Abstract
Children with chronic heart disease (CHD) are often turned away from recreational summer overnight experiences because of complicated medical histories and medication regimens. The purpose of this qualitative study was to evaluate the psychosocial impact of a five-day overnight recreational experience for children with CHD and their parents. Thirty-six children with CHD between the age of 8 and 15 years and their parents participated in the study. Data were collected from the children using photovoice interviews. Parent data were collected using a post camp survey. Results included the following external outcome themes: inclusion in a peer group and the importance of friendship, fun, and safety. Internal or personal outcome themes included counselor as a role model, increased self-confidence, and the realization of life’s possibilities. Parent themes included increased child independence, increased child confidence, and child feelings of normalcy related to belonging to a peer group. Findings from this study can be used to encourage families of children with CHD to allow participation in a well-supervised overnight recreational experience. Such an experience can foster the child’s overall development, provide peer group support, and reduce parent anxiety about overnight separation from the child.
Introduction
With advancing technologies, many more children are living longer with significant cardiac conditions. Children with chronic heart diseases (CHDs) are at risk for alterations in psychosocial function, self-esteem, and independence because much of their childhood is interrupted with hospitalizations and frequent need for medical care. Because of complicated medication regimens and physical restrictions, many children with CHD are often unable to participate in typical childhood activities such as the overnight summer recreational camp experience. During these camp experiences, children stay overnight (without their parents) and participate in recreational and developmentally appropriate activities including games, sports, and outdoor activities. Quantitative evidence exists to support the possible benefits of a summer recreational experience, such as this, for children with chronic health conditions (Epstein et al., 2005). However, there are few qualitative studies that have explored child and parent perspectives regarding these experiences for children with cardiac or other chronic conditions (Epstein et al., 2005).
The authors sought to evaluate the psychosocial outcomes of a multiday recreational overnight experience for young people with CHD and their parent. A qualitative approach was used in order to increase the understanding of the meaning and impact of the experience for the child and family. Photovoice (Wang and Burris, 1994) interviews were used for data collection for the child participants, and postexperience survey questions were used to collect parent data.
Review of the literature
The literature was reviewed for international studies that evaluated the outcomes of recreational overnight camping experiences for young people with chronic medical conditions. Two particular studies were identified that specifically evaluated a cardiac overnight recreational camping experience for children with CHD (Moons et al., 2006; Simons et al., 2007). Findings from a summer cardiac camp held in the United States found decreased anxiety among children after the camping experience as well as a parental benefit in the way of reduced parental anxiety after the child’s camp attendance (Simons et al., 2007). The second study found a Belgium summer sports camp for children with CHD to be beneficial in improving the child’s self-esteem, general behavior, and subjective health status (Moons et al., 2006). Although both these studies provide quantitative evidence to support possible benefits to the child and parent when cardiac multiday overnight experiences are attended, no qualitative studies existed to corroborate the findings.
Evidence in the literature supports the benefits of overnight recreational camping experiences for children with other chronic health conditions such as diabetes, burns, asthma, epilepsy, and cancer. The majority of these camps were located in the United States and confirm positive effects for the child including improved self-esteem (Buckner et al., 2007; Meltzer and Rourke, 2005; Rimmer et al., 2007) as well as improved self-efficacy and role function (Buckner et al., 2007). Children attending oncology and diabetes camp experiences also identified benefits related to increased peer support (Cheung et al., 2006; Meltzer and Rourke, 2005). This peer support is important as children who are ill report feelings of an inability to share these experiences (Forsner et al., 2005). Kiernan et al. (2004) found a European therapeutic recreation camp for children with chronic illness plays an important role as a complimentary intervention for children with chronic illness. Additionally, Briery and Rabian (1999) found decreased anxiety and improvement in attitude toward illness as outcomes related to overnight camping experiences for children with chronic illness.
Overnight recreational camping experiences have parent benefits as well. Camp provides parent support in the form of overall improved psychological well-being for mothers through respite care (Meltzer and Johnson, 2004). This would be especially important for parents of children with CHD because evidence shows these parents exhibit increased anxiety and parental stress (Uzark and Jones, 2003; Vrijmoet-Wiersma et al., 2009). Therefore, camping and overnight experiences may provide benefit to the parent as well as their child with a chronic condition such as CHD.
Design and methods
A mixed methods quasi-experimental research design was used to evaluate the effects of a pediatric multiday, overnight recreational camping experience for young people with CHD and their parents. This article presents the qualitative research findings from the study which sought to address two specific aims (1) to understand what the camping experience means to the child and (2) to evaluate the psychosocial impact of camp on the child as well as the parent. Qualitative data were collected from the child participants using the photovoice interview process; parent data were collected using open-ended survey questions.
Photovoice stems from a process used to capture reality from an individual’s perspective through photographs (Ewald, 1985) in order to document what is meaningful to the person (Wang and Burris, 1994). The photographs are useful in telling a person’s story and evoke a different type of data (Plunkett et al., 2013). The potency of the data lies in the dialogue that comes during the discussion of the pictures with the participant (Plunkett et al., 2013). Children were provided disposable cameras at the start of camp and their pictures guided the qualitative interviews conducted at the end of camp.
Sample
Parent–child dyads were recruited from a five-day, overnight summer recreational camp for children with CHD in the Midwestern United States. During the experience, children stayed, without their parents, and shared a small cabin with several other campers and a camp counselor. Approximately 65 children between the age of 8 and 15 years participated in the overnight portion of this experience and were eligible for enrollment in the study. All children who attend have significant heart disease that required surgical intervention. Fifty parent–child dyads were enrolled in the study, and 36 completed the qualitative portion of the study. Fourteen children did not complete the interview portion of the study due to various reasons such as losing their cameras, going home early, or deciding not to participate in the interviews.
Procedure
The study received ethical and human subjects’ protection approval from two institutional review boards prior to the start of recruitment. Children and parents were informed of the study before arriving. Participation was voluntary. Written informed consent was obtained from the parents and assent obtained from the children. Children were then provided with disposable cameras and asked to take pictures of “what about the camp is special.” At the end of the third day of camp, the cameras were collected and the films developed. On day 4 of camp, the pictures were given back to the child for the interview. During the interview, children were asked to choose several pictures to talk about. An interview guide, developed by the researchers, was used and included the following questions: (1) “Tell me what is special about this picture?” and (2) “What does this picture say to you about the camp?” All interviews were digitally recorded and transcribed verbatim. The children were allowed to keep their pictures.
Qualitative data were collected from the parent after the child returned home from the camp experience. To elicit parent responses, the post camp survey asked “what differences do you see in your child as a result of attending this camp?” Written parent responses were transcribed and analyzed.
Data analysis
All qualitative data were analyzed for themes using qualitative description (Sandelowski, 2000). This form of qualitative descriptive analysis is not abstract or interpretive but rather of low inference and provides a straightforward description of phenomena. Analysis aimed to identify a range of responses and not necessarily the normative responses. Five researchers independently reviewed the data and came to consensus. In some transcripts, more than one theme was present in the interview.
Results
For the 36 child dyads who completed the qualitative portion of the study, there were 10–30 pictures each. The pictures included friends, roommates, counselors, and groups of children participating in an activity. The length of the interviews was short; most children ended them within five minutes. This resulted in a range of data; however, the richness and depth of the interviews were lacking.
Child themes
There were a range of themes identified in the child interview transcripts. The researchers categorized these themes into two main groups, external outcomes of the camp experience and internal or personal outcomes of the camp experience. External outcomes included ideas or themes pertaining to others. Internal outcomes were related to personal growth and development.
External outcomes
External outcome themes centered on concepts related to social interactions, feelings of community, and shared experiences among the children. These subthemes included importance of friendship, inclusion in a peer group, fun, and feelings of safety. Twenty-three children identified the importance of friendship as being special about their camp experience. Although many of the children only saw each other once a year at the camp, they describe stronger relationships with those peers than peers they saw on a more frequent basis. She was the one I called when I got cancer. I don’t know. Even though like we never see each other, I feel like she is one of my closest friends. Like, closer than the ones I have at school.
Inclusion in a peer group was also a consistent finding, with 20 of the children identifying the theme as being important to their camp experience. One child said, “What’s special about camp is that I get to have this wonderful experience in my life and I get to be around people that have the same heart condition as me.” Thirteen of the children described the camp experience as just being “fun.” This fun is summed up in one child’s description, “I would say it’s fun. You get to do a lot of activities. Being in nature you have fun. You have fun campers. You have fun counselors.” Many overnight recreational camp experiences are designed around themes or skill acquisition, but this camp was simply focused on enjoyment and having fun experiences. Last, 15 children identified feelings of safety while attending camp. One stated, “You shouldn’t be afraid because everybody is watching your back.” Another child talked about how she could not attend a “normal” camp because of her medical needs and felt “safe” and protected participating in this camp.
Internal or personal outcomes
Internal or personal outcomes were themes that captured personal growth, changes in self-esteem, and changes in character. Internal subthemes included the counselor as a role model, self-confidence, and the realization of life’s possibilities. Eleven children discussed the effect the counselors had on them in the form of acting as role models. Many teens have attended this camp for several years and have worked toward earning a spot as a future counselor. One child describes her excitement in changing roles stating, “I’m going to be a counselor next year. [I look forward to] the responsibility and the maturity of it. Knowing that they trust me and I get to hang out with the little kids.” Self-confidence was also identified as an internal outcome. One of the children replied, “I’ve never really done archery before, but it’s like … I didn’t know I could. When I first fired and stuff I missed a lot and didn’t think I could hit it at all, but I did!” The experience provided multiple activities that many of the children would not have an opportunity to experience because of their heart condition; this included zip-lining, float trips, archery, swimming, and fishing. The last internal theme identified was called “life’s possibilities.” Many children with CHD understand the seriousness of their health condition, and this overnight experience helps them realize that there is life beyond medical treatments and hospitalizations. [Camp] gets me really excited … because I only get to see these people about one week … every single year. And when you see them all again makes me so happy because I know that they are still making it through and they are surviving.
Seven children talked about the realization of these life possibilities. When asked about what a particular picture said about the camp, another said “you can be anything that you want to be and that even though we have heart problems, we can still have an awesome time.”
Parent themes
Three parent themes emerged from the written responses from the 36 parents who completed the post camp questionnaire. These comments fell into the following categories: increased child confidence, increased child independence, and child feelings of normalcy. Increased child confidence was identified by 17 parents. Every year my son comes home from camp he stands taller. He is more confident in himself and his abilities. He has activity limitations due to many heart surgeries and often feels left out of school activities. When he comes home after heart camp he can’t wait to tell us all the activities he was able to do and how well he did them.
Parents describe their children as becoming more outgoing, understanding more about their health, and feeling more self-assured in trying new activities after their camp experiences.
The second parent theme centered on increased child independence. Sixteen parents were able to describe increased self-sufficiency and autonomy. I believe she comes back with more self-confidence. Due to the fact mom and dad are not there to lean on and tell her what to do. She talks about making decisions and doing things for herself, no matter how small or minor.
Parents describe increased initiative that included participating more around the house to help with household chores and tasks. Another parent also described how the experience helped her let go and allow her son to become more independent.
Last, parents recognized their children returned home with a feeling of normalcy. Many of the children, because of their health condition or activity restrictions, do not feel as if they are like other children they interact with in their daily lives. She’s happy seeing old friends and meeting new ones. She’s happy to be around kids that are like her and that have many different abilities. They have no preconceived ideas about her, which helps boost her self-esteem. She needs people around her that don’t judge her.
Parents recognize the lifelong friendships that were made and the benefits of seeing their peers feeling well and outside of a health care setting.
Discussion
The results of this study provide an additional perspective about multiday, overnight recreational camp experiences for young people with CHD. When carefully examined, the qualitative findings support previous quantitative findings of the positive benefits of these experiences (Briery and Rabian, 1999; Moons et al., 2006; Rimmer et al., 2012; Simons et al., 2007). Additionally, congruence between parent viewpoint and child viewpoint of the benefits of the experience exists. Therefore, these findings both add to and validate the existing literature supporting developmental benefits of the childhood overnight experience for children with chronic illness.
The internal outcome themes from the study align with the quantitative findings in the literature. Children in the study identified increased self-confidence, and this corresponds with the increased self-efficacy, improved self-concept, and self-worth identified as outcomes from burn, asthma, and diabetes camps (Buckner et al., 2007; Cheung et al., 2006; Rimmer et al., 2007). Positive outcomes related to role function have also been found after attending camp experiences, including cardiac camp (Moons et al., 2006). This improvement in role function is similar to two subthemes, role modeling and life possibilities, discussed by the children in the study.
External outcomes, such as identity formation and an establishment of a community of peers, were outcomes identified in several of the quantitative camp studies (Cheung et al., 2006; Meltzer and Rourke, 2005; Rimmer et al., 2012). Identity formation and social acceptance (Meltzer and Rourke, 2005) align and are consistent with the theme identified as peer group inclusion. The children also identified friendships made as an important outcome which is similar to the concept, found in the literature, of improved social interactions (Cheung et al., 2006). These feelings of peer inclusion in a community are important because it has been reported that children who are ill feel they are unable to share their experiences with friends and family (Forsner et al., 2005). However, the idea of camp as being fun and the children’s feelings of safety are new findings in this body of literature; prior camp research has not evaluated these concepts.
Less information is available in the literature with regard to parent viewpoint of outcomes of overnight experiences for children with chronic health conditions. Therefore, the importance of these findings is in establishing a baseline for this data. Parent findings of confidence and normalcy are consistent with the child feelings of confidence and inclusion in the peer group. Therefore, the parent themes are helpful in validating the child-reported outcomes of overnight camping experiences. Parent identification of the theme related to increased child independence validates findings of increased self-efficacy found in the literature (Buckner et al., 2007). Additionally, overnight camping experiences may also offer direct benefits to parents. These benefits include a limited amount of respite time and support for parenting development. Parents who allow overnight recreational experiences for their child with chronic illness provide opportunities for children to establish independence in a safe environment where they are supported by peers with similar abilities and health challenges.
Lastly, overnight recreational experiences not only support the psychosocial needs of the children but may also provide a unique opportunity for health care providers. The physicians and nurses who volunteer to stay overnight with the children rarely have the chance to provide care outside of an acute care setting. The camp experience, therefore, not only provided an opportunity to see the children in a more natural childhood setting but also offered them a chance to provide psychosocial and developmental care to the population of children they serve.
Limitations
Although the study fills an important gap in the literature and supports previous study findings, there are some limitations to consider. First, the children who attend this camp have a high rate of return to it each summer. Therefore, it is difficult to establish if these results are the result of repeated experiences. Also, data were collected during and within a week of the camp experience. Follow-up several months after would be beneficial to evaluate the longitudinal effects of the experience. Last, conducting a study using a comparison group of children without a chronic health condition would be helpful in order to compare the results and establish differences among the groups.
Implications for practice
Overall, this study adds to the body of literature that supports the consensus that camping experiences are beneficial for children with a chronic condition, such as CHD. The literature also suggests that health care providers use a holistic approach in providing care to this population of children; however, that can be challenging in the acute care setting (Lawoko, 2007). Overnight recreational camp experiences may be one avenue for health care providers to deliver this critical psychosocial support for children with CHD. Additionally, results from this study can be used to encourage families of children with CHD to allow participation in a well-supervised overnight camp experience. Such an experience can foster the child’s overall development, provide peer group support, and reduce parent anxiety about overnight separation from the child. Future research should focus on longitudinal follow-up after camping experiences in order to assess long-term effectiveness and evaluation of personal parent benefits of camping experiences.
Footnotes
Funding
This research was funded by St. Louis Children’s Hospital Faculty–Staff Collaborative Research Grant.