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AMBIGUITY OF LOSS, ANTICIPATORY GRIEF, AND BOUNDARY
AMBIGUITY IN CAREGIVER SPOUSES AND PARENTS
Presented to the Graduate Council of the
University of North Texas in Partial
Fulfillment of the Requirements
For the Degree of
DOCTOR OF PHILOSOPHY
Jan K. Rider, B.F.A., M.S.
Denton, Texas August, 1993 yva/j M0e 3mg
AMBIGUITY OF LOSS, ANTICIPATORY GRIEF, AND BOUNDARY
AMBIGUITY IN CAREGIVER SPOUSES AND PARENTS
DISSERTATIONPresented to the Graduate Council of the University of North Texas in Partial Fulfillment of the Requirements For the Degree of
DOCTOR OF PHILOSOPHYby Jan K. Rider, B.F.A., M.S.
Denton, Texas August, 1993 Rider, Jan Kathleen, Ambiguity of Loss. Anticipatory Grief, and Boundary Ambiguity in Caregiver Spouses and Parents. Doctor of Philosophy (Counseling Psychology), August, 1993, 288 pp., 15 tables, references, 155 titles.
The purpose of the present cross-sectional study was to examine the effects of ambiguity of loss and type of caregiver-to-patient relationship on anticipatory grief, negative physical and psychological outcomes associated with grief, and boundary ambiguity in family caregivers of chronically ill patients. Questionnaires were completed by 23 parents of ill children and 30 spouses of ill mates.
Using an original and a revised concept for level of ambiguity, partial support was found for the prediction that parents and spouses in high ambiguity of loss circumstances would report more anticipatory grief than those in low ambiguity ones. Contrary to prediction, a slight but nonsignificant trend occurred for parents and spouses in low ambiguity situations to report more negative physical and psychological effects associated with grief as well. Level of ambiguity was not found to impact boundary ambiguity as had been hypothesized. Spouses reported more boundary ambiguity than parents, regardless of level of ambiguity of the loss. Contrary to prediction that parents would report less anticipatory grief and more negative physical and psychological outcomes than spouses, generally, no significant differences were found between the two groups.
However, using theoriginal concept of ambiguity, parents did tend to recall more past grief than spouses.
The study highlighted several methodological concerns which impact research on loss and grief, particularly the difficulty involved in recruiting participants with subsequent occurrence of sampling bias, rudimentary status of available measurement tools, and a host of potentially confounding personal and sociodemographic variables.
The present study supports a view of the loss which occurs in families dealing with chronic illness as a complex process whose impact on grief, distress, and family upheaval is influenced by multiple factors. Such factors include both the ambiguity of the loss and the type of family relationship involved. Complex research of a longitudinal nature using psychosocial models of illness is needed to
To my parents, Jack and Jerry Rider, whose belief in education taught me how to explore.
To my mother, whose gentleness, nurturance, and absolute support taught me how to care.
To my father, whose bravery throughout childhood illness, drive, and grit in facing life's realities for his family taught me how to be strong.
To my husband, Tom Wilhite, whose total commitment, acceptance, and wry humor in our marriage taught me mature love.
To my dissertation director, Dr. Bert Hayslip, Jr., whose encouragement and patient guidance taught me how to do research.
And, to Trey Ganyard and his family who taught me how the face of courage shines even in tragedy. This dissertation is dedicated to Trey.
14. Regression Analysis of Dependent Measure Scores (Original Concept for Level of Ambiguity) 130
15. Regression Analysis of Dependent Measure Scores (Revised Concept for Level of Ambiguity) 131
Grief over a loved one's serious chronic illness is an issue for increasing numbers of Americans. Successes in medical technology, while resulting in decreased mortality from acute diseases and in increased life expectancy, have also contributed to an unprecedented growth in chronic illnesses (Lubkin, 1986). A general definition of chronic illness is "a condition that interferes with daily functioning for more than 3 months a year, causes hospitalization of more than 1 month a year, or (at time of diagnosis) is likely to do either of these" (Perrin, 1985, p. 2). Serious chronic illnesses having a life-threatening or terminal component involve the additional issue of potential or certain death with permanent loss of a relationship (Rolland, 1991). When such illnesses occur in a spouse or child, they are apt to be particularly difficult, given the assumed closeness of marital and parent-child relationships.
While grief following the death of a spouse or child has been extensively studied (Osterweis, Solomon, & Green, 1984), considerably less research has dealt with the predeath grief process in spouses or parents of seriously ill patients (Rolland, 1991). The research which does exist in this area of what is often labeled anticipatory grief (Lindemann, 1944) tends to focus on grief during the relatively unambiguous terminal phase of the loved one's illness, when loss is both imminent and certain. In contrast, grief responses of family during the more ambiguously life-threatening chronic or long haul phase of an illness have received very little attention. As Rolland (1991) states, "Overlooked are the enormous challenges to families living with uncertainty in the face of tragedy while needing to sustain hope" (p. 144). The uncertainties created in such situations place spouses or parents in the position of grieving for the loss of their well loved one but of being unable to take on the role of bereaved individuals as traditionally defined (Fulton & Gottesman, 1980).
Boss and colleagues (Boss, Caron, & Horbal, 1988) believe that under these ambiguous circumstances, family members have difficulty accepting the loss because it is only partial. Consequently, they cannot grieve and move on to restructure the family as would be possible if death was imminent or the patient had already died. This dilemma has been discussed by Boss in her work on ambiguous loss.
defined as a loss in which "the facts surrounding the event are lacking or unclear; there is no certainty about what is happening or how it will end" (Boss, 1991, p. 166). In addition to creating difficulties for grieving family members, an ambiguous loss can lead to boundary ambiguity, where lack of clarity regarding loss of a loved one creates conflict and uncertainty in family members about his or her roles and relationships with them. Boundary ambiguity represents perceptual confusion on the part of family members about whether the afflicted relative is in or out of the family system (Boss, 1991). Boss and colleagues have found evidence that in a highly ambiguous, life-threatening chronic illness (i.e., Alzheimer's Disease), significant boundary ambiguity tends to exist, leading to stress and dysfunction in the family (Boss, Caron, Horbal, & Mortimer, 1990).
To date, however, Boss has not empirically examined boundary ambiguity and family adjustment outcomes in chronic illness situations of high versus low ambiguity of loss, nor has she studied ambiguous situations of serious chronic illness in children as they impact parents. Finally, she has not directly investigated the relationship between ambiguous loss and anticipatory grief. Instead, she has done so only indirectly and implicitly via psychological and physical adjustment outcomes.
The purpose of this investigation is to add to the body of available knowledge regarding anticipatory grief in spouses and parents who must deal with losses varying in their ambiguity. Specifically, the project will compare situations of serious chronic illness in a spouse or child involving high versus low ambiguity of loss. It will examine the relationship of such loss situations to anticipatory grief and boundary ambiguity in the caregiver spouse or parent.
Various authors provide different definitions of grief or use labels such as grief, bereavement, loss, and mourning interchangeably despite differences in their actual meaning (Clayton, 1990; Osterweis et al., 1984). For example, Cook and Oltjenbruns (1989) define bereavement as "the state of being that results from a significant loss (for example, due to death)" (p. 47), while grief is "the outcome of being bereaved" (p. 47), comprised of a variety of somatic, intrapsychic and behavioral reactions. Osterweis et al.
(1984) state bereavement is "the fact of loss through death" (p. 9), and grief is "the feeling (affect) and certain associated behaviors such as crying" (p. 10) accompanying bereavement. Clayton (1990) defines bereavement as "the reaction to the loss of a loved person by death" (p. 34) and grief as "the emotional and psychological reaction to any loss not limited to death" (p. 34). In contrast, mourning is a more agreed upon term. Most recent definitions associate it with the social expressions of grief, including cultural mourning rituals and behaviors (Clayton, 1990; Cook & Oltjenbruns, 1989; Osterweis et al., 1984).
Anticipatory grief is generally conceptualized as grief experienced prior to the death of a loved one. Aldrich (1974) defined it as "any grief occurring prior to a loss, as distinguished from the grief which occurs at or after a loss" (p. 4). Kutscher (1969) has described anticipatory grief as "the extent to which grief is experienced in advance of the actual death of a loved one" (p. 200) and as "the aura of bereavement which surrounds the bereaved-to-be before the death of the chronically ill or terminal patient" (p. XX). Theut, Jordan, Ross, and Deutsch (1991) have recently defined anticipatory grief as "the process of slowly experiencing the phases of normal post-death grief in the face of potential loss of a significant person" (pp.
Despite differences in definitions, most consider grief and anticipatory grief to be complex and evolving processes over time. The grieving process consists of constellations of intrapsychic and interpersonal reactions or tasks with which the grieving person must deal in order to cope with and resolve the loss (Jacobs et al., 1987-88). As part of this complex process, individual differences in duration, intensity, quality, and outcomes of grief are now recognized (Wortman & Silver, 1989).
For purposes of this study, the following key terms and
definitions will be used:
loss - the ending of or undesired changes in a valued relationship through death or serious illness.
grief - a multifaceted process occurring over time, involving physical, cognitive, emotional, behavioral, and social reactionsortasks in response to the death of a loved one. Efforts at coping with and resolving the loss are part of this grief process. Also called post-death grief.
anticipatory grief - a multifaceted grief process occurring over time, involving physical, cognitive, emotional, behavioral, and social reactionsortasks in response to the threatened loss through death of a loved one. Also called pre-death grief.
grief outcome(s) - physical or psychological outcomes associated in grief research with the grief process.
griever - the individual grieving a loss, not limited to loss through death.
bereavement - the fact of loss through death.
bereaved - an individual who has experienced the death of a loved one.
mourning - cultural rituals and behaviors which comprise socially sanctioned expressions of grief, either pre- or post-death.
Various theoretical models have been proposed for understanding observed reactions and changes during the grief process. To name only a prominent few, these include psychoanalytic, attachment and interpersonal, cognitivebehavioral, and stress theories. All major models have been formulated on the basis of post-death grief, with anticipatory grief being assumed to involve the same theoretical foundations (Theut et al., 1991). However, challenges to this belief will be discussed later in the review.
The classic psychoanalytic theory of grief postulates that a grieving individual must withdraw libido previously tied to the lost love object or relationship in order to complete the grief process (Freud, 1917/1957). This task is extremely difficult, involving significant emotional pain and hypercathexis, whereby the griever invests vast energy in preoccupation with the lost love. The griever does so by initially denying the loss, becoming very invested in the lost person and his or her memory, and blocking the outside world. Through this, memories are eventually reviewed and ties to the lost love relationship are slowly withdrawn, with detachment of energy such that investment can occur in new relationships (Freud, 1917/1957; Osterweis et al., 1984).
Interpersonal theories focus mainly on the nature of attachment bonds and the effects of breaking them (Osterweis et al., 1984). Bowlby's (1980) theory of attachment is the most recognized of the interpersonal theories. According to attachment theory, humans have an instinctive need to form strong attachments with others as a survival mechanism.
Young children attach to parents without whom they would perish. Beyond childhood, attachment bonds help insure the survival of relationships and the social group. The grief process is viewed within this context as an unwilling separation which elicits a variety of behaviors and feelings, indicating an attachment bond did exist (Cook & Oltjenbruns, 1989). Interpersonal theorists are particularly interested in so-called phases or stages of grief, with observation of different interpersonal behaviors in each phase (Osterweis et al., 1984). Bowlby (1980), for
example, describes grief as progressing through four phases:
numbing, yearning or searching, disorganization or despair, and reorganization.