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Sattoe et al. BMC Nephrology 2013, 14:279http://www.biomedcentral.com/1471-2369/14/279 Effective peer-to-peer support for young peoplewith end-stage renal disease: a mixed methodsevaluation of Camp COOL Jane NT Sattoe1,2*, Susan Jedeloo1 and AnneLoes van Staa1,2 Background: The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD)develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as ‘buddies')organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. Theattendees are young people who still have to transfer to adult care. This study aimed to explore the effects of thisspecific form of peer-to-peer support on the self-management of young people (16–25 years) with ESRD whoparticipated in Camp COOL (CC) (hereafter referred to as ‘participants').
Methods: A mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff,participants, and healthcare professionals were conducted. These were combined with retrospective and pre-postsurveys among participants (n = 62), and observations during two camp weeks.
Results: Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feelingcapable of being more responsible and open towards others, and daring to stand up for yourself. According toparticipants, being a buddy or having one positively affected them. Self-efficacy of attendees and independenceof buddies increased, while attendees' sense of social inclusion decreased (measured as domains of health-relatedquality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader.
Conclusions: Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD.
Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddieswas much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for youngadult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Togetherwith nephrologists in adult care, they could take on a role in selecting buddies.
autonomy and self-advocacy development Young Young people with end-stage renal disease (ESRD) often people with ESRD are known to be a vulnerable and achieve fewer developmental milestones and lag behind unique group . They are at risk for cognitive impair- in development compared to both healthy peers and ments, low educational attainment, and psychosocial and peers with other chronic conditions [In general, the psychiatric problems [Psychosocial development transition into adulthood is especially challenging for is closely linked to health-related quality of life and adolescents with chronic conditions, because they have social participation []. Young adults who reached fewer to balance the usual developmental tasks with the medical developmental milestones in childhood and adolescence challenges presented by the chronic condition ]. Also, therefore experienced greater impact of their condition negative family exchanges like overprotection may hamper on their daily lives ], while sound psychosocial develop-ment in early life was associated with successful socialparticipation (e.g. ).
* Correspondence: 1Centre of Expertise Innovations in Care, Rotterdam University, P.O. Box Since adolescence involves a shift from parental influ- 25035, 3001 HA Rotterdam, the Netherlands ences to peer relationships and peers can provide 2Institute of Health Policy & Management, Erasmus University Rotterdam, psychosocial support and influence treatment- P.O. Box 1738, 3000 DR Rotterdam, the Netherlands 2013 Sattoe et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedicationwaiver applies to the data made available in this article, unless otherwisestated.
Sattoe et al. BMC Nephrology 2013, 14:279 related behaviours creating opportunities for young Table 1 Guidelines for Reporting of A Mixed Methods people with chronic conditions to support each other is gaining popularity [One popular method is the Criteria description organisation of recreation camps. There is some evidence Describe the design in terms of the purpose, priority and that participation in recreation camps has psychosocial sequence of methods benefits for children with chronic conditions. Various Describe the justification for using a mixed methods approach studies reported increased health-related quality of life to the research question [improved self-esteem, self-confidence, self-image Describe each method in terms of sampling, data collection or self-efficacy and sense of mastery , positive attitudes towards illness ], increased disease-specific Describe where integration has occurred, how it has occurred knowledge ], and fostered independence, respon- and who has participated in it sibility or self-management skills Yet, most Describe any limitation of one method associated with thepresence of the other method studies have samples with an age range of 10–16 yearson average [, and further exploration of the benefits Describe any insights gained from mixing or integrating methods of participating in recreation camps for an older age *From: O'Cathain et al. 2008 ].
group is needed ,. Furthermore, relatively little isknown about these camps' working mechanisms ,], weeks. Furthermore, different perspectives were explored and there is a lack of qualitative or mixed-methods by including healthcare professionals, buddies, attendees, studies into participant experiences and the effects of and the initiators/staff of CC in the study sample. The recreational camping for young people with chronic qualitative component of our study adheres to the qualita- tive research review guidelines (RATS) In the Netherlands, young people with ESRD can attend More specifically, included in the study sample were: 1) a yearly, nationwide one-week camp (Camp COOL) since all young people with ESRD that had once participated in 2007. Funded by the Dutch Kidney Foundation and CC during 2007–2010 (n = 52) or were visiting the camp private sponsors, the camp is free of charge for the young in 2011 and/or 2012 (n = 38); 2) all paediatric nephrology people. Paediatric healthcare professionals throughout the professionals in the country that referred to CC (n = 5); country refer patients to the camp. A unique feature is and 3) the initiators/staff of CC (n = 4). The staff consisted that fellow patients already treated in adult care (hereafter of adults that stayed at the camp to assist the buddies in called ‘buddies') organise the day-to-day program, run case they encountered problems they could not solve the camp and counsel the attendees, next to actively themselves. They kept themselves at the background and participating in the activities. Attendees are young people let the buddies run the camp.
who still have to transfer to adult care. Only one other The study was conducted in two consecutive phases, study reports on a more active role of adolescents with presented in Table Participants were assured of confi- rheumatic disorders in organising and designing a camp- dentiality and data were processed anonymously. They ing program, but this more active role was not evaluated received written information about the study and par- []. Our study aimed to explore the effects of this specific ticipants aged 12 years or older gave informed consent.
peer-to-peer support on self-management of all young Parents also provided informed consent for minors people (16–25 years) with ESRD who participated in (<18 years). There were separate parts on the consent Camp COOL (CC) (hereafter called ‘participants').
form for each of the study components (i.e. question-naires, interviews and observations). The Medical Ethics Committee of the Erasmus MC University Medical Center Study design & ethics approved all study procedures.
Epstein and colleagues advocated the use of MixedMethods Research (MMR) to evaluate the effects of Phase 1: gaining insight into Camp COOL therapeutic camping for chronically ill, because the use The aims of phase 1 were: of complementary quantitative and qualitative designscould lead to more enriched findings We used this 1) To gain insight into the underlying principles of CC method not only for this reason, but also because MMR as an intervention for young people with ESRD, and was expected to contribute to the comprehensiveness the context in which it takes place. These insights and validity of the study The guidelines for were also used to develop our study materials for Good Reporting of A Mixed Methods Study (GRAMMS) the evaluation of CC.
were followed see Table . Quantitative measures such 2) To pre-test our questionnaire and to gather as questionnaires were combined with semi-structured preliminary information about the effects CC may interviews and participant observations during the camp have on participants.
Sattoe et al. BMC Nephrology 2013, 14:279 Table 2 Mixed methods research Camp COOL Study sample: Study phases: Young people that Initiators or staff Nephrology professionals that participated in Camp COOL refer patients to Camp COOL Phase 1: Gaining insight into Semi-structured interviews (n=2) Retrospective questionnaire(n=24, response: 46%) Phase 2: Evaluation of Camp September 2011, and October 2012 COOL in 2011 and 2012 Participant observations during camp September 2011, and October 2012 Pre-post questionnaires(n=36, response: 95%) December 2011/2012, and January 2012/2013 Semi-structured interviewsafter camp (n=10) demographic and disease-related characteristics [], and First, semi-structured interviews were held with the ori- the instruments used to measure general and disease- ginal initiators of CC (n = 2), with nephrology professionals related self-efficacy Health-related Quality of referring patients to CC (n = 3), and with a buddy (n = 1) Life and social participation [including their and an attendee (n = 1) who had participated in the psychometrics are presented in Table The questions previous camps (2007–2010). All original initiators and specifically developed for this study and considering healthcare professionals were invited to participate, and the influence of Camp COOL on the participants are were approached through e-mail. Initiators recruited presented in Additional file former participants in this phase of the study.
For all interviews, topic guides were used. Professionals Phase 2: evaluation of Camp COOL in 2011 and 2012 reflected on what they knew about CC, their rationale The aims of phase 2 were: for referring patients to CC, the criteria used for selectingpatients for CC, and their expectations considering 1) To gain insight into the effect of peer-to-peer the camp's impact on both buddies and attendees. The support as working mechanism of CC.
initiators explained their aims for organizing CC, the 2) To study the effects participating in CC has on concepts and ideas integrated in the program, and what self-management of young people with ESRD.
they considered to be the camp's impact on buddies andattendees. Former participants reflected on their experi- Prior to the camp, participants of the camp in 2011 and ences during CC and on the benefits.
2012 received a letter informing them about the researchand asking for their consent, and in case of minors for parental consent as well. They filled out an informed Information from the semi-structured interviews with consent form, agreeing to all research methods.
the initiators and healthcare professionals served as abasis for the retrospective questionnaire. A pilot version was tested in the interviews with the buddy and the at- Participant observations were conducted to gain insight tendee. Subsequently, all former participants (n = 52) into the establishment of peer-to-peer support during were contacted by the initiators who sent out informa- CC. Participants received information before the camp tion letters and questionnaires by mail. Participants re- and provided consent. Two researchers (JS & SJ) and four ceived three reminders: by mail (four weeks after initial trained nursing and physical therapy students observed invitation), by e-mail (two weeks after first reminder), participants during CC 2011 and CC 2012 and were intro- and by phone (two weeks after the second reminder).
duced during the first activity of CC. They took field Respondents were entered in a lottery to win one out of notes and filled out structured forms about participants' four vouchers worth €25. The questionnaire contained attitudes and behaviour, and topics discussed. Special questions on participants' background, self-management attention was paid to buddy-attendee interaction. Other and participation and Camp COOL. The measured socio- broad themes on the forms were: general description of Table 3 Content and psychometrics of the measurement instruments (questionnaire) Measured characteristics Measurement instrument Answer categories or scales Educational level 0 years/1–5 years/6–12 years/13–16 years Limitations in mobility Medical outcomes Study (MOS) 6-Items 3-point scale: 1 = severely limited/2 = somewhat Short Form Health Survey [] limited/3 = not limited at all Self-management and social General self-efficacy 10-item General Self-Efficacy Scale [] 4-point Likert scale: 1 = not right/2 = hardly right/ 3 = somewhat right/4 = totally right 16-item2 On Your Own Feet Self-Efficacy 4-point Likert scale:1 = yes certainly/2 = yes Scale (OYOF-SES) probably/3 = no probably not/4 = no, definitely not Health-related quality of life 37-item European DISABKIDS condition 5-point Likert scale: 1 = often/2 = quite often/ generic questionnaire (DCGM-37) [] with 3 = sometimes/4 = almost never/5 = never six domains: independence (I), social inclusion(SI), social exclusion (SE), emotion (E), physical (P), medication (M); and a general score (range: 0–100) Social participation Rotterdam Transition Profile (RTP) [] with seven Four transition (to adulthood) phases (0–3)3 life areas: school/work, finances, (independent) living,(intimate) relationships, leisure, and mobility Influence of living with the condition 10 items Effects of CC Scale See Additional file .
5-point Likert scale: 1 = completely disagree/2 = disagree/ 3 = somewhat agree/4 = agree/5 = completely agree Value of peer-to-peer (i.e. buddy-to- Value of peer-to-peer support (2 items for buddies 5-point Likert scale: 1 = completely disagree/2 = disagree/ attendee) support and 2 items for attendees) See Additional file .
3 = somewhat agree/4 = agree/5 = completely agree Overall liking score for CC 10-point Visual Analogue Scale: 1 = lowest possible liking/10 = highest possible liking 1α = Cronbach's Alpha.
2This instrument originally consists of 17 items assigned to knowledge, coping and skills for hospital consultations. However, one item about expecting to be ready for the transfer to adult care was deleted, because itdid not apply to our full sample.
3Young persons in phases 0 and 1 are still fully dependent on adults, e.g. parents, or display typical child behaviour. Young persons in phase 2 experiment with adult behaviour or orient to it. Phase 3 refers to full autonomy in participation. Because we were interested in successful transition to adulthood, the phases were dichotomised as follows: 0 = phases 0–2, 1 = phase 3.
4Construct validity was established in a previous study [ Sattoe et al. BMC Nephrology 2013, 14:279 the event (e.g. description of the setting and format), to participate', ‘value of participating', ‘programme ele- topics addressed during the event, interaction between ments', ‘buddies', and ‘becoming independent'.
participants, and other notable happenings. Observers SPSS 20.0 (SPSS Inc., Chicago, IL) was used for all the wrote down their findings per theme in narratives.
statistical analyses. Means, standard deviations and propor- Some activities required the group to be split into tions were used for descriptive analyses. Non-parametric smaller groups. Therefore, to be able to observe the same tests were used for pre-post analyses. Finally, effect sizes activity in different groups, three to four observers were were estimated for significant differences (Cohen's d).
present at CC 2011 and CC 2012. At least one of theresearchers teamed up with the trained students during Validation & integration observations, and the observers were present at every Method triangulation and peer-review enhanced valid- activity or event.
ation for the qualitative findings. Two researchers (JS & SJ)discussed all preliminary analyses of the observations and interviews; the final analyses were presented to and Two staff persons were interviewed at the campsite in discussed with the supervisor (AvS) and the members of 2011 and 2012. They talked about the daily programme the advisory board. Validation for the quantitative findings of CC and about the perceived impact of CC on buddies was enhanced through pre-testing the questionnaire with and attendees. They were selected because they were one buddy and one attendee. None of the respondents the only staff persons not interviewed during phase 1.
had difficulties in answering the questions, but they had All participants had been requested to indicate their some useful suggestions considering the formulation of willingness to participate in semi-structured interviews questions. Filling out the questionnaire took approxi- performed 4–12 weeks after the camp. Ten participants mately 20 minutes.
who attended CC 2011 or CC 2012 (31.3%) were willing Findings from the MMR were integrated in different to participate and were subsequently interviewed. They ways. First, the qualitative findings from Phase 1 were reflected on their experiences, the different elements of summarised and used to develop the questionnaires. Also, the program, the buddy-to-attendee support, and the statistical comparison of first phase quantitative results benefits of participating in CC.
with the second phase quantitative results led to integra-tion. Final integration was achieved through comparingthe qualitative and quantitative findings of both phases, Pre-post questionnaires and drafting this manuscript.
All participants of the camps organised in 2011 or 2012(n = 38), filled out pre-post questionnaires containing questions similar to the ones in the retrospective ques- First, we present the final study samples. Then, the origins tionnaire. In the pre-questionnaire, administered at camp and goals of CC are presented to enhance understanding start (T0), the questions considering the camp experiences of CC as intervention for young people with ESRD. This had been rephrased to reflect expectations. The post- section is based on the results from the interviews with questionnaire, administered at camp closure (T1), asked initiators and healthcare professionals. Next, the results after outcomes of these expectations.
from the observations, interviews with all three parties,and questionnaires are presented. The findings are inte- grated in the last paragraph.
Interviews were all digitally recorded and transcribed adverbatim. The interview transcripts and the observation forms were imported into separate files in the qualitative In the two phases, 19 respondents were interviewed:4 software package Atlas.ti 6.2. (). Thematic initiators/staff, 3 healthcareprofessionals, 6 buddies, and analysis was applied on both data sets, and data from 6 attendees (Table Buddies were on average 21 years different parties (buddies versus attendees, and participants old (range: 18–25 years), while for attendees this was versus initiators/staff) were constantly compared. In Atlas.
17 years (range: 16–18 years).
ti, initial codes (themes) were formulated on the basis of In Phase 1, 24 out of 52 former participants (46%) the interview guides and the observation form. These filled out the retrospective questionnaire. Most of them were complemented with newly formed codes. Broad were girls, and had received kidney transplantation.
themes were derived from the interview guide, while Mean age of the respondents was 20.8 (±3.2) years, and subthemes were empirically derived from the data.
half of them had been attendees only; while the other Themes for instance considered ‘going to CC, ‘at the half had been both attendees and buddies. Background camp', ‘peer-support' and ‘CC and transition to adult- and self-management characteristics are summarised in hood/adult care'. Subthemes were for example ‘reasons Sattoe et al. BMC Nephrology 2013, 14:279 Table 4 Characteristics of interviewed respondents Type of respondent Attendance at camp COOL Initiator (Parent) Initiator (Paediatric nephrologist) Paediatric nephrologist 1 x buddy, 1 x attendant 3 x buddy, 2 x attendant In Phase 2, 38 participants of CC in 2011 and/or 2012 independent living with ESRD, i.e. the transition to were asked to fill out pre and post questionnaires. Four adult care and adulthood). "Self-management is the main attended both camps and filled out the questionnaires theme of Camp COOL. It […] requires self-confidence, self- twice. Only the data from 2011 were used for the analysis, efficacy, and self-consciousness" (A). Next to this, know- because this was their first experience with CC. Two ledge of the disease and various skills are important for respondents did not fill out the post questionnaire, because they had left to undergo treatment. Consequently, Acquiring self-management skills was facilitated by the pre-post sample consisted of 32 (84%) young persons buddy-to-attendee support. This implied that buddies – with ESRD. Most of them were boys, and had kidney fellow patients already gone through the transition to transplantation. Mean age was 19.1 (±2.4) years. Back- adulthood and adult care – lead the day-to-day program, ground and self-management characteristics are sum- run the camp and counsel the attendees who have not marised in Table moved on to adult care yet. Initiator A explained: "They Participants were observed during CC 2011 and 2012; manage the week. We are present, but are invisible. We in total on 8 out of 10 days. The programme elements are only available if there is really something they need to observed are presented in Table know. But even then, we always let them come up withtheir own solutions first and ask them what they think Camp COOL: the intervention is needed to solve a problem." The concept of buddy-to- The rationale behind Camp COOL attendee support presupposes that buddies will share their One of the initiators had heard about a ‘transition camp' lived experiences, allowing for transfer of experiential in the UK and felt this approach might be helpful for knowledge. Also, it is hoped that buddies become role young people with ESRD in the Netherlands as well. He models. Buddies are not formally selected or trained, but discussed his idea with parents and fellow professionals, receive some coaching during the two days before start of and together they explored the specific needs of young the actual camp. Also, buddies have a ‘buddy meeting' people with ESRD. Realising that acquiring autonomy every day to discuss anything that requires attention. Initi- and independence was especially hard for these young ators select former attendees and ask them to become people, they widened the scope of the camp (particularly buddies, but apply no explicit selection criteria.
preparing for transition from paediatric to adult care Furthermore, the programme elements support building and self-care) to a self-management camp (aimed at general competencies, e.g. a ‘how to present yourself ' Sattoe et al. BMC Nephrology 2013, 14:279 Table 5 Characteristics of questionnaire respondents: n (%) or mean (±SD) Age (at time of questionnaire) -] Educational level (high) Peritoneal dialysis Kidney transplant Limitations in mobility General self-efficacy Knowledge domain Skills for hospital consultations [-] Independence domain Social inclusion domain Social exclusion domain Medication domain Autonomy in social participation (yes independent) *R = retrospective; T0 = pre-camp; T1 = post-camp.
Theoretical range.
**Wilcoxon Signed Ranks Test (paired) for differences between T0 en T1 measurements, and Cohen's d for effect sizes.
Missing values: 1n = 8, 2n = 1, 3n = 2, 4n = 4, 5n = 13, 6n = 12, 7n = 3, 8n = 1, 9n = 22, 10n = 21, 11n = 9.
Sattoe et al. BMC Nephrology 2013, 14:279 Table 6 Program elements Camp COOL 2011 and 2012 Workshop ‘Present yourself' Theater performance by professional artists on transition to adulthood(in general) Workshop ‘Present yourself' Art workshop, creating a self-portrait Movie making workshop & self-made movie about Rating Camp COOL Drumming workshop Dancing (Zumba) workshop) Acting workshop & self-made talk show about transition, independence,and living on your own workshop. There are no activities focussed on the disease; aspects of ESRD. Side effects of medication were discussed, attendees will not be lectured about side effects, for in particular Prednisone. Insomnia, feeling hungry, and a example. Although buddies lead the day-to-day pro- "fat head" were often mentioned as annoying side effects.
gram, in 2011 the initiators/staff had pre-selected the Participants during CC 2011 even came up with a story programme elements. However, in 2012, the buddies had about a "Prednisone park" when they presented a show as more to say about the programme by selecting specific one of the activities. Still, participants joked a lot about side elements, presented in Table . This was done as a first effects. Other medical topics were transplantation, diets, step to evolve the buddy role, because it was noticed in treatment frequency, and treatment options. Social topics the past years that buddies benefited from this role. In addressed were school, work, sports, risky behaviours both years, a hospital social worker and an initiator like smoking, drinking or doing drugs, but also dealing were present.
with ESRD in social life. A major issue was the influenceof ESRD and its treatment on school carrier, i.e. either or The referring role of healthcare professionals not being enrolled in special education and whether they C (nephrologist) defined her referring role as being a felt pushed by their environment to do so. Another hot "counsellor" who "recruits young people" with ESRD. Fur- topic was ‘how to become independent from parents'.
thermore she mentioned that professionals may be asked Participants during CC 2012 presented this in their to take over the "background" role of the initiators during evening show.
the camp, "only interfering when needed".
During certain activities the buddy role was more All professionals agreed that age was the major selection prominent, for instance during the ‘Present yourself ' criterion; 16 years or older in general. A social worker workshop and the acting workshop. Buddies encouraged added that she also considers impact of the condition on the attendees to actively participate in workshops. During the person's daily life: "Especially those who daily take the moviemaking workshop, one of the buddies urged medication and are on a diet. Or those who do not know attendees to come up with ideas: "Hello, listen, I'm talking how to deal with the condition at school, and those who all the time here. You guys could come up with something have yet to learn to become independent" (D).
as well!" During free time, the buddy role varied fromtelling their attendees it was their turn to do the dishes Observations during the camp to reminding them of their diets.
Notably the first-timers needed to get acquainted with The buddy role was less prominent in the art work- the new people they met and with the camp's routine.
shop and preparations for the evening show. Here, the Buddies helped breaking the ice. They started conversa- buddies seemed to adopt a more passive role and let the tions with attendees, encouraged attendees to talk with attendees figure things out on their own. In the prepara- one another, and told a lot about themselves to create an tions for the evening show, they only offered ideas on how open atmosphere. There was an observable difference the selected themes should be presented. Consequently, between first-timers and attendees who had joined previous the show was largely the work of the attendees.
camps. The latter were less hesitant to interact with others,and less often relied on their buddies. Buddies proactively Interviews: the value of Camp COOL engaged the new attendees in conversations. As the first All interviewed parties acknowledged that young people day progressed, the ice had melted, and there was a warm with ESRD needed to be supported in their development and relaxed atmosphere.
of self-management. Professionals mostly emphasised that Participants talked a lot with each other during activities young people with ESRD in adult care tended to show lack and free time, a great deal about medical and social of independence, and initiators held the opinion they Sattoe et al. BMC Nephrology 2013, 14:279 should actively develop autonomy and readiness for adult for them to "be more daring" and "open towards others".
care and adult life. A former buddy (F) reasoned that adult The healthcare professionals, however, were less certain care requires certain skills that are not necessarily trained about the exact effects of CC. "I cannot imagine it having for in paediatric care: "You have to be attentive yourself. In no effects at all. Still, I can't specifically point out what paediatric care they arranged everything for you […]. You the effects are" (E). Their reluctance was related to the must ensure that they won't just let you be. This happens.
question whether or not any positive effects were directly Other buddies had the same experience." attributable to the camp.
Buddies and attendees had different reasons to partici- pate in CC. While buddies thought of CC as a place to Interviews: buddy-to-attendee support meet the others again and to enjoy themselves, attendees The buddy is an important part of CC, and was much in general had to be encouraged by their parents to join.
appreciated. The attendees mostly viewed the buddy as a "At first, I wasn't really up for it. My father signed me companion who helped them through the first day and up. But I did not regret going to Camp COOL" (M).
who guided the activities. "I think it is important to have The most valued aspect of CC was peer support.
a buddy when you first get there. That he or she helps Participants did not only appreciate the informative or you to get used to the new environment. I had a very instructional character of the peer support, but also experienced buddy, who told me a lot" (L, attendee). They found that meeting others "who have been through the appreciated that they could learn from their buddies, same" helped them to "put" themselves and their ESRD because: "A buddy is more experienced [in living with "into perspective". J (buddy) explained: "Realising that you ESRD]. So, it's a good thing that he is here. […] A doctor are not the only one, or even that your own condition is not can tell you all of it, but doesn't experience things. A as bad as that of others. For instance, I saw that I was not buddy does" (Q, attendee).
the only one that got tired easily during sports." Social The initiators noticed that buddy-to-attendee support comparison seems to be an inherent part of peer activities, did not only benefit attendees, but that buddies themselves as mentioned by K (attendee): "Well, having heard stories grew wiser from managing the camp too. "The responsibility of others, I feel lucky that things aren't going that bad for for the camp and the attendees makes them grow" (B).
me. Some said they have been on dialysis for years or are Buddies in general indeed described having "responsibility" still waiting for kidney transplantation. Yes, I think I am as the most important aspect of their role as and lucky that I do not have to wait anymore." Young people found this role to be threefold: 1) looking after others, emphasised that contacts with others in their social 2) giving advice to others, and 3) running the program.
network differed from contacts with peers with ESRD: The supervising role relates to monitoring medical regimen "Other ESRD patients will understand your condition adherence, but also seeing to it that the attendee feels better than your own family or friends" (L). N gave well and enjoys the activities. "Especially the medication, specific examples: "The freedom to take your medication she tried to hold off taking them. So, I tried to convince her without anyone asking you why you have to do this.
it's crucial to take it on time" (N, buddy). Buddy O said And, that you do not have to hide a shunt from the this about her attendee: "You almost had to feed her. I really had to take care she ate enough; I sort of had to force Participants particularly appreciated the informative character of peer support. The sharing of experiences The advisor role revolves around listening to the at- gave them new information on dealing with healthcare tendees' stories and being able to advise them if asked to.
professionals, treatment options, and possible side effects.
Questions often concerned living with ESRD but could be M (attendee) said: "I didn't even know that I had side medically oriented as well. Buddy O, for example, was effects. […] I sat down and said I was hungry again.
asked about types of dialysis: "I did both types of dialysis And they said ‘Prednisone'. I asked: ‘Prednisone?!' And and therefore could tell them about the differences and they said, yes, [being hungry] is one of the side effects of consequences of choosing one method over the other" (O).
Prednisone. I went like, side effects?!" Young people also Finally, smooth running of the programme is the responsi- learned more about generic issues of living with ESRD.
bility of the buddies in their leader role: "We as buddies P (buddy) mentioned living independently as an example: take care of the daily camping program, we lead the "I learned something about being independent, because we talked about living on your own and how to arrange for All buddies mentioned that being a buddy was fruitful that to happen." Other issues mentioned were school, for them: they learned a lot and it increased their self- work, and dealing with friends.
confidence. However, some felt insecure at times. Buddy Finally, buddies and attendees ascertained that the N said: "I found that difficult, because I could under- programme elements had helped them to develop more stand her feelings [of being misunderstood by family and "self-confidence" and "perseverance", and had made it easier friends], and of course I can advise her, but it made me Sattoe et al. BMC Nephrology 2013, 14:279 feel like a psychologist and that is not my task". This participants in the retrospective group was 8.0 (±1.2) goes to show that the buddy role is a challenging one.
on a scale from 1 to 10, versus 8.9 (±.82) by participants in Buddy O had come to realise this: "I do not get angry the 2011–2012 group. Respondents in the 2011–2012 easily, but sometimes that's what is needed. So, if some- group were also more positive about the perceived effects one is extremely annoying, I would not know how to deal of CC on dealing with physical limitations, attitude toward with it". Fortunately, the buddies would work together if illness, and knowledge of the condition than those in the needed and discuss problems during the buddy meeting.
retrospective group (Table ). There were no significantdifferences between expectations and outcomes in the Quantitative results: self-management of young people 2011–2012 group.
with ESRD and pre-post effects of Camp COOLOn average, all participants scored relatively high on Integration of findings self-efficacy measures and on health-related quality of The 2007–2010 and 2011–2012 groups were very similar life (Table ). As for social participation, most of the when considering HRQoL and social participation. The respondents still lived with their parents (respectively first group was more financially self-supporting, but then, 75% and 85% in the retrospective and 2011–2012 their mean age was higher at time of the questionnaire.
groups), and were involved in a romantic relationship All parties acknowledged that young people need support (65.2% and 80.0%). Also, half of them or more were in their development of self-management. This was also independent in the areas of sexuality (50.0% and 52.9%), implicitly observed during the camp: becoming independ- transportation (100% and 70%), leisure (70.8%), and ent was a hot topic, and was processed in activities by 68.4%). The young adults in the retrospective group the campers.
were more frequently financially self-supporting (58.3%) The perceived effects of CC mentioned in the interviews than the participants in 2011–2012 (15.0%) (Table ).
were increased self-confidence, more knowledge of ESRD, The 2011–2012 group reported significantly higher feeling capable of being more responsible and open general self-efficacy after CC (Cohen's d = .31; p < .05).
towards others, and daring to stand up for yourself. In Disease-related self-efficacy did not differ between the T1 the quantitative evaluation of CC half or more of the and T0 assessments. The mean score on the independence participants reported the same effects. Furthermore, domain after CC was significantly higher (d = .44; p < .01), the pre-post analyses showed that general self-efficacy but the mean score on the social inclusion domain was of attendees, and independence as domain of HRQoL significantly lower (d = −.19; p < .05) (Table . Discrimin- of buddies had increased after attending CC, whereas ating between buddies and attendees, only attendees re- social inclusion as domain of HRQoL of attendees had ported a significantly higher score on general self-efficacy decreased. Peer support was the most valued aspect of (d = .37; p < .05) after CC. Also, only attendees perceived CC, both mentioned in the interviews and found in the significantly lower HRQoL on the social inclusion domain questionnaires. It was perceived as informative, but after CC (d = −.33; p < .05). Buddies reported significantly even more importantly as a great opportunity to meet higher HRQoL on the independence domain afterwards fellow patients. This was also observed during CC.
(d = 1.1; p < .05) (Table Appreciation of buddy-to-attendee support was dem- A reasonably large proportion of respondents, i.e. half onstrated in both the interviews and questionnaires.
or more, found that participating in CC had positively Buddies were expected to transfer knowledge and to be influenced their daily lives on several areas, e.g. attitude an example for attendees. Indeed, during the interviews toward illness, independence, self-confidence, ability to attendees mentioned that they learned a lot from buddies, socially interact with others, knowledge of the condition, and observations showed the same. Buddies shared experi- and insight into what the transition to adult care involves.
ences and knowledge, looked after their attendees, and led The least influence was perceived on healthier living the camp. The buddy role was given shape as a pro-active (respectively 16.7% and 37.5% in the retrospective and combination of supervisor, advisor, and leader.
2011–2012 groups) (Table ). The majority of the at-tendees appreciated having a buddy (91% and 85.7%), but the ‘personal' buddy was not always the one they Self-management support, effects of CC, and the buddy role learned the most from. More than half of the buddies It would seem evident that young people with ESRD need in the 2011–2012 group (57.2%) thought they learned support in developing self-management skills. When it more from being a buddy than from being an attendee, comes to social participation, for instance, young people but in the retrospective group fewer buddies agreed in our samples most resemble those we labelled as "out- with this statement (28.6%). The majority in both going laggers" in another study, with little autonomy in groups would recommend being a buddy to others. The the areas of finances, employment, and living, while at mean (±SD) overall CC appreciation score assigned by the same time enjoying romantic relationships and Sattoe et al. BMC Nephrology 2013, 14:279 Table 7 Buddy-attendee comparison: n (%) or mean (±SD) Attendees (n = 14) Educational level (high) Kidney transplant Limitations in mobility General self-efficacy Knowledge domain -] Independence domain Social inclusion domain Social exclusion domain Medication domain Overall score for CC - *T0 = pre-camp; T1 = post-camp.
**Wilcoxon Signed Ranks Test (paired) for differences between T0 en T1 measurements, and Cohen's d for effect sizes.
Missing values: 1n = 12, 2n = 1, 3n = 2, 4n = 13, 5n = 4.
Theoretical range.
socialisation with peers . Becoming independent in for young people with a variety of chronic conditions the areas of living, employment and finances was much [, and benefits of peer support [.
discussed during CC, showing that young people with It seems that Camp COOL creates an environment that ESRD seem to be lagging behind in these areas. This allows for "mastery experiences" and "learning by exam- finding is in line with the results of other studies , and ples" Greater self-efficacy can positively affect different calls for more specific support for work-participation.
levels of functioning in young people with ESRD. This The different attitude towards self-management found for is especially valuable for those who still have to transfer the majority of the older participants, despite similar to adult care and adulthood, and provides support to HRQoL and social participation, indicates that age is an paediatric nephrologists for referring young people to important determinant of self-management.
CC or initiating such camps.
The positive effects we encountered – e.g. increased self- However, we also found diminished sense of social efficacy, self-confidence, and knowledge of ESRD – were inclusion (as part of HRQoL) of attendees after CC. This also reported previously as benefits of therapeutic camping may be due to the fact that a subculture is created Sattoe et al. BMC Nephrology 2013, 14:279 Table 8 Rating Camp COOL: frequency (%) of respondents agreeing or totally agreeing with the statements;mean(±SD) for overall score R* (n = 24) outcomes T0* (n = 32) expectations T1* (n = 32) outcomes I expect (T0) / found (R and T1) CC to positively influence my: Dealing with physical limitations Attitude toward illness Knowledge of the condition Ability to socially interact Insight into what the transition to adult care holds Being prepared for transition to adult care The value of buddy-to-attendee support (yes): As an attendant, I appreciated having a buddy As an attendant, I learned the most from my buddy As a buddy, I learned more during CC than I did as attendant As a buddy, I would recommend being a buddy to others Overall score for CC - *R = retrospective; T0 = pre camp; T1 = post camp.
Theoretical range.
**p < .05; Wilcoxon Signed Ranks Test (independent) for differences between R and T1 (at mean level).
***p < .01; Wilcoxon Signed Ranks Test (independent) for differences between R and T1 (at mean level).
Missing values: 1n = 1, 2n = 13 (attendees only), 3n = 17 (buddies only), 4n = 14 (buddies only), 5n = 8, 6n = 18 (attendees only), 7n = 16 (buddies only).
during the camp in which the attendees perceive be models. This could counteract any negative effects themselves as being different from others. This was of peer support Paediatric nephrologists could identified in previous studies as a possible disadvantage involve their counterparts from adult care in selecting of peer support [], and requires attention. Olsson and potential buddies.
colleagues [] argued that this "over-identification" mightbe counteracted by addressing it in the group. This may Strengths and limitations be an important recommendation for future camps.
This study is one among the first to evaluate therapeutic Participating as a buddy during CC had a positive effect camping for young people with ESRD and one of the few on the independence domain of HRQoL, implying that considering effects of therapeutic camping in chronically being a buddy fosters confidence in future living with- ill young people in MMR. To our knowledge, it is the first out impairments caused by ERSD. Positive effects of a that more specifically looks at the benefits of buddy-to- challenging buddy role have been reported previously attendee support during therapeutic camping. Further- for renal peer support volunteers and peer leaders more, the use of MMR added to the comprehensiveness in an asthma self-management camp [Also, the of this study, and led to a broader insight into CC.
buddies' combined roles of supervisor, advisor and leader Mixed methods research also partially overcomes the for seems to match with the three types of assistance disadvantage of a convenience sample and of the small identified with peer support based on experiential know- sample size inherent to this specific disease group, because ledge (i.e. emotional, appraisal and informational assistance) it allows for exploration of findings from different angles Still, this combined role might be too challenging and at different levels. Although randomised controlled for untrained buddies. Although buddies receive some trials are seen as the golden standard of research evidence, coaching and have buddy meetings, for the buddy role conducting this type of research was not considered to be effective a buddy should possess the skills and feasible. One reason for this was the low prevalence of knowledge required to act as a role model ]. Selection childhood ESRD and the (presumed) difficulty in getting a and training of peer supporters is important. Therefore, a powered sample. We also considered the ethical challenge recommendation for CC in the future is to more carefully associated with randomising young people with ESRD to a select buddies and to specifically train or coach them to potentially beneficial intervention Sattoe et al. BMC Nephrology 2013, 14:279 A limitation of our study is the lack of an appropriate comparison group. In 2012, 518 young people with chronic ESRD: End-stage renal disease; CC: Camp COOL; MMR: Mixed methodsresearch; HRQoL: Health-related quality of life.
conditions responded to a questionnaire about self-management that contained the same measures used in Competing interests this study [Unfortunately, a few respondents had The authors declare that they have no competing interests.
ESRD, so that we could not create a comparison group.
Authors' contributions Also, a printing error in the pre-post questionnaires in JNTS participated in the study's design, carried out the literature study and 2011 led to missing data in the self-efficacy questionnaires, data collection, performed the quantitative and qualitative analyses, and thereby weakening the results of the quantitative evalu- drafted the manuscript. SJ coordinated the study, participated in its design,helped with data collection and qualitative analyses, and perused the ation. Furthermore, the measurements in the 2011–2012 manuscript for intellectual content. AvS conceived the study, participated in group were timed just before and after CC, not allowing its design and coordination, contributed to the interpretation of the data, for exploration of any long-term effects. However, some and reviewed the manuscript for important intellectual content. All authorsread and approved the final manuscript.
long-term effects were explored by comparing this groupwith the retrospective sample. Although they mentioned similar effects of CC in the interviews, the quantitative This study was funded by the Dutch Kidney Foundation. The authors thank results showed that the latter group, which participated the young people, healthcare professionals, and initiators/staff thatparticipated in this study. Furthermore, former students of Bachelor in longer ago, was slightly less positive about the effects.
Nursing and Bachelor in Physical therapy, Charlotte de Haan, Karin van den Future studies should include more measurement mo- Berge, Nathalie Breedveld, Marlies Verweij, Robert de Ruiter, and Karin Volkers ments after the camp to explore the long-term effects.
(Rotterdam University for Applied Sciences) are thanked for their assistancein data collection. Next, we are grateful to our advisory board: Jane de la Finally, allowing buddies to determine the final camping Fosse (COOL Foundation), Harry Weezeman (Dutch Kidney Patient League), programme led to different activities during the two camps and Eefje Verhoof (Amsterdam Medical Center). Jane de la Fosse (Camp and a more manifested role for buddies in CC 2012, which COOL Foundation) and Kees Kuin (Amsterdam Medical Center) helpedexecuting the study in a fantastic way. Jaap Groothoff (Amsterdam Medical may have influenced our findings. However, since results Center) is thanked for his useful input about Camp COOL and for his comments from both years were compared and yielded the same on the quantitative design. Finally, we thank Roland Bal (Erasmus University findings, we expect this influence to be small.
Rotterdam) for his valuable comments on an earlier draft of this paper.
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