Young people's participation in the development of a self-care intervention—a multi-site formative research study

The poor outcomes of young people with chronic health conditions indicate that current services and self-care programmes are not meeting the needs of young people. How young people self-manage their condition impacts on long-term health outcomes, but there is little published evidence that details t...

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Bibliographic Details
Published in:Health education research 2013-06, Vol.28 (3), p.552-562
Main Authors: Kime, Nicola, McKenna, Jim, Webster, Liz
Format: Article
Language:English
Subjects:
Adolescent
Adolescents
Adult
Age Factors
Asthma - psychology
Asthma - therapy
Child
Chronic Illness
Daily Living Skills
Diabetes
Diabetes Mellitus, Type 1 - psychology
Diabetes Mellitus, Type 1 - therapy
Disabilities
Diseases
Female
Focus Groups
Health
Health Behavior
Health status
Health technology assessment
Humans
Intervention
Male
Patient Education as Topic - methods
Program Development
PROGRAMME PAPER
Self Care - methods
Self Management
Selfcare
Talking
Type 1 diabetes mellitus
Young Adult
Young Adults
Young people
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Summary:The poor outcomes of young people with chronic health conditions indicate that current services and self-care programmes are not meeting the needs of young people. How young people self-manage their condition impacts on long-term health outcomes, but there is little published evidence that details the development of self-care programmes and their most effective components. This article reports on an innovative formative research study, the purpose of which was to develop a self-care intervention prototype. Participants were 87 young people, aged 12-17, and seven young adult facilitators, aged 18-25, with type 1 diabetes or asthma. Each contributed to talking groups exploring themes that young people wanted to be addressed within a self-care programme. Instead of being focused on 'illness', young people's main concerns were directed toward 'life as an adolescent', while at the same time building sustainable daily routines of self-care. Overall, this article illustrates the process of initiating and implementing a developmental approach focused on young people, while also demonstrating the tailored self-care intervention that the process developed. This approach can be used to involve young people in the design and development of other conditions that rely on self-care interventions.
ISSN:0268-1153
1465-3648
DOI:10.1093/her/cys107