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

• Published in: Health education research Vol. 28; no. 3; pp. 552 - 562
• Main Authors: Kime, Nicola, McKenna, Jim, Webster, Liz
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 01.06.2013
• 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
• ISSN: 0268-1153; 1465-3648
• DOI: 10.1093/her/cys107

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.