective abortion discriminating against the disabled (Smith, 1981; Sjogren & uddenberg, 1988) and v i o l a t i n g f e t a l rights (Dyck, 1971; Aumann, 1988) might have been difficult  to handle in the decision-making process.  Moral and  e t h i c a l issues may be clouded when the woman's r e l i g i o u s  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 s i t u a t i o n 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 c o n f l i c t score was above the average and her grief score was average. Research Question Two: experience  what intensity of grief do women  following an abortion for genetic reasons?  To determine the intensity of maternal grief posttermination, the g r i e f 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 that time.  to determine their g r i e f Intensity at  Descriptive s t a t i s t i c s were used to analyze the data.  The average number of g r i e f 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 g r i e f 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.  later the scores were s i g n i f i c a n t l y different 32.6,  standard deviation 12.4).  Four to six weeks (median 28, average  The g r i e f 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  was 18.3 weeks when the pregnancy was terminated. Lasker, and Alhadeff  age  Toedter,  (1988) did a longitudinal study to determine  the factors affecting g r i e f resolution following spontaneous abortion, f e t a l or neonatal death, or ectopic pregnancy and determined that the greater the gestational age the more g r i e f  34  experienced.  Kirkley-Best (1981) studied prenatal bereavement  and Theut et al (1989) studied perinatal bereavement in women who had experienced miscarriages, s t i l l b i r t h s , 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, s t i l l b i r t h s , 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 f i r s t planned pregnancy.  Silvestre and Fresco (1980) studied the  reactions of older women to prenatal diagnosis.  More than half  were expecting their f i r s t child and expressed how precious the child was considering their advancement towards i n f e r t i l i t y . 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 i n f e r t i l i t y related to increasing age or the dysfunctional stress felt by older women  influenced  the  grief  t h e s e women e x p e r i e n c e d  i n the  current  study. Question Three: of  conflict  and t h e  The g r i e f scatter  decreasing outliers  with  as  the  appeared  experienced conflict  a high  1:  grief  of  i n the  degree  grief?  plot  increasing,  conflict  between t h e  s c o r e s were p a i r e d and p l o t t e d  The s c a t t e r  score  plot  intensity  grief=63)  Scatter  relationship  intensity  (conflict=35,  (conflict=35,  the  and c o n f l i c t  diagram.  relationship  Figure  What i s  showed a c u r v i l i n e a r reaching a plateau  went up  (see  (circled). of  grief  grief=133). d i d not  on a  and  Figure 1).  The e x t r e m e  experience  P l o t - C o n f l i c t Versus  the  Two  outlier  and a h i g h d e g r e e  The o t h e r  then  of  outlier intense  grief.  Grief  130; 120. 110. 100. 90. ••• 80J a! 70.  ©  O 60. 50. 40. 30. 20. 10. KMT—  10  15  20  25  Conflict  30  35  A review of the c h a r a c t e r i s t i c s 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 s p e c i f i e d ;  two had miscarriages; three had elective  abortions [some subjects experienced a l l or some of the l o s s e s ] ) . Kirkley-Best (1981) in her exploratory study on prenatal bereavement found that previous reproductive f a i l u r e was not associated with more intense g r i e f .  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 g r i e f .  Perhaps in the current study,  past reproductive f a i l u r e may have dampened the posttermination g r i e f because the women had experience significant  in dealing with a  loss and could more e a s i l y deal with the present  loss. Four of the subjects in the lower, outer quadrant had l i v e c h i l d r e n , and perhaps this was the variable that lessened the g r i e f even though the c o n f l i c t remained high. belief  A common  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 c h i l d or children to comfort and d i s t r a c t 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  c o n f l i c t was answered, and the degree of c o n f l i c t was found to be high.  The amount of c o n f l i c t 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 g r i e f indicated that g r i e f 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 c u r v i l i n e a r relationship  was apparent on the scatter diagram when grief was plotted against c o n f l i c t .  Those women who experienced higher c o n f l i c t  and lower g r i e f had previous losses and/or a c h i l d or c h i l d r e n .  38  CHAPTER 5 Summary, Recommendations for Nursing Education, P r a c t i c e , and Research Introduction This chapter concludes the presentation of the study. chapter begins with a summary of the study and the  findings.  Recommendations for nursing education and practice  follow  The  focussing on counselling as an independent function of nursing and the application of t h i s function in c l i n i c a l p r a c t i c e . F i n a l l y , recommendations for nursing research are made. Summary of the Study This 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 was designed  to  determine the amount of c o n f l i c t women experienced prior to aborting for genetic reasons,  the amount of g r i e f these women  experienced six weeks after the abortion, and i f there was a r e l a t i o n s h i p between the c o n f l i c t and g r i e f .  The sample  consisted of nine women who aborted their genetically fetuses in the second trimester.  defective  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 p r a c t i t i o n e r s . Conflict was i d e n t i f i e d as the independent variable to study which could affect  the dependent variable g r i e f .  Conflict was  i d e n t i f i e d in the l i t e r a t u r e as one of the variables complicating the decision-making process prior to the termination of a pregnancy.  It was hypothesized that pretermination c o n f l i c t  39 would a f f e c t  the g r i e f experienced by women p o s t t e r m i n a t i o n .  Data were gathered by q u e s t i o n n a i r e s . were mailed to consenting s u b j e c t s Data were c o l l e c t e d  on c o n f l i c t  The q u e s t i o n n a i r e s  s i x weeks p o s t t e r m i n a t i o n .  i n the d e c i s i o n - m a k i n g process  preceding the t e r m i n a t i o n r e t r o s p e c t i v e l y and g r i e f  experienced  s i x weeks p o s t t e r m i n a t i o n . To answer the three r e s e a r c h q u e s t i o n s , were used. conflict  The answer to the  level did exist.  the degree  summary s t a t i s t i c s  f i r s t q u e s t i o n r e v e a l e d t h a t a high  The degree  of c o n f l i c t was compared to  of c o n f l i c t experienced by women a b o r t i n g for p e r s o n a l  or s o c i a l reasons and for g e n e t i c reasons and found to be comparable.  The answer to the second r e s e a r c h q u e s t i o n  revealed  t h a t 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 p o s t t e r m i n a t i o n .  Comparing t h i s amount of g r i e f  with  other s t u d i e s r e v e a l e d t h a t these women g r i e v e d more s i x weeks after  the  l o s s than those who experienced m i s c a r r i a g e s ; 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  t h i r d r e s e a r c h q u e s t i o n was noted on the s c a t t e r  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 against  the  plotted  grief.  Recommendations for 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 As s t a t e d  e a r l i e r , there  i s an i n c r e a s e  women p r e s e n t i n g f o r f e t a l d i a g n o s i s increase  with a c o r r e s p o n d i n g  i n women t e r m i n a t i n g pregnancies  These women do experience and do experience  conflict  i n the number of  for genetic  reasons.  i n the d e c i s i o n - m a k i n g  a moderate to high i n t e n s i t y of g r i e f  process  40  posttermination.  The results of this study can d i r e c t nursing  education and nursing p r a c t i c e . 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 r i s k of not returning to a balanced s t a t e . Students could learn to counsel those who are having d i f f i c u l t y achieving a decision when c o n f l i c t exists amongst the alternatives  of a c t i o n .  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. nurse should know the basic s k i l l s of counselling and the of decision-making under c o n f l i c t to be able to  A  process  independently  counsel c l i e n t s who are grieving and involved in e t h i c a l dilemmas. A prerequisite to counselling c l i e n t s who are  electively  terminating pregnancies because of f e t a l anomalies is an understanding of philosophical reasoning.  E t h i c a l 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 c l i e n t s who are involved in decisions about parents as ultimate decision makers, e l e c t i v e 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 c l i e n t s aborting for genetic reasons.  Grief counselling should  continue for more than six weeks posttermination u n t i l the  client  achieves a steady psychological, s o c i a l , and physical state. When resources are l i m i t e d , phone interviews can be done; or i f resources are not l i m i t e d , face-to-face interviews can be done ( U s e & Blackburn Furrh, 1988). t h i s type of c l i e n t .  Support groups can be formed for  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 q u a l i t y decision to be made.  A q u a l i t y 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 i n t e r n a l l y 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 w i l l s t r a i n 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  generalizabllity limited.  of the results  is questionable and the  Increasing the number of participants  in such a study would provide more information on the nature of the  42 relationship between c o n f l i c t and g r i e f .  If a c u r v i l i n e a r  relationship could be supported with more p a r t i c i p a n t s , research could be done on those participants who experienced a lower intensity of g r i e f and a higher degree of c o n f l i c t .  They could be  interviewed to determine why the higher degree of c o n f l i c t was related to a lower intensity of g r i e f .  The c h a r a c t e r i s t i c s of  those who experienced high c o n f l i c t and low g r i e f could be examined in greater d e t a i l and with larger numbers to reveal why this phenomenum occurred. Other variables could be examined to determine their on the g r i e f experienced posttermination.  For example,  effect  previous  losses such as of c h i l d r e n , perinatal losses, and i n f e r t i l i t y could be studied.  The i n a b i l i t y to produce a healthy baby may be  considered a loss which intensifies  the g r i e f experienced.  Also,  the difference between f i r s t , second, and t h i r d trimester terminations could affect  the intensity of g r i e f experienced when  one considers the significance  of attachment.  Silvestre and Fresco (1980) concluded that women did not experience the pregnancy u n t i l after prenatal tests confirmed a healthy fetus. defective  Is attachment minimized with women who carry a  or p o t e n t i a l l y defective  minimized, what other variables(s)  fetus?  If attachment  intervene to intensify  is the  g r i e f after termination? A longitudinal study could be done to determine the time line for the resolution of grief following a s i g n i f i c a n t pregnancy l o s s .  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 s i g n i f i c a n t  losses.  The process of decision-making could be more c l e a r l y described.  Janis and Mann (1977) described the process of  decision-making and the c r i t e r i a for achieving a q u a l i t y decision.  More research on the unique s i t u a t i o n of women  aborting for genetic reasons may c l a r i f y the s o c i a l and psychological phenomena these women experience and then generate theory relevant to the practice of nursing (Chenitz & Swanson, 1986) . The g r i e f and c o n f l i c t questionnaires could be further tested to improve their r e l i a b i l i t y and v a l i d i t y ; and therefore, promote the r e l i a b i l i t y and v a l i d i t y of future studies using these measurement t o o l s . .  The discrimination indices were 0.76  and 0.96 for c o n f l i c t and g r i e f respectively.  Both indices are  high, but items were discarded because they had low values when correlated with the overall scores minus the p a r t i c u l a r 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. mentioned, the process,  As  the v a r i a b l e s , 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 p r a c t i c e , and nurses can provide appropriate and effective care to this p a r t i c u l a r population.  44  Summary Women aborting fetuses for genetic reasons do experience c o n f l i c t in the decision-making process and do experience a moderate to high intensity of g r i e f .  To enhance the nursing care  these women receive, nurses should become s k i l l f u l counsellors. As w e l l , health care can be improved for t h i s particular population when more research is done to better understand their experience.  45  References Adams, M. M . , Oakley, G. P . J r . , & Marks, J . S. (1982). Maternal age and b i r t h s i n the 1980s. J o u r n a l of American Medical A s s o c i a t i o n , 247, 493-494. A r c h e r - D u s t e , H. (1988). C l i n i c a l e t h i c s : A mandate for nursing. J o u r n a l of P e r i n a t a l and Neonatal N u r s i n g , 1 ( 3 ) , 49-56.  Aumann, G. (1988). 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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. S i l v e s t r e , D. & Fresco, N. (1980). Reactions to prenatal diagnosis: An analysis of 87 interviews. American Orthopsychlatrlc Association. I n c . , , 610-617. Sjogren, B. prenatal study of Prenatal  & Uddenberg, N. (1988). Decision making during the diagnostic procedure. A questionnaire and interview 211 women p a r t i c i p a t i n g in prenatal diagnosis. 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 g r i e f scale: Development and i n i t a l v a l i d a t i o n . American Orthopsychlatrlc Association, I n c . , 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.  53  Fart I: Demographic and Health Information 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. H o w many times have you been pregnant? b. H o w 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. D i d you have difficulty getting pregnant this time? yes no. If yes, did you seek medical care or have medical treatment? yes no. c. H o w many weeks pregnant were you when you found out you were pregnant (either suspected or confirmed)? d. D i d 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.  H o w 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 1  sad 2  3  4  5  6-  What was your first reaction to the thought of terminating the pregnancy? Relief  Distress -2  -5  3-  6— Accepted Idea  Rejected Idea 1  2-  What do you think about the status of an unborn fetus? An unborn fetus is not a person .3  4.  An unborn fetus is a person 4  5  6  7  When you were thinking about terminating the pregnancy, how would you say the decision was for you? extremely difficult  extremely easy -3  4  5~  Circle the number of times you changed your mind about the pregnancy termination. 1 3 5 7  never once or twice many times 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 1  2.  2  moderate 4  5  6  3  4  5  6  7--— 8  2  3  4  5  SLEEPING PROBLEMS no problem moderate 1—_2—.3  4  5  6  7 -— 8  7-— 8  2  3  4  5  6  7 -— 8  7.  2  4  5  6  7 -— 8  DEPRESSION none moderate 1—_2  8.  3  3  4  5  6  7 -— 8  14.  9  15.  3  ANGER no anger  4  5  6  7- — 8  moderate  9  severe anger  16.  2  3  GUILT no guilt 1  2—-3  4  5  6  7 -— 8  moderate 4  5 - — 6 — - 7 -— 8  9  severe guilt 9  3  4  5  6  9  severe confusion 7-—8  -7-—8  EXHAUSTION no exhaustion moderate  9  3  4  5  6  3  4  5  6  9  severe exhaustion 7-—8  LACK OF STRENGTH no lack moderate lack 1—.2  18.  9  REPETITIVE DREAMS ABOUT BABY no dreams moderate many dreams  .2  17.  8  .7-—8  TIME CONFUSION no confusion moderate  9 severe lack  7-—8  9  WONDERING ABOUT WHAT WENT WRONG no thoughts moderate many thoughts 1  1  -7  1—-2-  FEAR OF BEING ALONE LN HOUSE no fear moderate great fear 1—-2  4-  FAILURE TO ACCEPT REALITY accepted moderate severe failure failure  1—-2  9  severe  3  -2—-3-  9  PREOCCUPATION WITH THOUGHTS AND MEMORIES OF YOUR CHILD no thoughts moderate many thoughts 1  13.  9  AFRAID OF RESPONSIBILITY OF CARING FOR CHILDREN no fear moderate great fear 1—.2  9  DIFFICULTY CONCENTRATING no difficulty moderate great difficulty 1  12.  9  severe problems  PROBLEMS RETURNING TO USUAL ACTIVITY no problem moderate severe problem -7-—8  9  much  6  11.  9  severe loss  IRRITABILiTY none moderate 1  5.  7 -— 8  LOSS OF APPETITE no loss moderate 1—-2  3.  3  very sad  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 w i l l phone you and inform you of d e t a i l s the project.  Signing t h i s form does not mean you have to  participate in the study, but gives your consent for me to contact you by phone.  P a r t i c i p a t i o n 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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