Prevalence of Complicated Grief and Posttraumatic Stress Disorder in Children and Adolescents Following Sibling Death

Complicated Grief (CG)

Characteristics of CG may include an inability to accept the death, denial, and avoidance of reminders relating to the death, an irrational sense of longing to be with the deceased, and persistent and intrusive thoughts about the deceased sibling by the survivor. “Child loss is thought to be one of the most traumatic events possible in human existence. The resulting grief appears to be more severe” (Bernstein et al., 1989, p. 227) for the family than loss of any other family members including parents, spouse, grandparents, or adult siblings. When people have difficulty processing grief and the initial bereavement period lasts longer than 15 months before returning to some semblance of normal societal functioning, survivors may be thought to be experiencing some form of CG (Auman, 2007).

Maercker (2007) reports that the process of intense grieving requires doing “grief work”—actually devoting time and energy to reliving the trauma associated with extreme loss and actively developing coping skills. This process can prove traumatic in itself and be quite time consuming, and may require the help of a trained therapist. However, “people who hold positive expectancies about the future or dispositional optimism are more likely to employ effective coping strategies” (Bonanno, Pat-Horenczyk, & Noll, 2011, p. 118) and exhibit less evidence of physical symptoms than those exhibiting negative coping skills. This is known as coping flexibility. According to Berk (2010, p. 662), adolescents often keep their grief to themselves due to peer pressure as well as a desire to keep their parents from hurting. This can lead to depression and “acting-out behavior.” Through confronting emotionally painful thoughts, memories, and feelings one is able to more thoroughly understand the rationale behind the impact of the traumatic loss and therefore attempt to find meaning in life and, possibly, make some sense from the senseless.

Traumatic Grief

In children and adolescents, unresolved CG may also lead to manifestation of traumatic grief (TG). According to Allen, Oseni, and Allen (2011, p. 1), TG is a “condition in which posttraumatic stress symptoms develop after the traumatic death of a loved one” and both “unresolved grief and PTSD” are present. Risk factors that may influence the development of complicated traumatic grief (CTG) include the type and suddenness of the death, whether or not the survivor witnessed the death, self-blame, and emotional attachment to the deceased. Brown et al. (2008) reported that the more violence with which the death occurred, the greater is the likelihood of developing TG. Also, “children are not small adults; they experience distress but manifest it in developmentally distinct ways” (Brown et al., 2008, p. 904).

According to Lohan and Murphy (2002), surviving siblings may face additional challenges in dealing with traumatic loss based on their developmental stage at the time of bereavement. Adolescents may experience even more difficulty due to the intense physiological and social challenges at this period of life. One question to ask in identifying CG as opposed to TG is “At what point does grief manifest as traumatic?” For example, would an adolescent boy be exhibiting signs of TG if he wore his elder deceased brother’s clothes every day, or if he chose to not look at photos of his brother with other family members? If an adolescent girl developed nightly insomnia and could no longer sleep in the room which she had shared with an older deceased sister since birth because she was now “scared,” would this be considered a traumatic reaction? If several years following death the parents have kept the deceased child’s bedroom as it was, is this a sign of maladjustment and CG? At what point does grief cross over into development of anxiety disorder?

Anxiety Disorders and Posttraumatic Stress Disorder

The Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revision (DSM-IV-TR; American Psychiatric Association, 2000, p. 429) defines posttraumatic stress disorder (PTSD) as being “characterized by the re-experiencing of an extremely traumatic event accompanied by symptoms of increased arousal and by avoidance of stimuli associated with the trauma.” Generalized anxiety disorder is described as “excessive anxiety and worry (apprehensive expectation), occurring more days than not for a period of at least 6 months, about a number of events or activities” (p. 472). Bereavement is mentioned in the DSM-IV-TR in the category of adjustment disorder. Prolonged bereavement may be classified as an adjustment disorder when the period of mourning following the death of a loved one lasts longer than expected or contains more intense feelings than is considered normal. For instance, not wearing a deceased siblings clothes for fear that one might die also if wearing them, or insomnia in conjunction with development of eating disorders would indicate extreme anxiety, as would development of abnormal behaviors such as extreme hand washing or refusal to bathe. Vigilance for signs of obsessive–compulsive anxiety disorder or suicidal ideations may also be necessary. Refusal to accept the death, or refusal to discuss the impact of the death on oneself or the family, may also indicate development of anxiety disorders and/or PTSD (Maercker, 2007).

Prevalence of CTG and PTSD Following Sibling Death

Several research studies were examined for this review. Among them were comparisons of parental reactions versus reactions of children and adolescents, studies of reactions to violent and sudden deaths versus illness, and the impact of trauma on children and adolescents following sibling death as graded on various trauma scales. Grief reactions were measured and reported with various factors in mind, such as cause of sibling death, age of the surviving sibling at the time of death, parental reactions and family dynamics, support systems in place before and after sibling death, therapeutic interventions, and finding meaning in life following the death. PTSD and CG appear to be prevalent in traumatic grief of children and adolescents following sibling death in most cases when some or most of these factors are present.

The first study reviewed was a case study reported by Allen et al. (2011) which involved a 16-year-old, White male from the southwestern United States experiencing PTSD, depression, anxiety, and somatic symptoms 8 years following the death of his older brother in a car accident. In individual therapy sessions, he reported experiencing guilt for his brother’s death and anger at his mother for not communicating openly with him about his brother. The client also reported poor academic achievement and insomnia. In therapy sessions with the mother, she reported discomfort at mentioning her deceased son by name for fear of upsetting her younger son, as well as herself. The therapist suggested a trauma-focused cognitive behavioral approach in treating the family as a unit with continued individual therapy for the son.

Applebaum and Burns (1991) investigated PTSD in siblings and parents experiencing bereavement due to accidental death and homicide. Twenty families from central Michigan were interviewed. Parents were asked to complete the PTSD-Parents questionnaire and children were administered the Child Reaction Index, as well as a PTSD self-report. Results showed that 45% of children exhibited symptomatology of PTSD across the board no matter the means of death experienced by their sibling. Also, 95% reported six or more symptoms of PTSD, whereas only 40% met the criteria based on the ratings of their parents. Parents in the homicide group showed higher PTSD results than parents in the accidental death group, but both groups showed surprise at the level of trauma reported by their surviving children. This is possibly due to their own levels (35%) of PTSD and them not being aware of the emotional reactions of their surviving children. Results indicate that children and adolescents internalize grief, and are not as resilient as viewed by adults, and need compassion and understanding in order to move forward in the grief process.

Bernstein, Duncan, Gavin, Lindahl, and Ozonoff (1989) reported on four case studies involving 5- and 6-year-olds whose siblings had died. Each of these children was experiencing anger and/or depression. In each case, interviews with a therapist showed that the grief had not been worked through at all in any of these families. Bernstein et al. also observed that grieving parents may recognize the need for family psychotherapy, but possibly view it as a “Pandora’s box” that is better left unopened. However, by not releasing the ghost of the lost child to a loving memory, families are not as free to express emotions, develop new relationships with one another, and move forward into “creative living” (p. 231).

In a study conducted by Brown et al. (2008), 132 bereaved children and adolescents were asked to complete The Characteristics, Attributions, and Responses To Death, Youth and Parent versions, Youth Report that assesses child exposure and reaction to death, perceptions of death, family/caregiver relationships, and participation in death rituals. Participants consisted of 7- to 18-year-old Caucasian, African American, and biracial children living in the northeastern United States who had lost a sibling to violence or illness. Results showed that CTG was significantly higher, the more traumatic the death experienced, and was also dependent upon emotional reaction of the caregiver to the death.

Dillen and Fontaine (2009) conducted two studies on CG in adolescents and children in Belgium. In the first study, 245 adolescents (mean age of 16.4) bereaved of a grandparent were studied using the Traumatic Grief Inventory for Children, the Beck Depression Inventory for Youth, and the Beck Anxiety Inventory for Youth. Results indicated that 66.5% were in the average anxiety range and 77.7% were in the average depression range. The second study consisted of 351 adolescents (mean age of 14.8) who had lost either a parent or sibling to death by violence (homicide, suicide, or accident) or chronic illness. The second group was administered the same inventory tests as the first. Findings showed that adolescents bereaved of a Grade 1 relative (parent or sibling) showed significantly higher levels of CG than those bereaved of a grandparent. Of the second group, those bereaved of a parent or sibling to violent means showed significantly higher levels of CG than those who lost someone due to illness, as well as experiencing symptomatology of anxiety and depression.

Golden and Dalgleish (2012) investigated three different population samplings of bereaved adults in Croatia who had lost a Grade 1 relative to violent death or illness. The first group was studied using a correlational design, the second-group study looked at high versus low CG symptoms, and the third study compared those with a CG diagnosis to healthy bereaved controls. Results showed evidential support for a cognitive behavioral approach in treatment of CG separate from that used to treat depression and anxiety.

Horsley and Patterson (2006, p. 135) conducted an investigation as to effects of parent communication on development of CG in adolescent siblings experiencing bereavement. Five New York metropolitan adolescents aged 14–17 who had experienced the sudden death of a sibling 12–24 months prior were included in the study. Participants included the children and their parents who met with the researcher 3 times weekly for 21 weeks, as well as completing a daily self-monitoring form and completing the Parent–Adolescent Communication Inventory at the first and last sessions. Results indicated that adolescents felt the need for more increased emotional support from their parents in experiencing sibling loss and that they felt that they had lost their parents in addition to their sibling. Parents indicated surprise at the findings and expressed belief that the surviving children were more emotionally healthy than results showed. Results indicate the need for parent/child communication and guidance intervention which will lead to “healthier resolution of the loss.”

Results of these studies indicate a prevalence of PTSD and CTG in conjunction with the aforementioned factors following sibling loss. The idea of coping flexibility and dispositional optimism are essential elements in overcoming PTSD in CTG and minimizing the symptoms and behaviors associated with it, especially in children and adolescents. Dealing with trauma can be time consuming and involves a great deal of work, according to Bonanno, Pat-Horenczyk, and Noll (2011), especially when trauma results from loss of parent or sibling. Risk factors for children and adolescents in developing PTSD and CTG occur in several domains including “cognitive, developmental, familial, or ecological” contexts (Brown et al., 2008, p. 902). All of the factors mentioned in these studies are covered within these contexts in sibling bereavement, no matter the cause of death.

Allen et al. (2011, p. 1) report that graphic details regarding the death of a loved one may “predispose one to the onset of traumatic grief.” Symptoms of CG which were reported most frequently by children and adolescents following sibling death included estrangement from others (95%), intrusive thoughts (80%), and psychological distress at symbolic events (85%) such as birthdays and death anniversaries (Applebaum & Burns, 1991). According to Piaget, as cited by Berk (2010), children are not capable of concrete operational thought until 7 years of age, but the imagination is left intact for a lifetime. It is the imagined scenario involving death which terrifies children; the fear of the unknown. When the shadows remove a member of a family’s intimate circle, as in someone who is not only a sibling but also a friend and ally, children and adolescents are left to their own imagination. This entity can unwittingly provide details that are much more traumatic than reality.

Sibling Relationships

The sibling relationship has been called the most complicated of all family ties. Siblings may be friends, or they may be enemies, but more than any other they are tied for life, or so it should be. They share a common bond through their parents and play a large role in identifying one another as unique, yet connected, individuals. Even in the case of parental divorce, the siblings remain connected to one another. “It has been determined that siblings are likely to spend at least 80-100% of their lifespan with each other, more time than with any other family member” (Bank & Kahn, 1982, as cited by Packman et al., 2006, p. 820). The death of a sibling, especially in youth, is out of the norm for one’s expectations of life. The surviving sibling is now left to find his or her own personality in the absence of a member of their family of origin and in the midst of the grieving process; a process that may last for a life span. The siblings are supposed to share the burden of caring for their parents into old age, and support one another in preserving family history. When the burden begins as shared and is suddenly dropped onto the shoulders of one, any number of extreme emotional reactions may occur. These may range from sadness to disappointment to anger, depending on the relationship shared by the siblings.

Loneliness may also become an issue and opens the door to depression. Nouwen (1972, p. 83) says that “loneliness has become one of the most painful human wounds.” Care must be taken to ensure that the emotional needs of the surviving sibling are met by showing love, affection, and a validation of feelings to them. Lohan and Murphy (2002, p. 93) observe that grief in adolescents may be complicated by the fact that they face normal developmental transitions in addition to facing loss of someone who may have been their “idol, admirer, companion or rival, hero or scapegoat.” Sibling death may also mean the loss of a “playmate, confidante, role model, or friend. If one sibling dies, the remaining sibling essentially loses part of themselves” (Packman et al., 2006, p. 820). Siblings are connected to one another in a way that is unique in comparison to relationship with other family members. They are joined not only by blood but also by alliance, in the struggle for dominance of the household and its occupants.

Sibling Bonds After Death

The idea of sibling bonds continuing beyond death was first studied by Davies (1991, 1999) and Hogan and DeSantis (as cited by Packman et al., 2006). It is possible, and even necessary, in bereavement to acknowledge the emotions brought forth through the death of a sibling. Some siblings may feel guilt for being alive or from past disagreements or jealousy (Forward & Garlie, 2003). Helpful behaviors may include allowing the sibling to keep a possession of the deceased child, move into his or her room, or attend services and celebrations of the deceased child’s life. Children and adolescents need to feel that it is ok for them to speak of their sibling, share memories, wonder what they would think of him or her as time passes, and incorporate the sibling into life passages which they missed such as weddings, graduations, and birthdays. At the time of (what would have been) his brother’s 18th birthday, an older sibling invited his younger brother’s friends to a birthday party honoring the deceased and each brought a memento to share with the others. This allowed everyone present to share in the milestone and acknowledge their grief in a healthy way. Finding meaning in life in spite of losing a sibling and feeling as if the sibling carries on with a purpose, even though physically absent, may be comforting to the surviving sibling. In this way, the bond continues and may even deepen, especially when the survivor is younger. This constitutes healthy relationship and grief (Smith, 1997). An important fact to remember is that grief is not bound by time, and the entire family will continue to miss their loved one for the rest of their lives.

Impact on the Family

The impact of the death of a child has great implications on the existence of a family. Death of a child reaches deep into the roots of family dynamics and effect is evident years, even decades, into the future. In speaking to siblings who experienced the death of a brother or sister as many as 40 years earlier, one survivor talks of the impact on present day relationships, especially in referring to relationships with his own children.

Every time I get on to them it brings back a memory of waking up at 12 years of age and seeing my 15 year old brother lying dead in his bed (as a result of brain aneurism). I worry if I get on to them (my children) they will die and the last thing I would have said was something critical. (L. Duncan, personal communication, July 2012)

Children and adolescents often carry a huge burden within the family grieving the loss of a child. Siblings do not want to burden or upset their parents any further by discussing their own grief, so they keep emotions deep within themselves. They may also feel the need to take their sibling’s place in the dynamics of the family.

Parents may not be aware of these intense emotions because of their own shock and traumatic grief symptomatology (Applebaum & Burns, 1991). According to Stephens and Vredevelt (2006, p. 64), grieving parents “feel like they are losing their minds. Deep sorrow can be terrifying.” In responding to questions regarding actions that helped with the initial, extreme grief immediately following a sibling’s death some children responded that knowing their mothers were there for them made it bearable (Lohan & Murphy, 2002). At the same time, other children responded that their parents, particularly their mothers, were too emotionally wrought to comprehend the grief of their remaining children (Rogers, Floyd, Seltzer, Greenberg, & Hong, 2008).

Mitchell (2004, p. 152) states that males and females grieve differently. “Our sorrow runs as deep, our anguish is as all encompassing, and we live with the same terrible hollow in our hearts as do our wives” reports one grieving father, “although we do not exhibit our grief as publicly as our wives.” In his book Quiet Strength (2007, p. 273), Coach Tony Dungy says of his son’s death that people ask if he considers his grief cycle to be typical and what lessons he learned from it. “There is no typical grief… and it’s not something I went through. I’m still grieving.… and I don’t know that I will ever look at this in the past tense, as something I’ve emerged from.” In addition to grief, parents, especially mothers, may experience intense feelings of guilt that they were not able to protect their child from accident, harm, or illness. These feelings may be intensified in cases of violent or sudden death when there is no time for reflection or preparation for the separation of death, and may be more difficult to work through than the actual trauma and shock surrounding the death (Bernstein et al., 1989).

Marital relationships often become strained following the death of a child, especially if one partner places blame on another, or grief takes different paths (Lieberman, 1989). Communication among all family members is important, but even more so between parents sharing such a heartbreaking and devastating loss. According to Davies (1988), surviving family members will have fewer difficulties with coping in bereavement of a child if they invest a great amount of time in commitment, help, and support of one another. Surrounding themselves with a strong, positive support system of family, friends, neighbors, church, and community members can also be of tremendous benefit in the process of grief, along with the knowledge that this is a process which takes years to work through and may never be fully resolved (Auman, 2007).

Finding Meaning

In personal interviews conducted with six bereaved adults who lost a sibling in childhood between the ages of 12 and 22, during the years of 1928–2008, all were in agreement that they, as well as other family members, experienced symptoms of PTSD and CG as described to them. The sibling deaths occurred by falling while jumping on a bed, brain aneurism, two in car accidents, and two as a result of cancer. The oldest interviewee, who lost a 4-year-old sister in 1928 when she died after hitting her head while jumping on the bed, reported much more family and community support than any of the others. Death, she says, was dealt with much more openly then. She reports that family came from other states, although travel was difficult, in order to show support. People discussed the death and wept openly, included all members of the household in the grief process, and some even stayed weeks in order to help the family move toward some semblance of recovery from the shock (O. Mitchell, personal communication, July 2012).

According to the findings of the literature reviewed, the aspect of finding meaning in life for survivors, as well as making meaning of the lives of the deceased sibling, appear to be paramount in recovery from initial trauma and progressing toward those considerations of normal bereavement. Several siblings experiencing the loss of a brother or sister in childhood were interviewed in an informal survey for this article, and asked this question. Of the six questioned, five said that they felt even now, many years later, some semblance of responsibility for the death of their sibling even though three deaths were the result of accidents and two were from cancer or congenital illness. They all agreed that through continued life in the form of education, marriage, and procreation of children, they feel some degree of grief resolution by carrying on for their sibling, as well as for their parents.

One woman who, as a college student, lost both of her brothers to cancer over a span of 5 years felt an urgency to travel and experience life in a manner completely opposite to her nature. “I felt as if I needed to do all the things my brothers had dreamed of, but never got to do” (N. Mitchell, personal communication, July 2012). Through strength, resilience, and the concept of dispositional optimism she was able to do these things and her parents, utilizing their own resilience and coping skills, were able to let her go. Another sibling survivor, however, at 18 experienced the sudden and traumatic death by car accident of her 15-year-old brother. Her parents were so overcome with grief that she was responsible not only for caring for them but also for arranging her brother’s funeral, as well. Not many months later her parents decided to sell their home and those arrangements, too, fell upon her.

It wasn’t until 4 years later when I was arranging their 25th wedding anniversary that I fell apart. I never would have dreamed that what should have been a happy event is what made me snap, but I was suddenly overwhelmed with anger at my parents, and my brother for leaving everything to me. (A. Jarrett, personal communication, July 2012)

At that point, she entered grief work with a therapist and began her journey toward finding meaning. Only then, she says, was she able to move forward from the trauma that had reshaped her life.

According to Packman et al. (2006), sibling bonds change over time, but in the case of sibling loss the “task” will be to learn how to act in the world without enjoying the company of our loved one by our side. In Man’s Search For Meaning (1959), Viktor Frankl states,

We must never forget that we must also find meaning in life even when confronted with a hopeless situation, when facing a fate which cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one’s predicament into a human achievement. (p. 112)

Conclusion/Personal Insights

Both of my parents lost a sibling in childhood. My father lost his 4-year-old sister due to accident and my mother lost her 15-year-old brother due to congenital illness. Those losses, unforeseen by anyone at the time, would deeply affect me 80 and 58 years later, respectively. My father’s family managed their grief in a healthy way. My Aunt Virginia’s death was openly discussed as the tragedy it was, emotions were openly expressed and deeply felt, and she remained very much a part of their family years into the future. My father’s family is an openly loving, exuberant group of people and smiles and tears, both, come easily to them.

My mother’s family, on the other hand, did not process their grief in a healthy way. I was 10 before I ever knew that I had an uncle who had died as a child, and he was never mentioned. There was one picture of him in my grandmother’s house, and none in our house. We were told not to mention his name (Danny Joe) for fear of upsetting my grandmother and making my grandfather angry. Tears were not allowed in any circumstance and, if they appeared, one was told that there is always someone who lives with worse circumstances. Although they are really good, kind people, my mother’s family is closed off emotionally. I believe that my father’s family exhibited little evidence of PTSD and CG due to resilience and coping flexibility, but my mother’s family did, and still does, show signs of unresolved grief.

On April 5, 2008, my 17-year-old son was killed in a car accident. This was a very public death and much in the news for months following the accident due to the fact that three boys were killed that day on a dangerous stretch of road which has since been torn apart and restructured. There were newspaper articles and television news reports, community and school–related ceremonies and memorials, and a concert given in memoriam in front of 10,000 fans by an international music celebrity.

Our family was very much in the public eye for the first year of our mourning. Through all of this, our younger son was pushed to the forefront by his brother’s friends. They looked to him to be the connection to his much-beloved older brother. His school baseball team, of which both boys were prominent athletes, looked to him as a new team leader. He was invited out by people he barely knew and his face and personality were regularly compared to those of his brother. Where the one was outgoing and involved, the other was shy and introspective. Where the one was considered a community hero before the accident as well as after, the other was known as the quiet one. Through it all, our younger son stood tall and proud and persevered in spite of his extreme shyness and discomfort, and in the face of his devastating loss and mounting grief, in order to honor his older brother.

As parents, my husband and I did everything we could to be there emotionally for him and remain cognizant of his emotional state. Having grown up as a witness to the “right” and “wrong” way of coping with grief in the death of a child, I read all of the books, kept communication lines open, and made the family attend therapy sessions. In spite of these efforts, my younger son, now 18, suffered the effects of CTG and PTSD. There are too many factors involved in the death of a child for the process of grieving to run a smooth course. I have learned that there is no right or wrong way to grieve, and no definitive way to prevent some form of PTSD and anxiety from appearing. All one can do is the best one can in horrible circumstances and just try to get through each day. People in our community tell our family on a weekly basis how much we are admired for our courage. I tell them that we have no other choice. When it comes to courage, the real hero is the little boy who chose to honor his big brother by living a life that included him, in spite of the loss and emptiness that he experiences every day. He is growing into a young man, but part of him will always be a boy reliving the moment that changed his life forever.

I not only live each day in grief, but I live each day thinking about living each day in grief. (C. S. Lewis, A Grief Observed, 1961)

Implications for Future Study

Evidence related in this review indicates the need for additional studies in the area of CG and PTSD in children and adolescents following sibling death. Yalom (2002, p. 125) says “From the beginning of written thought humans have realized that everything fades, that we fear the fading, and that we must find a way to live despite the fear and the fading.” No one fears the unknown more than children. When facing death, they are confronted with a monster without a face and are not articulate enough to express those inner emotions that may consume them if not released. Children and adolescents need help from caring adults who can lead them through the emotional minefield of grief before it evolves into CG and anxiety.

Studies in cognitive behavioral therapy (CBT) with emphasis on exposure/response prevention may be beneficial in dealing with death and other trauma, according to Lewin et al. (2005). Family-focused CBT has proven successful in the treatment of anxiety such as obsessive–compulsive disorder resulting from family inability to process difficult life situations as described by Peris et al. (2012). Focusing studies on results of CBT in treatment of CTG and PTSD in children and adolescents seems like a natural next step in promoting awareness of these conditions for parents, school counselors, medical professionals, and psychotherapists. Gestalt play therapy is another construct mentioned in the treatment of anger related to grief, although no definitive research mentioning play therapy as a treatment specifically related to children and adolescent sibling loss was discovered (Kottman, 2011). Therefore, this may be an area that would translate into effective research.

According to Balk (1991), longitudinal studies are needed to assess effects of sibling bereavement on future relationships. Most of the research available consists of correlational studies involving immediate reactions and unmet needs of children and adolescents in the face of recent sibling loss. In speaking to adult survivors of childhood sibling loss, there is evidence that longitudinal studies dealing with effect of unresolved death trauma and future relationships are indicated.