1181740081108116 1.14
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.
Received: 13 September 2013 Accepted: 16 December 2013Published: 21 December 2013
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Source: http://campcool.nl/wp-content/uploads/2015/12/Sattoe-et-al.-2013-CC.pdf
19 Urinaryretention Jalesh N. Panicker, Ranan DasGupta, Sohier Elneil and Clare J. Fowler of the outflow tract. Urethrocystoscopy is then usuallyperformed. Impairment of bladder emptying may manifest as com- Mechanical causes in men generally result from an plete or partial urinary retention, and be either acute or anatomical obstruction to the bladder outflow, due
Geophysical Journal International Geophys. J. Int. (2002) 148, 256–277 Morphological dating of cumulative reverse fault scarps: examplesfrom the Gurvan Bogd fault system, Mongolia S. Carretier,1,∗ J-F Ritz,1 J. Jackson2 and A. Bayasgalan21Laboratoire de G´eophysique Tectonique et S´edimentologie, CNRS-UMR, Universit´e Montpellier II, 4, Place Eug ene Bataillon, 34000 Montpellier, France.E-mail: [email protected] Laboratories, Madingley Road, Cambridge, CB3 OEZ England