19 research outputs found
Measuring perceived benefit and disease-related burden in young cancer survivors: validation of the Benefit and Burden Scale for Children (BBSC) in the Netherlands
Item does not contain fulltextPURPOSE: Perceiving favourable changes from one's illness may go hand in hand with experiencing harmful psychosocial effects. Each of these constructs should be considered when examining children's levels of psychological adjustment following stressful life events. A paediatric instrument that accounts for both positive and negative impact of stressful events has not been investigated in The Netherlands before. The aim of the study was to investigate psychometric properties of the Dutch version of the Benefit and Burden Scale for Children (BBSC), a 20-item questionnaire that intends to measure potential benefit and burden of illness in children. METHODS: Dutch paediatric survivors of childhood cancer aged 8-18 (N = 77) completed the BBSC and other psychological questionnaires: Pediatric Quality of Life Inventory (health-related quality of life), State-Trait Anxiety Inventory for Children (anxiety), Children's Revised Impact of Event Scale (posttraumatic stress) and Strengths and Difficulties Questionnaire (behavioural functioning). Reliability and validity were evaluated. RESULTS: Internal consistency (Cronbach's alpha, benefit 0.84, burden 0.72), test-retest reliability (benefit r = 0.74, burden r = 0.78) and homogeneity (mean inter-item correlation, benefit r = 0.34, burden r = 0.22) were satisfactory. Burden was associated with HRQoL (-), anxiety (+), posttraumatic stress symptoms (+) and behavioural problems. Benefit did not correlate with the psychological outcomes. CONCLUSIONS: The Dutch version of the BBSC shows promising psychometric properties. Perceived benefit and disease-related burden are distinct constructs; both should be considered when examining children's psychological adjustment to potentially traumatic experiences. The BBSC may be useful as monitoring and screening instrument
Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL
__Abstract__
__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. The attendees are young people who still
have to transfer to adult care. This study aimed to explore the effects of this specific form of
peer-to-peer support on the self-management of young people (16–25 years) with ESRD who
participated 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-post surveys among participants (n = 62), and
observations during two camp weeks.
__Results__ Self-reported effects of participants were: increased self-confidence, more disease-related
knowledge, feeling capable of being more responsible and open towards others, and daring to
stand up for yourself. According to participants, being a buddy or having one positively
affected them. Self-efficacy of attendees and independence of buddies increased, while
attendees’ sense of social inclusion decreased (measured as domains of health-related quality
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. Peerto-
peer support through buddies was much appreciated. Support from young adults was not
only beneficial for adolescent attendees, but also for young adult buddies. Paediatric
nephrologists are encouraged to refer patients to CC and to facilitate such initiatives.
Together with nephrologists in adult care, they could take on a role in selecting buddies