Changing Theories Of Bereavement Nursing Essay

Published: 2021-08-12 03:00:06
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Losing a child is recognized as leading to the most devastating and intense form of grief (Davies, 2004; Resse 1997). Parental bereavement has been associated with negative consequences such as increased depression and anxiety (Goodenough et al., 2004; Rubin & Malkinson, 2001) and a negative impact on the parents’ relationships and worldviews (Meert et al., 2008; Rubin & Malkinson, 2001). Some of these consequences can last well into mid-life, with bereaved parents reporting more depressive symptoms and episodes, poorer well-being, and greater marital disruption at midlife when compared to non-bereaved parents of the same age (Rogers, Floyd, Seltzer, Greenberg & Hong, 2008).
Many authors have highlighted the importance of psychosocial interventions and services to help these parents through their bereavement and to counter these potentially harmful and long-term effects (D’Agostino, Berlin-romalis, Jovcevska & Barrera, 2008; DeCinque et al., 2006; Flenady & Wilson, 2009). For example, D’Agostino and colleagues (2008) reported that bereaved parents felt they need bereavement services to be offered to them. However, in a separate study by DeCinque and colleagues (2006) that surveyed bereavement service providers, the authors reported that many bereavement services worked from a limited theoretical background and were not evaluated as to their efficacy in actually helping bereaved parents. Finally, in a review looking at parental bereavement after perinatal death, the authors could not conclude that the interventions in place were indeed beneficial to parents (Flenady & Wilson, 2009). These studies highlight that parental bereavement services are desired by bereaved parents but are not well understood. We know we need services but we don’t know how these services should be offered, or what services would be most helpful.
For many decades, models of grief and bereavement used by clinicians to guide their practice focused on encouraging the parent to let go of the emotional attachment to their lost child (Davies, 2004). In recent years, these models of parental grief and bereavement have been modified as more qualitative research in the field has brought to light aspects of parental bereavement that were not fully understood previously, such as the need for parents to have a continuing bond with their deceased child (Davies, 2004; Klass, 1997). However, there is still a lack of research examining newer models of parental grief and bereavement and how they may be used to guide services. Furthermore, the Institute of Medicine (Field & Behrman, 2003) and several studies (Contro, Larson, Scofield, Sourkes & Cohen, 2002; D’Agostino et al., 2008) emphasize that the needs of bereaved parents are not being met by current bereavement services and practices. Research must be done so that the experiences of these parents’ grief and bereavement may be more fully understood, so as to develop more empirically-informed models; these models could in turn be used to develop better services and interventions.
Although there is growing qualitative research on the experiences of bereaved parents, there is a dearth of research looking at early parental bereavement specifically (i.e., within the first year of the child’s death). The research on early bereavement that exists is mostly quantitative in nature (e.g. Murphy et al., 2002) or involves participants over a wide range of times post-loss (e.g. 7 months – 18 years; Woodgate, 2006) and differences in terms of experiences across time are not elaborated upon. Although the quantitative literature is interesting it does not allow for the elaboration of individual experiences of the parents themselves during the first year post-loss. In addition, there remains very little qualitative research examining parents’ early bereavement experiences specifically, despite the fact that research in pediatric palliative care suggests that parents would like bereavement services in place as soon as possible, even if they do not necessarily ask for those services (D’Agostino, 2008; Contro et al., 2002). To best target interventions and services, this delicate period in the bereavement process must be further researched and better integrated into current parental bereavement models.
Increasingly, pediatric hospitals are recognizing the importance of including parental bereavement services and practices as part of pediatric palliative care (PPC) programs or as separate bereavement programs (Contro et al., 2002; D’Agostino et al., 2008; Macdonald et al., 2005). Many communities in North America offer parental bereavement services such as support groups (Davies, 2004; Rubin & Malkinson, 2001). However, many of these parental bereavement services – whether hospital or community based – are not evidence-based and evaluations and efficacy studies of these programs are lacking (D’Agostino et al., 2008; DeCinque et al., 2006). In addition, the few efficacy studies that do exist have mixed results (Goodenough et al., 2004; Keesee, Currier & Neimeyer, 2008). Therefore, not only do we need to better understand parental bereavement and needs early on, we also need to understand if the services currently in place are actually helpful to these parents. Furthermore, with more recent models being based on parental experiences of grief, future evaluations of these programs should be informed by a clear understanding of parents’ experiences and perspectives on the services they were offered. The proposed project will address these issues by exploring parents’ recent bereavement experiences and their perspectives on what was helpful during this time.
Bereavement in general
The loss of a loved one is typically followed by grief, mourning and bereavement. Grief includes the emotions experienced after the loss, such as sadness and distress, as well as the emotions associated with approaching death (anticipatory grief). On the other hand, mourning refers to the public display or social expression of grief, such as religious rituals (Stroebe et al., 2008). The term bereavement is used to define the situation of losing someone significant (such as parents, siblings, partners, friends and one’s own child) (Stroebe, Hansson, Schut & Stroebe, 2008). Bereavement encompasses grief and mourning, and it defines the process an individual goes through after the loss. The bereaved are thought to go through a "bereavement period," which is the time it takes to adjust to life without their loved one (Egan & Arnold, 2003). This bereavement period has been associated with various biopsychosocial processes and adjustments (Stroebe et al., 2008).
Bereavement is a highly individual phenomenon with many factors affecting how one experiences and copes with his/her grief. However, there are several physical, functional, interpersonal (social), intrapersonal (psychological), and spiritual changes that have been commonly recognized as occurring during bereavement. Physically, the bereaved may experience changes in appetite, sleeping patterns, sexual function, blood pressure, digestion, and overall health. Functional changes may include changes in daily living, economic status, and work productivity. At the interpersonal or social level the bereaved may experience changes in family roles, social status, social skills, and relationships. At the intrapersonal or psychological level the bereaved may experience changes in mood, stress level, concentration, thoughts about death, focus on health and sense of identity. Finally, the bereaved may begin to reevaluate spiritual issues including their beliefs, and existential concerns such as a search for understanding, purpose and meaning (Egan & Arnold, 2003; Murphy, 2008). The bereaved individual may have any collection of these experiences and their own personal and unique experiences as well.
Unfortunately, in some individuals certain aspects of grief (such as intense distress, lasting depression and anxiety, and trauma) are more pronounced. This situation has been termed complicated grief, traumatic grief, prolonged grief and pathological grief (Prigerson, Vanderwerker, & Maciejewski, 2008). For the purposes of this proposal, the term complicated grief (CG) will be adopted. Complicated grief has been thought to lead to job loss, marital disruption, post-traumatic stress disorder (PTSD) and even suicide (Rubin, Malkinson & Witzum, 2008). Some clinical psychologists and bereavement researchers have pushed for a classification of CG in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (Appendix I) so that these individuals receive appropriate interventions for these reactions to avoid the very negative effects associated with them (Enright & Marwit, 2002). There is much debate on whether or not to include CG in the upcoming DSM-V. Several chapters have been written on the subject (Prigerson, Vanderwerker, & Maciejewski, 2008; Rubin, Malkinson & Witzum, 2008) and the OMEGA: Journal of Death and Dying dedicated a special issue on the subject in 2005 (Volume 52 Issue 1). Arguments for inclusion of CG include the need for intervention in extreme cases to prevent collateral loss (job, marriage, suicide) and ease suffering. Counter arguments center around the "problematization" or "medicalization" of grief, with a certain consensus being that depression and anxiety (and other psychological sequela) are commonly associated with normal grief reactions, and it is only when these normal reactions become elevated to extreme and lasting levels that a clinical diagnosis is relevant or appropriate (Enright & Marwit, 2002; Prigerson, Vanderwerker, & Maciejewski, 2008). Although the proposed study will not focus specifically on CG, it is nonetheless important to mention the debates that exist on the classification of grief as problematic and the symptoms thought to be associated with it (Appendix I).
Parental bereavement
During those first years after Leah’s death, I experienced the intense and varied emotions that accompany acute grief, as well as physical symptoms – chest pains and insomnia. I went for counseling, took antidepressants and sleeping pills, and despite the warnings of my psychiatrist used alcohol to numb the pain. I continued working, finding work was the only place I could get any respite from grieving. It took every ounce of energy I had to focus my mind while at work. I often cried as I drove to and from my office each day. My nights were filled with images of Leah’s death and funeral" (Talbot, 2002, p.xxvii)
As mentioned previously, the loss of a child by a parent has been recognized as the most intense and devastating form of grief (Davies, 2004; Resse 1997). In current North American society the death of a child is considered unnatural as child deaths in this society are relatively rare (Field & Behrman, 2003). When the loss of child does occur, this loss impacts parents, families and society itself (Rando 1986; Riches & Dawson 2000) and it has been noted repeatedly as unusually difficult, prolonged, extensive, and profound (Malikingson & Bar-Tur, in press; Rando, 1986; Rosenblatt & Burns, 1986; Rubin & Malkinson, 2001;Walsh & McGoldrick, 1991).
Changing theories of bereavement
Early theories of grief. Sigmund Freud has been noted as developing the 20th century conceptualization of grief and "grief work" (Freud, 1961a). Freud believed mourning served the function of detaching survivors’ memories and hopes from the deceased (Freud, 1961a, p. 253). For many years, parental bereavement interventions – based on Freud’s conceptualization - were focused on helping the parent to let go of the attachment to the child they had lost (Freud, 1961). However, the cognitive task of detaching from the loss does not seem necessary for successful adaptation to post-loss life (Wortman & Silver, 1989). The psychoanalyst Lindman built on Freud’s theories by characterizing normal and abnormal grief, and developing the concept of grief resolution (Lindman, 1944). For Lindman the final task of grief work was to break the bond with the deceased (Lindman, 1944). Many of Freud and Lindman’s concepts are relevant to current theories of grief such as sadness and anger as manifestations of normal grief (Worden, 1991). However the concept of letting go of the deceased and grief resolution have come under criticism by many parental bereavement theorists (Davies, 2004).
Continual bonds and attachment. Parents have a strong and lasting emotional bond to their children (Rubin & Malkinson, 2001). This bond, termed attachment, has been researched extensively when the child is alive (Bowlby & Parkes, 1980). However, after more research was done on how these bonds change and evolve after the child has died, it has been found that parents keep a long-term continual bond with their child and trying to break this bond may not be helpful to the parent during their bereavement (Klass 1993, 1997, 2006; Talbot 2002). In addition, sociological and ethnographic work on parental bereavement has demonstrated that the act of sharing the memory and significance of their child’s life helped parents to create an internal image they could continue to connect to (Riches & Dawson, 1998). These findings have indicated a need for change in parental bereavement models from one of letting go to a newer model where continuing bonds are encouraged as the parent internalizes the biography of their child and develops within themselves the concept of their child and their child’s life (Walter, 1996). Researchers and clinicians are beginning to find that parents need to talk about the meaning and influence their late child continues to exert upon their life, and moreover, they derive consolation and solace from carrying out rituals associated with their child (Macdonald et al., 2005; Riches & Dawson; 1998).
Psychosocial aspects of parental bereavement
It is important to recognize that the death of a child happens within a particular social context. The significance of the social context of grief has been highlighted by many authors for grief in general (Klass, 1999; Stroebe & Schut, 1999; Walter, 1996) and parental grief specifically (Barrera, et al., 2009; MacDonald et al., 2005; D'Agostino et al., 2008; Riches & Dawson, 1996), and can be thought to consist of relationships with the self, surviving children, partners, and the greater social world. After the death of their child parents have reported changes in these personal relationships (Barrera et al., 2009). In terms of the greater social world, bereaved parents must confront the fact that death is not commonly discussed in our society and many people will not grasp or understand what they are going through (Riches & Dawson, 1996).
After the death of a child, the parent is forced to reconsider their self-identity (the individual’s representation of him/herself spiritually, physically, morally, and socially). This task may be quite difficult for parents, as it involves incorporating the experience of losing a child into a redefined identity and forming new meanings and objectives for life (Barrera et al., 2009). Moreover, in addition to changes in self-identity, the relationships bereaved parents have with their partners and surviving children are also subject to change (Barrera et al., 2009). Stable family relationships have been reported by bereaved parents to be helpful throughout adjustment to life without the child and can give added meaning to the parent’s life (Barrera et al., 2009). On the other hand, instable family relationships have been reported by parents to contribute to feelings of loneliness, frustration, and disdain (Barrera et al., 2009).
At a more existential level, the bereaved are often reported to search for meaning in the loss of their loved one. Bereaved parents have reported seeking meaning from religion, science, and a belief in destiny to address their existential concerns regarding their child’s death (Barrera et al., 2009). The ability to derive meaning from one’s loss has been credited with leading to posttraumatic growth (Calhoun & Tedeschi, 2001). Posttraumatic growth involves regaining equilibrium, reformulating dissolved assumptions about the world, and renewing the sense that life is worthwhile and purposeful (Barrera et al., 2009; Calhoun & Tedeschi, 2001).
Theories of parental bereavement continue to change as increasing qualitative research in the field has elaborated or changed previously held concepts (Arnold, Gemma & Cushman, 2005; Barrera et al., 2009; Davies, 2004; D'Agostino et al., 2008; Rando, 1986; Rees 1997). Nonetheless, more qualitative research is needed to add to the knowledge base on parental bereavement and further develop these theories from the individual perspectives of the parents themselves. Furthermore, these theories are useful for examining parental bereavement, however additional work must be done to inform clinicians and researchers on what is helpful to bereaved parents and what can be offered to them in terms of services and interventions.
Parental bereavement services
Currently, most children who die in North America do so in the hospital (Davies, 2004; Rubin & Malkinson, 2001). For this reason, several organizing bodies have highlighted the need for pediatric palliative care (PPC) programs that include bereavement care (AAP, 2000; Field & Behrman, 2003). In addition, a recent study looking at practitioners’ views on research priorities in PPC found that exploration of families’ needs during bereavement was one of the four top priorities (Steele et al., 2008). These position statements and studies suggest the need for bereavement services, which can be complimented by services based in the community such as support groups and bereavement counseling. In addition, information from the parents using these services is also needed to obtain specific information about how these services may best be designed and implemented.
Despite the fact that many investigators have reported that bereavement programs are necessary to address the needs of bereaved parents (DeCinque et al., 2006, Goodenough et al., 2003), there is a dearth of evaluation research on bereavement services and the few studies of the efficacy of these programs often report insufficient data to make conclusions. For example, a Cochrane review of support for families after perinatal death concluded that there was insufficient information available to indicate whether or not there is a benefit to interventions aimed at providing psychological support or counseling to these families (Flenady & Wilson, 2009). Another review of bereavement interventions in general, such as pharmaceuticals, cognitive-behavioural interventions, psychodynamic interventions and systematic approaches, reported that outside of the efficacy of pharmaceuticals to treat bereavement-related depression, there is no consistent pattern of treatment benefit across the other forms of intervention (Forte et al., 2004).
The few evaluations and needs assessments that explore parental bereavement programs and services that have been conducted have highlighted that bereavement services should be initiated as soon as possible. Indeed, parents have indicated that they would like such services before the child dies to help them cope with anticipatory grief and preparation for the child’s death (Contro et al., 2002; D’Agostino et al., 2006). However, there is very little research on parents’ experiences around this time and within the first year of the child’s death.
There have only been two qualitative studies looking at early bereavement specifically (within the first year post-loss) (Barrera et al., 2009; D’Agostino et al., 2008). Both these studies were conducted at the same hospital and involved parents that had lost a child to cancer. These two studies offer interesting findings in recent parental bereavement and adjustment to life post-loss. The results from the proposed study will help to confirm or challenge the findings put forth by these authors. Moreover, the proposed study will be unique in that it will involve parents that have lost children to various causes (e.g. cancer, accidents, neurological diseases, etc.), at various ages (infants to adolescents) and it will be conducted in a different hospital and community with different services offered to bereaved parents. In addition, the proposed study will be using a methodology specifically designed to inform services.
The proposed doctoral research will further elucidate how recently bereaved parents address their grief. This will involve attending to the following related questions: what do these parents consider helpful during their bereavement, and what are their perspectives on current bereavement services and practices? By exploring these questions, the following three objectives will be pursued: 1) to gain an in-depth understanding of how bereaved parents address their grief in the first year post-loss; 2) to inform (and potentially validate) models of parental bereavement used to guide bereavement services, programs, and interventions; and 3) to provide feedback to specific service providers on their practices.

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