Camp Draws You Back Into Life Again : Exploring the Impact of a Therapeutic Recreation–Based Bereavement Camp for Families Who Have Lost a Child to Serious Illness

Abstract

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had participated in a three-camp cycle of the program over 12-month period, including a subgroup who had also attended a reunion camp. Interviews were also conducted with program staff. Thematic analysis generated key themes relating to the perceived impact which suggest that those engaged in this program perceived positive contributions associated with participation, including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning. This study highlights the areas of impact associated with engagement in a therapeutic recreation-based bereavement intervention, and the potential contribution of wider access to these programs for families whose child has died from serious illness.

Introduction

Multiple authors have addressed the impact of death in the family and the specific effects of the death of a child (Bosticco & Thompson 2005; Widger & Wilkins, 2004). Supporting families after such a life changing event is a challenge. Many interventions are available, including pharmacotherapy, professionally led counseling and psychotherapy, and self-help and peer support groups (Endo et al., 2015). Systems-oriented approaches that bring bereaved families together in a non-threatening environment may be helpful. Kramer and Sodickson (2002) describe the example of “a retreat” that brings together family members and hospital staff who cared for the sick child, providing workshops on grief and bereavement and a chance to remember the child who has died. Harter et al. (2005) believe that using narrative facilitates the management of uncertainty associated with bereavement. Telling the story of a child who died and listening to the stories of other bereaved parents appear to have a positive effect (Titus & De Souza, 2011).

A key context for the present study is the concept of therapeutic/supportive camps. Camps as a modality for supporting interventions and opportunities for personal development are common in North America. While they are predominantly used with groups of children facing challenges including chronic illness, disability and difficult family circumstances, they have also been used to help those who have been bereaved. In their review of published peer-reviewed studies on children’s bereavement camps, Clute and Kobayashi (2013) highlight that these camps typically share three main objectives, namely providing children with a safe place to share feelings about their losses; facilitating their grief work; and educating them about healthy ways to cope with their grief. Bachman (2013) points out that bereavement camps can normalize children’s grief, showing them that they are not alone in their loss and that they can trust and receive support from others. At a broader level, most bereavement camps have a significant outdoor component, and it is known that spending time in nature is often therapeutic, providing many benefits, including improved cognitive functioning (Berman et al., 2008).

The conceptual models underpinning bereavement camps vary. For example, Clute and Kobayashi (2013) highlight examples of programs that use models including the three-dimensional grief model and Worden and Wolfelt’s grief focused tasks. Some models are informed by trauma informed care principles, centering on helping children to recognize and respond to the trauma of losing someone close (McClatchey & Raven, 2017). Others are oriented toward promoting strength and resilience. In terms of the latter, Richardson et al. (2017) outline the use of a positive youth development (PYD) framework in two large networks of bereavement camps in America. The PYD perspective focuses on developing children’s psychosocial strengths and identifies five “Cs” that characterize optimal development: caring, character, competence, confidence, and connection (Lerner et al., 2003). They used their findings to develop a positive developmental settings observations checklist that can be used by bereavement camps to assess the extent to which they promote PYD. At an overall level, they highlighted the value of bereavement camps having a clearly articulated conceptual model underlying camp structure and activities so that the implementation and evaluation of the camp experience is aligned with the aims of the camp.

There is a limited but growing body of research evaluating bereavement camps with emerging evidence of their positive impact. In a quantitative study examining the influence of a 2-day grief camp on the psychological well-being of children who had experienced the death of an immediate family member, Hartwig and Marlow, (2021) reported that participation was associated with a significant positive effect on self-concept, a significant decrease in anxiety-related symptoms, and no significant changes in depression symptoms. In a qualitative study of a 4-day bereavement camp for children who had experienced the death a loved one, Fluegeman et al. (2013) concluded that the camp activities and the relationships formed there were effective in supporting children’s bereavement process. Additional studies suggest that participation in bereavement camps is associated with a reduction in childhood traumatic grief and posttraumatic stress symptoms in children following the death of a parent (McClatchey et al., 2009; McClatchey & Raven, 2017) and that they facilitate posttraumatic growth (Salinas, 2021).

The literature to date has focused primarily on bereavement camps for children. Despite Kramer and Sodickson’s (2002) earlier work documenting a weekend retreat for family members, there is limited literature on family-based camps. This is borne out in Clute and Kobayashi’s (2013) review of studies on the nature and effectiveness of bereavement camps. They noted that of the 187 entries they reviewed, only two camps involved family members in the actual camp experiences. There were diverse approaches to involvement of parents/guardians with camps typically seeking initial input and post-camp feedback from family members. They conclude that there is a need for engagement with families over time to counteract the enduring nature of grief, although supporting families as a unit in residential settings like camps will have resource implications.

The Present Study

Given the highlighted need for family-based bereavement supports, the present study examines the potential impact of a family camp. The context for the present study is a therapeutic recreation (TR)–based bereavement program for families who have lost a child to serious illness. Therapeutic recreation uses recreation and activity-based interventions to meet the needs of individuals with illnesses/disabling conditions, in order to promote psychological and physical health and well-being (Association of Therapeutic Recreation of America, n.d.). Hanlon et al. (2021) explored the model of this program from the perspective of staff and participating parents, suggesting that it aims to offer a non-judgmental setting where families with shared experiences of the death of a child can share their stories and experiences, which both normalizes the experience and creates a support network for them. They suggested that the findings support the potential value of TR-based bereavement interventions but highlighted the need for research to consider the impact of this type of program. This paper examines parents’ and staff perceptions of the impact of engagement with the program for families who have lost a child to serious illness.

Method

Research Context

The Barretstown bereavement program offers families a three-camp cycle of a 4-day/three-night camp, typically running over a weekend. The cycle runs over a 1-year period, at six-monthly intervals. At camp, families are assigned to individual activity groups, allowing them to spend time with others outside of their own family unit. Family members also attend bereavement sessions separately in child sessions, parent sessions or individual mother and father sessions. As part of the TR component, the day is scheduled through a range of activities and regular happenings, for example large group activities and mealtimes. TR-based activities draw on the core principles of challenge, success, reflect, and discover in an atmosphere of fun (Barretstown, nd). The overall objectives of the program are (i) to take a family away from a house where a death has taken place, (ii) to give them an opportunity to meet other bereaved families, (iii) to be together as a family and have fun. Following an interval of approximately 2 years (up to 5 years at the time of the study), families are invited to a reunion camp, the format of which is more flexible. The emphasis for the reunion camp is on reconnecting and fun.

Research Design

This paper is part of larger mixed-methods, action research study (Malekoff et al., 1996; Robson, 2002). Given the focus on the perceived impact of the program as reported by parents and staff, it draws on qualitative interviews conducted with staff and parents. Parent participants included those attending the three-camp cycle and a reunion camp. The study was reviewed and approved by the Research Ethics Committee in the host academic institution.

Participants

The parent participants were from families who had lost a child through serious illness and had experience of the bereavement program. Parents were recruited both through the annual three-camp cycle and a reunion camp. In total, six parents from three families (three female, three males) completed interviews at the end of the three-camp cycle, while an additional six parents attending the reunion camp (five female, one male) were interviewed. The children who had died (five female, five male) had an age range of 1–18 years. In the case of all but one, the death was the result of hematological/oncological conditions or mitochondrial disorders. Time since death at the point of interview was between one and 6 years.

Staff participants were sampled purposively, targeting those who worked closely with families. Key staff identified as possible participants included the Clinical Nurse Manager, Camp Director, Staff Support Person, as well as activity leaders and volunteers. The six staff who participated (four females, two males) included three current/recent staff members and three volunteers. Additional demographics are not included to ensure confidentiality.

Materials

Semi-structured interviews were carried out with participants, which included retrospective reflection on their experiences. Parent interviews were designed to explore the experience of attending camp and thoughts relating to the bereavement component and other activities. Parents were also asked for an overall view of their camp experience. Staff interviews explored the development and delivery of the program, with a focus on the delivery of both TR and bereavement components, as well as their views on how the families engaged with and experienced camp.

Data Analysis

Data from the interviews were analyzed using thematic analysis (Braun & Clarke, 2006). Repeated engagement with the transcribed data allowed the first author to identify initial codes semantically and inductively. Then candidate themes were developed based on a review of the codes and transcripts. One co-author shadowed this process with a sample of the data, with the aim to support the first author’s reflection on the data. The candidate themes from both authors were compared by the first author to reflect on different interpretations of the data and the process of naming themes. This paper isolates the themes relating to the potential impact of the camp as reported by parents and staff. Having analyzed the data from the different groups, these were reviewed to group findings into meaningful clusters.

Results

The findings presented here represent the clusters of themes that were identified across groups, with both convergent and divergent patterns noted.

Both parents and staff highlighted impacts associated with coping/adjustment to the loss of their child. Staff described how they can observe families as they cope and adjust to the loss as demonstrated in the comment, “I think it helps, it helps move them along, move them forward a little bit, em and maybe take a little bit, get a bit of outside perspective.” One father shared his belief that camp gave him and his wife permission to “do enjoyable things as a family and couple again.” This enjoyment was also observed among surviving children, this mother shared that her younger daughter who was attending camp with her told her of the fun she was having, and that attending camp had shown the family “how to have fun again without forgetting [child] and that others are going through the same.” One parent believed that camp allows campers to “alternate between the serious issues and have fun” adding in their open-ended questions that camp “reminded us that it’s okay to have fun.” Parents on the reunion camp echoed this, with one participant noting that “without realizing it helps you to enjoy things (music, dancing).” Two families shared that having the opportunity to focus on their child who died was a key factor for them at camp, reflecting this process of adjustment. The mother in Family 2 commented however, that her husband would have liked “more focus on the child who died” while the father in Family 3 shared that the family were “all happy to talk about [child].” Parents reported positive impact on their adjustment to grief from attending camp with some of the commentary relating to being able to “just be with your grief” and having “3 days to sit with it.” There was a need to do so because one Mother believed she “was blocking it out,” this she believes was because “we didn’t connect with our grief, we didn’t understand then, but we understand now.” This impact on adjustment was also evident among parents attending the reunion camp. “Camp draws you back into life again” one mother shared. Being at camp gives time for that to happen. The theme of time was also identified by one mother in her interview. She believed having time at camp was important as outside camp it is not always possible to give time to your grief; “outside your grief gets interrupted all the time.”

The impact of camp is also seen by staff within families themselves and the relationships within those families—“it brought them together again.” One mother valued the opportunity to get away as a family, adding that as a family they “are delighted it has worked out so well.” Camp gave the parents in Family 1 an opportunity for family and couple time which was a key feature for them. Parents also adjusted their relationship with surviving siblings. For example, parents reported that camp allowed them to be less “worrisome,” thus allowing their children to “do more adventurous things” which they enjoyed. This also links to parents’ feelings of safety as the mother from this family felt relaxed about her children because she knew “they were very well taken care of.” The mother from Family 2 also highlighted that camp allowed parents to “relax in terms of their children” which she viewed as relevant for herself and her husband. Communication within the family was also discussed, for example one mother who had expressed consider about communication with her daughter, family shared the fact of improved communication with her young daughter, as evident in her comment that her daughter “is more open and talks more freely about [deceased child].” This improved communication was also noted by parents attending the reunion camp. Three mothers spoke of the importance of camp’s effect on family communication. This is shown in the following comment of one mother; “we got to know about each other’s grief” and in doing so she recounted “it opened the gates for us to talk” which she viewed as a “positive family experience”, because after camp “we could let each other grieve,” moving from “putting on a show for each other (at home)” to “spending time with our grief on our own and together,” through which they discovered “mutual respect” for each other’s grief experience and expression.

These evolving relationships were not just among the surviving family members, and parents also talked about the developing relationship with the child who died. Family 1 shared how meeting other siblings had the effect of highlighting for their two surviving sons, the connection they had with the child who died, and this was identified as an impact for them of attending camp. For some parents taking part in the reunion camp, attendance reinforced connections with their deceased children who had attended camp during their illness. Returning to camp was bittersweet for these parents and all three related how their child had told them about the activities they were able to participate in and how they enjoyed them. This also constitutes a connection to their child who died, and one mother remembers her connection specifically in relation to the high ropes activity; “she told me so much about doing them.” Again, this was evident among parents attending the reunion camp. Among those parents interviewed, whose children who died who had been to camp, two parents felt a connection to those children at camp as highlighted by this mother’s comment; “her (daughter’s) journey brought us here (to camp) we were facing it without her when there was no hope. But going (to camp) [and now] renewed another type of hope for us, a different hope, we connected with her there.”

Meanwhile camp has and (and needs to have) according to another staff member, unique engagement with dads to allow it to work for them, “separating them into men [and] women makes it easier for men to open up in front of each other.” This was also noted by parents, who described camp as a positive place for fathers. The father from Family 2 believed that there is an expectation for fathers to cope (outside camp) and coming to camp can allow fathers to affirm that “they can cope.” However, the comment of the father from Family 1 above is more interesting and he believes (as does his wife) that camp allowed him to “be raw” after which he “felt stronger.” Among parents at the reunion camp the focus on fathers was also evident, “insight into [husband] grief.” One mother explained this when she stated, “talking to the other Dads helped me to understand what was going on for my husband.”

Another of the identified impacts of camp according to staff is the opportunity for families to avail of peer support. This is highlighted in the comment—“the bond in that group is so close in that group, when they are all cheering each other on you know it’s quite magical really.” Peer support is also noticeable outside activities and often in between them. This is seen in the following staff comment “in between activities parents always disappear down to the smoking shed or they disappear for a coffee.” Parents echoed this, with two participants identifying the experience of other parents creating a sense of belonging for them. The father from Family 1 elaborated on this with his comment that “knowing that everyone had a deep and genuine understanding of us and our common experience” was of great consequence to him with both parents adding that this helped to make their first camp a “very liberating one.” For both parents from Family 2, the commonality of experience of bereaved parents was fundamental. The opportunity to talk formally within the bereavement sessions and outside those sessions in informal chats was important as what was discussed within the formal bereavement sessions was one thing, but those conversations did not just stop there, as indicated by the comment above. This couple also highlighted that parents staying in contact between and after camp helped, and also commented on the friendliness of the parents at camp. Interestingly, this peer impact appeared to be bidirectional. For the mother in Family 2, camp gave her an opportunity to help others which allowed her to “be a strong friend and lend an ear as opposed to feeling you should be the one everyone feels sorry for.” She shared that “knowing there are others out there dealing with their own but similar pain” was significant.

Staff also shared that what was helpful for families was to be with people who allowed them to be normal without judging them. “Having some fun and laughing… no one is judging them.” A key aspect of this normalization the opportunity to share stories with others, with parents highlighting the opportunity to “talk about [child] or listen to others tell their stories.” Family 1 shared their gratification that while at camp, they did not feel judged noting “not having to worry about what others were thinking about what we said.” The quote in the above table gives details of what was important about that for them. Family 1 highlighted the camp being non-judgmental as a key feature for them which they shared in the comment above. Parents with experience of the reunion camp also highlighted this issue, with one mother highlighting the importance for her “not being judged,” in either her attempts to participate or her decisions not to. This normalization was also reported by parents attending the reunion camp, for example, one parents commented that they “discovered [we are] not alone, grief not unique to me, grieving a process we all deal differently with. Sharing benefits each other.” This fellowship is further represented in the following quote—“[I] heard stuff I thought I was mad for thinking; I had been having these thoughts for 8 months.” Parents attending the reunion camp focused on the benefits attendance at camp had in relation to three principal areas: reducing isolation, normalizing the experience of grief and freeing (able to be themselves). One mother found “discovering I was not alone” was for her “healing and uplifting.” Another mother identified that she discovered she “had a fear of sharing feelings” but discovered the benefits of sharing in her comment “sharing can ease the burden, help your coping mechanism.” Finding a way to understand grief’s assault and discovering common experiences of others can have a normalizing effect on the bereaved. This process was clearly helpful to one mother who commented that having an opportunity to be with others and share their experiences “highlighted I wasn’t going mad” while for another, parents recounting their own stories had a freeing effect on her and she commented “when another Mother said it (a mutual concern) I thought, this is why I came.”

There was also evidence that the impact of engagement with the program was not always positive. Parents describe the emotional exhaustion and drain that camp was for them which they discussed in the context of attending the three-camp cycle stating that “you can’t keep re-visiting grief.” However, seeing siblings at camp had highlighted for Family 1 the impact of loss on their surviving sons and a realization of that is shown in this quote—“they still miss [child] but are happier in general.”

Discussion

This paper examined parents’ and staff perceptions of the impact of engagement with a TR-based residential program for families who have lost a child to serious illness. The findings from this study suggest that those engaged in this program perceived positive contributions including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning.

The program being examined here focuses on the family as a unit and working to support them together. Both parents and staff commented on the implications the program had for family communication and connections, along with parents highlighting the impact on relationships within the family. While there are few studies that examine family-based programs (Clute & Kobayashi, 2013), for example, Kramer and Sodickson (2002) described a family-based retreat for families and staff, there is a more developed literature on the potential of camps for bereaved individuals (Lerner et al., 2003). However, the findings here would that TR-based family camp have the potential to impact on families effected by bereavement The literature shows that grief can be a significant challenge (Dias et al., 2017); however, for these families, attending camp seemed to help them become closer, including having fun as a family, spending time as a couple, and focus on siblings. Indeed, the program facilitates space for the whole family including the child who has died.

As well as bringing the family together to reconnect, the program was perceived to assist families in how they cope with the loss of the child and adjust to it. Meeting others, not feeling judged, having fun, while still remembering the child who died appears to be important elements of this contribution. The opportunity to meet other bereaved parents and siblings was an important part of this experience that was identified by both parents and staff. The importance of shared experience has been highlighted as a key factor for bereaved parents (Pohlkamp et al., 2021).

One notable finding from the present study, which was highlighted by both groups, was a particular impact for fathers. While fathers may be perceived as experiencing grief differently and using supports in different ways and indeed less than mothers, there is limited literature on fathers’ grief following the death of a child. Studies such as Aho et al. (2006) examine fathers’ experiences, and Dumont et al. (2020) have found fathers to have unique experiences following the death of a child from cancer. In this study, camp was described as positive for fathers, with the fathers’ groups separate to their partners/spouse supporting them to open up with each other and begin to address their grief.

Strengths and Limitations

Reflecting on the methods employed in the present study, a key limitation is the examination of a single program; however, given the common model of TR programming employed at Barretstown, we would be confident that the findings can be extrapolated to similar contexts. In addition, we recognize the limitations of the relatively small sample of participants. In contrast, a strength of the study is the inclusion of multiple perspectives on the issue of impact. Notwithstanding this, it is noted that the focus is on adults’ views, and the parameters of the study did not allow for self-report by surviving children in the family. The potential contribution of the study is enhanced by the rigorous approach taken to the analysis of the data, with the use of an established model of thematic analysis.

Implications and Conclusion

The findings of this study, while recognizing the limitations above, do have implications for supporting families who have lost a child to serious illness. The participants described a range of positive impacts that they experienced and observed (in the case of staff), though further research on family-based interventions is needed. However, in the absence of this research there are practical lessons for those supporting families. Bringing families together in a safe and structured environment, where there are opportunities for both family activities and more individual sessions, provides a context in which to examine their grieving with others going through a similar process, allowing similarities to be identified and shared. Given the absence of family-based programs, programs such as Barretstown’s bereavement camp fill a gap and offer a model for further development.