Though children have often been called “the forgotten mourners,†social service organizations and non-profit foundations appear to be working hard to reverse course. Perhaps no cultural or age cohort of grieving individuals garner the attention in the media nor the availability of funds as bereaved children and teens. Fortunately, along with the millions of dollars invested in recent years to provide services for bereaved children, clinical understandings of what helps and what does not has also emerged. This month’s
GriefPerspectives aims to briefly update readers’ knowledge to the current state of the field.
Comfort Zone Camps, one of the organizations involved in providing grief camps to children recently published a research survey in which they asserted, “Knowledge and awareness about grief – yielding better guidance for the formation of a caring response – are key. But to this point, there has been scant examination of precisely how grief is experienced by children, within families, and among the population at large, both immediately and over the long term†(Comfort Zone Camp, n.d., p. 2). This claim is both true and false. The truth in Comfort Zone Camp’s claim is that “Knowledge and awareness of grief…are key.†Bereaved youth greatly benefit when surviving parents, family members, neighbors, faith community members and educators are updated on best practices in supporting them.
Where the introduction to Comfort Zone Camp’s survey report errs however, is in suggesting that “there has been scant examination of precisely how grief is experienced by children…both immediately and over the long term.†The Harvard Child Bereavement Study was one early longitudinal research study that followed 125 bereaved children over two years following the death of a parent. Earliest analysis began emerging in the early 1990s with many published papers and at least two books over the 25 years since that study began (Silverman & Worden, 1992).
Just in the last ten years, several dozen research studies have been published examining child grief from a plethora of perspectives. Like the early Harvard study, some of these have been longitudinal studies in which a group of children was followed over two or more years after the death of a parent. Other studies have examined the immediate impact of involvement in a school-based or community-based bereavement support group. Different grief reactions have been examined according to the ages of the children, the causes of death of the parents and the level of “forewarning†available to the bereaved children. Is there more to be discovered? Of course there is. Is the evidence “scant†at this point? Not at all. Here are some consensus findings of clinical scholarship on youthful grieving.
Loss in Childhood Potentially Results in Wide-Ranging Effects.
Common sense points to the potential for complicated grief in children following the death of a parent, primary caregiver, sibling or other important person in the child’s life. Undoubtedly, this is one reason for the widespread belief—at least among upper middle class white North Americans—that death in a child’s life is automatic reason for referral to a therapist.
But common sense is not always based on fact and the widespread belief that all children and teens need therapy after a loss is one of those beliefs. One early study showed that about 1/5 of youth had significant behavior disturbances following a parent’s death while other studies have shown no differences in psychological disturbance between parentally-bereaved youth and non-bereaved controls (Dopp & Cain, 2012).
It should be noted that while perhaps only 20% meet criteria for clinical diagnostic concern, many others would benefit from supportive services. The major life disruption in the wake of parental death, for example, would be difficult for most youth to negotiate on their own while surviving parents and other caregivers are often woefully equipped to provide the needed emotional support, especially when reeling from major loss themselves.
Importance of Family Resources. Early research (Silverman and Worden, 1992; Worden, 1996) pointed to the importance of how a surviving parent functioned emotionally after spousal death. They suggested that lack of depression and positive emotional adjustment of a surviving parent was a highly predictive factor in positive emotional adjustment for bereaved children. Numerous studies conducted over the last 20 years at Arizona State University and bereavement centers testing their model demonstrate the clinical effectiveness of interventions targeted at helping both bereaved youths and their caregivers cope (Ayers, et.all, 2014; Sandler, et. al., 1996, 2010).
One notable dimension of the
Arizona State Family Bereavement Program is the depth of longitudinal data; recent published reports show the effectiveness of their program on bereavement outcomes for youth participants six years after families participated (Hagan, et.al., 2012). During the 12-session support group for bereaved youth and their caregivers (including four sessions with caregivers and youths together), the Arizona State model stresses the importance of “positive parenting.†The first three sessions of the caregivers’ support group specifically teach parents to foster emotional warmth and positive discipline, factors that have been found to be especially protective for bereaved children (Kwok, et.al., 2005).
An important takeaway for clinicians and volunteers working with bereaved children is to redouble efforts and outreach to the parents/caregivers of bereaved children. While it is true that some parents will not participate in a bereavement group along with their children, agencies must not give up the attempt to meaningfully incorporate parents into support services. The Arizona Family Bereavement Program is an excellent model of a program that has done this effectively (Ayers, et.al., 2014; Sandler, et.al. 1996).
Value of Grief Camps.
One of the fastest growing segments of the youth grief support landscape is the emergence of dedicated weekend and even week-long camps. The assumed value of “grief camping†emerges from the same sources that apprise the high value of an immersion in experiences away from the youths’ “routine.†Religious groups, the YMCA and many other organizations have promoted the value of immersion retreats for many years. This value is particularly clear on the parent page of
Comfort Zone Camps’ website: “Within the camp bubble, no one is (or feels) different about having a death in their family. The isolation is broken and turbo-bonding happens because everyone else has had a loss too†(Comfort Zone Camps, 2014).
There seems little doubt that children and teens involved in a grief camp experience are helped, and several research studies have confirmed that intuition (Farber & Sabatino, 2007; McClatchey, Vonk & Palardy, 2009; McClathey & Wimmer, 2012). Rarely does one hear a disparaging word about the camp experience. “Life changing†and “Amazing†are two terms commonly heard in interviews with youth participants, parents and volunteers engaged in the efforts.
What these research studies and anecdotal evaluation by participants demonstrate is how those who participate evaluate the effectiveness. What has not been studied is how the effectiveness of grief camps compares to community-based groups or to no intervention at all. In other words, what we must still learn is in what ways are the experiences of participation in a grief camp qualitatively better for participants than involvement in a community-based support group.
This is a particularly important point because of the vastly higher resource requirements needed to run a weekend or week-long camp for bereaved children. While bereaved families likely never pay the costs for a weekend bereavement camp, someone does. Those costs are shouldered by charitable grantors such as the
Jamie Moyer Foundation and
New York Life Foundation, as well as hundreds of local sponsors and donors. Moreover, the volunteer personnel needed to put on a grief camp is enormous with volunteer and paid staff actually exceeding the number of campers, at least in camp systems that assign a “buddy†to each camper.
The point is not to question whether grief camps do good work; we know they do. The point is to ask whether grief camps provide qualitatively better outcomes than community-based groups, in view of the funding and volunteer requirements needed. Far more research is needed to ascertain where the millions of dollars and hours invested annually in grief camps is the best possible use of those resources
Helpfulness of Professional Connection. With the rapidly-evolving world of youth bereavement, connection with colleagues is more important than ever.
PubMed, the quintessential database of research findings in health care, lists 607 journal articles on child and/or adolescent bereavement published in peer-reviewed journals in just the last five years. There is simply too much information being produced too quickly that one person could ever “keep up.†Below are a few of our favorite North American resources to help:
National Bereavement Resource Guide provides searchable database of hospices, camps, child bereavement centers and other resources across the United States and Canada. Hosted by the Moyer Foundation on their
website.
Dougy Center in Portland, Oregon is the first center in the United States to provide peer support groups for grieving children and was founded in 1982. The center was named for 13-year old Dougy Turno who died of an inoperable brain tumor at age 13. The Dougy Center’s legendary training programs include professionals from around the globe wanting to begin or enhance bereavement services for children. The “Grief Resources†section of the website includes activities for bereaved children, teens and families.
www.dougy.org.
National Alliance for Grieving Children is the largest association of people and organizations involved in bereavement care for children and adolescents. The organization’s symposium brings together professionals and volunteers from around the world every summer.
www.childrengrieve.org.
Bereavement care for children is a growing and rapidly-evolving field. Connection with colleagues paired with valid outcomes research is necessary to make sure that the best possible use is being made of resources to assure we are providing care for children and teens who will most benefit from the services they receive. In a word, we are hoping that bereavement services for children do not simply allow them to
survive the loss but actually to
thrive in the wake of the loss.
References:
Ayers, T.S., Wolkchi, S.A., Sandler, I.N., Twohey, J.L., Weyer, J.L., Padgett-Jones, S., Weiss, L., Cole, E. & Kriege, G. (2014). The family bereavement program: Description of a theory-based prevention program for parentally-bereaved children and adolescents.
Omega: Journal of Death & Dying, 68 (4), 293-314.
Comfort Zone Camp. (n.d.) Exploring grief’s landscape: A national research perspective. Comfort Zone Camps. Accessed from
https://www.comfortzonecamp.org
Farber, M.L.& Sabatino, C.A. (2007). A therapeutic summer weekend camp for grieving children: Supporting clinical practice through empirical evaluation.
Child and Adolescent Social Work Journal, 24, 385-402.
Hagan, M.J., Tein, J-Y., Sandler, I.N., Wolchk, S.A., Ayers, T.S., & Luecken, L.J. (2012). Strenthening effective parenting practices over the long-term: Effects of a preventive intervention for parentally bereaved families
. Journal of Clinical Child & Adolescent Psychology, 41 (2), 177-188. DOI: 10.1080/15374416.2012.651996
Kwok, O.-M., Haine, R.A., Sandler, I.N., Ayers, T.S., Wolchik, S.A., & Tein, J.-Y. (2005). Positive parenting as mediator of the relations between parental psychological distress and mental health problems of parentally bereaved children.
Journal of Clinical Child and Adolescent Psychology, 34, 260-271.
Sandler, I.N., Ayers, T.S., Twohey, J.L., Lutzke, J.R., Li, S., & Kriege, G. (1996).
Family bereavement program: Group leader intervention manual for child program. Tempe, AZ: Arizona State University Prevention Research Center.
Sandler, I.N., Ma, Y., Tein, J.-Y., Ayers, T.S., Wolchik, S., Kennedy, C., et. al. (2010) Long-term effects of the family bereavement program on multiple indicators of grief in parentally bereaved children and adolescents.
Journal of Consulting and Clinical Psychology, 78 (2), 131-143.
Silverman, P.R. & Worden, J.W. (1992). Children’s reactions in the early months after the death of a parent.
American Journal of Orthopsychiatry, 62 (1), 93-104.
Worden, J.W. (1996).
Children and grief: When parents die. New York: Guilford.
Author:
William G. (Bill) Hoy is an educator, counselor and author who has specialized in end-of-life and bereavement care for nearly 30 years. Dr. Hoy’s passion is equipping the next generation of physicians and other healthcare professionals through his research, writing and teaching responsibilities on the clinical faculty in Medical Humanities at Baylor University. His newest book is
Do Funerals Matter? The Purposes and Practices of Death Rituals in Global Perspective (Routledge, 2013).
The clinical scholars who conducted this research study include a physician (psychiatrist), clinical psychologist and graduate students at University of Pittsburgh School of Medicine and the University of Minnesota. As many readers of GriefPerspectives know, a longitudinal study examines the same group of research subjects multiple times over an extended period of time. Over a period of five years (months 9, 21, 33, and 62 after the parent’s death), this study examined the presence of psychiatric disorders (such as Major Depressive Disorder and Post-traumatic Stress Disorder), psychological characteristics and the context of the adolescents lives before and after the death. Earlier papers published by these authors suggested increased presence of psychiatric disorders in the parents who had died as compared to the families of non-bereaved control subjects.
