45 research outputs found
âWhat we wantâ: chronically ill adolescentsâ preferences and priorities for improving health care
Background: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents' preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected. Methods: This research was a sequential mixed methods study in adolescents aged 12-19 years with various chronic conditions treated in a university children's hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items. Results: Having "a feeling of trust" and "voice and choice" in the hospital were central to these adolescents. Regarding providers' qualities, 'being an expert' and "being trustworthy and honest" were ranked highest, followed by "being caring and understanding", "listening and showing respect", and "being focused on me". Regarding outpatient consultations, preferences were ranked as follows: "answering all questions"; "attending to my and my parents' needs"; and "clear communication", while "limited waiting times" and "attractive outpatient surroundings" scored lowest. Regarding hospitalization, adolescents most preferred to 'avoid pain and discomfort', "keep in touch with home", and "be entertained", while "being hospitalized with peers" and "being heard'" were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%). Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly
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 âbuddiesâ) 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 (16â25 years) with ESRD who
participated in Camp COOL (CC) (hereafter referred to as âparticipantsâ).
__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
attendeesâ 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