Adult Surviving Siblings: The Disenfranchised Grievers

Cemetary with flowering trees

 

Introduction

 

The sibling relationship is distinctive in comparison to all other human relationships.  Siblings share personal and familial history, experiences, values and traditions, are often each other’s first playmate and confidant, and even share 50% of their genetic composition. They can spend 80-100% of their lifetimes with each other, with the feeling of affection and closeness often increasing with age (Davies, 2003).  It is the most equival of all familial relationships.  Siblings expect to outlive their parents and grow old together in what may be one of the most intimate relationships of their lives. However, the death of a sibling signals the end to such promise and marks the beginning of a unique and intense loss experience. Unfortunately, a review of the literature in the field of psychology (and in other fields, such as thanatology and medicine) reveals only a handful of studies that focus attention on this group of unique grievers. In fact, one need only review the books and journals that address death, dying, and grief to recognize that most studies, even in this specialized field, focus on children and adolescent loss of siblings. This article will focus on adult surviving siblings as a distinctive sub-group of the bereaved, and examine the effects of disenfranchisement from individual and larger systems viewpoints. Finally, the clinical implications for psychological treatment will be considered.

Lack of Research in Educational Systems

Despite the universal nature of death, dying, and grief, how people experience their grieving processes and construct their awareness of death has been, in general, omitted from the education, clinical training, and professional experience of the mental health and medical practitioner (Dickinson & Leming, 2006; Leviton, 1977; Mallory, 2003). Even the basics of thanatology (death, dying, and grief) are rarely covered in graduate school programs that train clinicians. Furthermore, a review of the literature regarding adult surviving siblings as a group reveals a significant dearth of research (Godfrey, 2002; Zampitella-Freese, 2005).

Comparatively few researchers have broached this topic, so psychologists, researchers, and others in the mental health and medical fields are poorly prepared to identify an adult surviving sibling’s idiosyncratic understanding and expression of death, dying, and grief. Furthermore, they are unprepared to understand the effects of such a loss to the familial system as well. Without foundational knowledge and training, the practitioner may be unable to create an integrally informed individualized treatment plan for a bereaved sibling and his or her family, inadvertently pathologizing and disenfranchising the client’s grieving process by confusing uncomplicated and complicated grief responses with mental health disorders.

The Risk of Pathologizing Grief

Due to the lack of education and clinical training regarding death, loss, and grief, a clinician may not be aware that the well-known Kübler-Ross’ (1969) stage model of the grieving process is outdated and unsupported. If he or she treats bereaved clients with this model in mind, the result may pathologize a client’s grieving processes as a mental health disorder, such as adjustment or major depressive disorder, when it may be an uncomplicated, or even complicated, grieving process. In the DSM-IV-TR (American Psychological Association, 2000), bereavement may only be diagnosed for two months following the loss, at which point the clinician must identify a different diagnosis (i.e., acute stress disorder, major depressive disorder, etc.) to apply to the client and inform the treatment plan. There are specific diagnostic criteria that allow a clinician to make a differential diagnosis between complicated and uncomplicated grief, major depressive disorder, and post-traumatic stress disorder (Zampitella, 2009b). However, this is not identified in psychology’s classification system or in educational and training programs.

It is just recently that researchers who have been actively involved in the identification of pathological bereavement reactions are now campaigning for the inclusion of prolonged grief disorder (Prigerson, Vanderwerker, & Maciejewski, 2008) in the upcoming DSM-V, scheduled for release in 2013. The development of complicated grief criteria is being clarified in the hope of depathologizing normal and uncomplicated bereavement and correctly identifying complicated bereavement so that appropriate and effective treatment may ensue. However, this inclusion is meeting some significant barriers by the psychiatric board involved in developing current and future DSM editions.

Sociocultural Influences

Thanatology is often relegated to a quiet corner in the fields of psychology, social work, counseling, and nursing.  Ours is often a death-denying culture, so facing our mortality in scholarship, interpersonal communications, and public practices goes against the prevailing attitudes of “don’t ask, don’t tell.” In a culture that emphasizes youth and vitality, Americans continue to push their own mortality out of their awareness, embracing death denial (Becker, 1973).  The elderly are placed into nursing homes, are rarely seen in vibrant roles in the media, and are not considered useful contributors to society due to their decreased earning potential in a materialistic society.  Death is, in American society, a threatening inevitability that remains hidden in the value system of industry and technology (Marrone, 1997). 

The populations that are studied extensively in regard to sibling loss are those who are under the age of 18 or over the age of 65 (Balk, 1990; Davies, 1995; Batten & Oltjenbruns, 1999; Davies, 1998; Fanos, & Nickerson, 1991; Moyer, 1992; Robinson & Mahon, 1997). Studies rarely focus the experience of sibling loss when the individual is adult (18-64) and still has one or both parents surviving (Birenbaum, 2000; Davies, 1988; McCown & Davies, 2001; Moyer, 1992; Worden, Davies, & McCown, 1999).  This unexplored population faces a unique experience when one or both parents are surviving and an adult age person has lost an adult sibling. 

Disenfranchised Grievers

Another essential topic is that of disenfranchised grieving. This occurs when a person experiences a loss that is not openly acknowledged, publicly mourned, or socially supported. The relationship is deemed unimportant, replaceable, or is even stigmatized.  As a result, the bereaved are not given full permission to grieve the loss publicly. They are denied the social support essential to overcoming their loss and the social validation in order to heal (Doka, 2002). The bereaved person is expected to resume his or her life as though nothing has happened. The adult sibling relationship is one that is overlooked not only by society, but also in the fields of psychology and medicine. 

What we do know is that unsupportive, disenfranchised social interactions greatly increase avoidant coping, which in turn can result in complications as the individual is adjusting to the loss. According to Doka (1989), responses from others can be:

avoiding contact

discouraging communication or expressing feelings

giving unsolicited advice

making rude or insensitive comments

expressing inappropriate expectations about the person’s grief responses

 

The responses of the bereaved following the death of a sibling when his or her social support is not available, or he or she is experiencing a disenfranchised loss, may therefore be complicated resulting in the surviving sibling acting or feeling. Doka (1989) states that the following reactions are common to disenfranchised grievers:

 

not recognizing that they have the right to grieve

anger

guilt

desperation

loneliness

hopelessness

numbness

repression and denial

depression

isolation

preoccupation with the deceased

searching behavior

use of avoidant strategies (i.e., drugs, etc.)

IS THIS SECOND LIST ALSO FROM DOKA? ARE THE 2 LISTS QUOTES OR A SUMMARY? It is not a direct quote. I added the reference above

Models of the Grieving Process

A comprehensive exploration of all the models of the grieving process can be found in many books and journals (i.e., Handbook of Bereavement Research, 2001; Handbook of Thanatology, 2007). This article has space only to indicate the main models to ensure a general understanding of the current state of research and literature in the field of thanatology.

Stage models. In the United States, practitioners and mainstream culture (“pop culture”) embraced the original stage model developed by Kübler-Ross (1969) despite the lack of empirical validation or evidence of corresponding subjective experiences of grief. It was originally used to conceptualize the dying, rather than the grieving, process. She stated later in her career that her model was not intended for the bereaved and was not as linear as may believed it to be. Some argue that stage models are too linear and simplified to embrace all the facets of the grieving process. They suggest that if the griever does not experience a stage, that perhaps his or her adjustment is maladaptive.

Task models. Task models, such as Worden’s (2008) four-task model, suggest that there are tasks that need to be “worked through” and completed for the resolution of grief and the formation of new relationships. This model stresses the active, individualistic nature of grieving, but it underestimates the cultural influences and the passive aspects of grieving. Stroebe et al. (2001b) state:

 It is clear that not all grievers undertake these tasks…[and] this

formulation incorporates an implicit ‘time’ dimension…which is a

useful consideration in making predications [SHOULD THIS BE’PREDICTIONS’?]no…it is predictions  about adaptive coping…. Nevertheless, in our view,

additional tasks need to be performed, such as working towards acceptance

of the changed world, not just the reality of the loss. The subjective

environment itself needs to be reconstructed. Finally, we need to specify

that bereaved people word toward developing new roles, identities and relationships, not just relocating the deceased and ‘moving on.’ (p. 388)

Phase Models. Phase models, such as those proposed by Marrone (1997) and Bowlby (1973) suggest a more flexible bereavement process. In Marrone’s model, the bereaved moves back and forth among the phases (i.e., cognitive restructuring, emotional expression), depending on multiple individualistic factors and issues in his or her life. Adjustment of the family to a loss, for example, is addressed in this model. Bowlby, and later Parkes and Weiss (1998), identified four phases, which include numbness and shock, searching and yearning, despair and disorganization, and reorganization and recovery. However, this model does not address the systems that affect the griever, such as the family, in enough detail to be comprehensive.

Cognitive-process models. In these, coping with loss requires positive and negative appraisal of the loss, and includes approach and avoidance of the feelings and reconstructions associated with adjustment. Rumination is one style of coping in which the individual focuses more on the, “distressing aspects and the meanings in a repetitive and passive manner…[which] was associated with higher depression levels months later” (Stroebe & Schut, 2001, p. 388). This style of coping is connected to more complicated grief outcomes. Confronting more positive aspects of the loss results in healthier adjustment, which is identified as “positive psychological states” (p. 389). This is associated with meaning making. However, these models focus on coping and are not a theory of treatment of the grieving process as it relates to therapy.

Social construction models. These have roots in family systems theory (Rosenblatt, 1993). The bereaved must reconstruct meaning between family members, understanding that this process continues over the course of the familial system shifts and development. A narrative is developed regarding the nature of the deceased’s life and death, and the construction around the narrative affects the outcome of the grief. The assumptions about the dynamic relationship are actively explored and adjusted (Stroebe & Schut, 2001). This model is also associated with meaning making but within a family system (Neimeyer, 2001).

Family systems. The focus of the family systems approach is on impact and reorganization of roles, rules, and boundaries as it relates to the reconstruction of meaning (Nadeau, 2001). Multigenerational effects are revealed and the adjustment of family and processes within are identified. In this model, the family is the first unit that tries to understand the loss, often developing co-constructed conclusions (something Nadeau names “family meanings”). The role of an individual includes the expectations that individual holds within the family system (e.g., sibling). These roles are readjusted after a loss. Rules refer to how a family is expected to react to a loss; the wider range of rules, the better the adaptation.

Integrative models. Integrative models, such as Zampitella’s (2009) Integral Model of Bereavement and Bonanno and Kaltman’s (1999) Four Component Model consider bereavement more comprehensively. Bonanno and Kaltman’s model has four components: the context of the loss, the continuum of the meanings that the griever associates with the loss, the changing representations of the lost relationship over time, And the role of coping and emotional-regulation processes, which includes the griever’s strategies. Zampitella’s (2009) Integrative Model is conceptualized in terms of Wilber’s (2000) Integral Model of human experience and functioning. It includes assessment and treatment from four perspectives; individual subjective experience and influences; individual objective experience and influences; collective internal experience and influences; and collective objective experience and influences. Not only are the four quadrants considered, but also how they influence one another. If one of the quadrants is crippled, then the others suffer as well.

Fortunately, thanatologists who work with the dying and bereaved are starting to respond to the need for a more individualized, but systems based, approach to evaluation and treatment (Doka, 2007) because the traditional views of bereavement are being challenged by those in the field (Jordan & Neimeyer, 2007). Regardless of the type of grief experience model, movement through the grieving process is seldom without challenges and very rarely-- if at all--experienced in a strict linear progression.

Case Example

A clinical case study will be used to illustrate the impact of an adult sibling to the family system. Throughout the subsequent sections of this article, it will be used demonstrate the concepts introduced. Finally, the example will be applied to throughout the rest of this article.

Sara is a 26 year-old, African American, single, heterosexual, Christian female who resides with her family of origin that consists of her mother, father, and her two siblings. Her 15 year-old sister and her 20 year-old brother. Late in the evening in December, the family received a call from the police informing them that there had been an incident with her brother, Michael, and that they should go to the emergency room immediately. Upon arrival, they were informed that Michael, who had struggled with substance abuse for many years, had overdosed on heroin. Her parents decompensated in the emergency room, her sister withdrew, and she, as was often the pattern, became the “strong one” by interacting with the police and hospital staff. She also felt sadness over the loss of her brother, but guilt due to the ambivalence she felt towards her relationship with him.        

The subsequent months following Michael’s death proved to be very hard for the family. Her parents pulled back from both Sara and her younger sister, immersed in their own grief. She found herself taking care of her younger sister with little social supports and lack of direction from her immediate and extended family. At times she was approached by others who asked, “That’s horrible! How are your parents holding up?” Sara found herself becoming ignored and resentful, and felt as others did not recognize that she was missing work, her grades were falling, she broke up with her boyfriend, was emotionally reactive, and refused to go to Church, once an important part of her life. At the age of 30, Sara presented to therapy with symptoms of depression and anxiety.

Shifts in the Familial System and Loss of Adult Surviving Siblings

The internal balance of the familial structure after the death of an adult child can be significantly altered, shifting family dynamics and disrupting the stability of interrelated emotional roles for surviving members.  Surviving siblings are in a position not only to carry unmet psychological needs from the parents, but also to be personally susceptible to various psychological disturbances as adults, as in schizophrenia (Fanos, 1996) and depression.  “The death of a sibling may be a double loss to the surviving siblings. Their parents may become so involved in their own grief that they withdraw from the surviving children. Survivors may feel that they cannot show their grief because it will make their parents feel sadder” (Lamers, 2007, p. 275).

Expectations for the care of surviving parents and even for the offspring of the deceased’s children will need to be addressed. Often one sibling was assumed to perhaps provide (or were actively providing) care for elderly parents and/or children. Therefore, the surviving sibling will not only grieve, but also may need to make significant shifts in their responsibilities. This was the case for Sara, whose role of the eldest child shifted into a parental role.

Clinical Implications

       Because of the lack of research with this population, many of the clinical implications for adult surviving siblings and their families must be gleaned from the research on loss of less specific and unique relationships in adulthood while considering the research gathered from child and adolescent sibling loss. Multiple studies suggest that ongoing bereavement counseling for surviving siblings is neglected (Arnold & Gemma, 1994; Fanos, 1996; McCown & Davies, 2001).  While a full review of how to conduct grief specific therapy is beyond the scope of this article, considerations for grief groups for adult survivors of sibling loss will be presented near the end.

Thanatology as a speciality. Clinicians need to become more aware that thanatology is an area of clinical specialty. In fact, there are several organizations, such as the Association of Death Education and Counseling (ADEC), that provide certification, for those who wish to specialize. To receive certification or fellowship, one must pass a national test, meet educational and practice level requirements, and maintain active thanatological continued education. 

Adult surviving siblings. An area that clinicians serving this population may find helpful to appreciate is the unique experience that adult surviving siblings have in their grieving process.  Adult sibling death is a disenfranchised loss that receives little, if any, research.  However, according to Walter and McCoyd (2009), “this is a loss most adults face…and as they continue to live, one’s siblings are [usually] a part of an adult’s life longer than anyone else, making their eventual loss all the more significant” (p. 221). The therapist needs to understand that sibling relationships fall upon a continuum from very little interaction to one of a close and supportive one (Robinson & Mahon, 1997). In Sara’s case, the ambivalence in her relationship with her brother and the embarrassment of how he died had resulted in significant guilt, fear, anger, and confusion, which has complicated her grieving process and resulted in masked grief – she presented for depression and anxiety attacks, but did not recognize it as being connected to the grief she was unable to process in a healthy manner.

Additionally, those in the adult surviving sibling’s social network  “may be unaware of the special bond that may have continued for years [between adult siblings]. In mobile societies people may not live where they were born; thus present friends and potential support systems may not know what to say or do” (Humphrey & Zimpfer, 2008, p. 75). This can increase a sense of isolation. Therefore, recognizing adult sibling loss as a unique loss will help validate the individual’s experience and provide opportunities for healing and empowerment. Additionally, the clinician needs to help the bereaved sibling develop an ability to identify and communicate her feelings when others disenfranchise her, and develop a support network of people who validate her loss.

In our case example, Sara’s therapist educated her about disenfranchised grief and complicated grief responses, normalized her paradoxical feelings, worked on developing ways to assert herself when she felt unsupported, and connected her to a grief group specifically designed for adult surviving siblings so she could feel less socially isolated. Specific grief group considerations will be addressed after family therapy is discussed next.

Family therapy. Family therapy could certainly help to address the specific roles, rules, and boundaries that have shifted as a result from the sibling’s death. Because of the nature of the loss, it is essential that family members share and validate their experiences with the loss and the changes in the family system. Robinson and Mahon (1997) state that the surviving sibling is often overlooked as a griever because the majority of support and attention focuses more on the parents, as was the case in our vignette. Sara’s parents’ disengagement created a sense of resentment, and made her feel jealous of her brother who received more “attention” than she after he died. Her therapist asked for her parents and sister to come to a conjoint session so that she could socialize them to the changes that occur at the family system level and begin to open up a dialogue between the family members. While this was a painful session, it provided them with an opportunity to share their loss experience with one another.

Researchers (Beavers & Hampson, 2003; Cook, 2007; Cook & Oltjenbruns, 1998) have documented the importance of families learning how to share the loss (i.e., post death rituals, reminiscence, etc.) to the degree of cultural acceptance. Families need to maintain open communication, which will allow for the development of shared meanings and perhaps even stronger bonds. They must also learn to “clearly identify and express emotions associated with the ([loss]…and to verbalize their commitment to one another throughout the recovery process” (Barnes & Figley, 2005, p. 311). The focus shifts from the identified patient to how the family must face the loss together. Not only does the family need to adapt to the shifts of emotions, attitudes, beliefs, and loss/changes in roles, but it may need to deal with mundane changes, such as who will care for elderly parents. The therapist also must investigate each family member’s understanding of the loss and what the impact was for each person. Sara’s therapist helped her sister share how she felt smothered by the increased attention of her parents who attempted to avoid yet another loss via their overprotection. Her mother discussed how she felt sad, guilty, and angry towards her husband for, what she felt, was a lack of attention to her son’s drug addiction. Sara’s father explored his feelings of incompetence, failure, and fear of the increasing distance between him and his wife. As a result, Sara’s understanding of the parental role she had to assume was clarified, and she felt less disenfranchised in the conflictual nature of her grief when her parents validated her loss of the adult sibling role. As a result, the family began to shift from a fatalistic frame of reference to a mastery orientation (Barnes & Figley, 2005).

Multi-cultural counseling competence is also important, since relationships between family members are often prescribed by cultural and ethnic expectations (Shapiro, 2007).  For example, perhaps there are traditional ancestral beliefs, expectations, and rituals that should be considered, but without knowledge of these, the clinician runs the risk of making assumptions counterproductive to the healing process. In our vignette, Sara’s therapist was Caucasian, and due to the history of turbulence between the Caucasian and African American cultures, she was cautious about taking on too much of an “expert” role and shifted into a more egalitarian position to reduce the amount of inequality of power in a therapeutic setting.

            Group therapy. Support groups have been proven to be helpful to the bereaved. This is especially true when offered through the formal human service system, and when there is a “failure of existing family and other supports to give the help that is needed” (Parkes, 1998, p. 161). In our vignette, Sara’s family did not offer the support needed for uncomplicated grief, and her counselor’s suggestion of a grief group was then clinically indicated.

However, Corey and Corey (1997) state, “the training standards make it clear that mastery of the core competencies does not qualify a group worker to independently practice in any group work specifically. Practitioners must possess advanced competencies relevant to a particular are of group work” (pp. 8-9). This takes us to the previously mentioned need for clinicians to be trained specifically in thanatology, while also being well-versed in group therapy skills. Too often do grieving individuals attend a linear and manualized grief support group approaches that is informed by inaccurate, stage-like grief models.

Even the members may hold the belief that grief is a linear process with a specific time trajectory. Therefore, grief groups must also have a thorough psychoeducational component so that myths and misconceptions can be dispelled. Therefore, a clinician running an adult surviving sibling support group needs to be not only versed in grief focused group work and thanatology, but also in the unique effects and experience of the loss of an adult surviving sibling.

            Regarding the question of having a closed or open-ended support group for the bereaved, Corey and Corey (1997) state, “hospices typically offer both closed and time-limited groups” (p. 431). Other researchers (Meert, Thurston, & Briller, 2005) agree that bereavement groups should be time-limited. “Bereavement focus groups should not be too long and should have finite and predicable end points” (p. 264). As mentioned previously, grieving is non-linear, and therefore “attention to time is particularly challenging…for bereaved people who come together because of their losses, the ending of the focus group is an especially sensitive time” (Briller, Schim, Meert, Thurston, 2007-2008, p. 266). Therefore, since all members of the group must face the same end date, the shared experience of the ending of yet another important relationship (e.g., to the group and its members) could be a therapeutic opportunity. Groups that have flexible attendance could bring up painful thoughts and emotions that complicate an already difficulty experience. For adult surviving siblings, the prospect of leaving the group after finally receiving the support needed to heal their specific loss may be especially daunting.

Also important is the need for those participating in a grief group to hold more egalitarian positions within the group. Briller et al. (2007-2008) state, “when starting the group, the facilitator needs to encourage an open and frank discussion of death-related experiences and prevent a hierarchical dynamic from developing between the bereaved participants” (p. 262). This is especially important with adult surviving siblings since many have taken on parental roles or have become “invisible” in the family system. The chance for bereaved siblings to reenact these dynamics within a heterogeneous group (i.e., group of bereaved parents, friends, etc.) could be especially high, which could further create difficulties because the group is not intended on being a psychotherapy group, but rather holds a counseling group perspective. For example, the loss of Sara’s brother as an adult holds a specific trajectory in terms of milestones. If a parent who lost a child was included in the support group, Sara may disenfranchise her loss because she tried to be sensitive to the fact there is a parent in the group who would never see his or her child meet those adult developmental milestones. As a result, she shuts her grieving process down yet again or has a negative transference related reaction that thwarts her healing process.

Furthermore, the use of specific terms must be considered. Since we are in a death-denying culture, finding the terms to use in the group that are not calloused, inappropriate, or negative could be challenging and create additional disenfranchisement. This may be especially essential to a successful support group for bereaved adult siblings since their level of disenfranchisement not only occurs at the familial level, but also at the societal level. Pacing is also an issue that should be carefully considered (Meert, et al., 2005). For adult surviving siblings (or any other griever), discussing the loss and grief may have been disenfranchised for prolonged periods of time. Finding words to express the complex emotions when there may have been limited opportunities to do so, or focus the attention of grief upon themselves when previously they could not, could take longer to formulate. Therefore, there needs to be consideration for “space” in sharing their grief story without unneeded interruption.

Conclusion

            The loss of an adult surviving sibling is a unique, and often disenfranchised, loss. Not only must one consider the individualistic implications of this type of loss, but also assess for the impact of the loss on the family system in which the griever in embedded. The importance for the clinician to have specialized training in thanatology is also essential for successful individual and family therapy, and support groups due to the unique nature of the loss and the need to understand the cyclic, integrative, and distinctive experience of adult surviving siblings. Gaining knowledge and training in thanatology will help a clinician provided ethically sound and clinically accurate interventions.

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