Services doing the best they can: service experiences of young adults with type 1 diabetes mellitus in rural Australia

Abstract

Aims and objectives: To describe the healthcare experiences of young adults with type 1 diabetes who access diabetes services in rural areas of New South Wales, Australia.

Background: The incidence of type 1 diabetes in childhood and adolescence is increasing worldwide; internationally, difficulties are encountered in supporting young people during their transition from children to adulthood. Consumers' experiences and views will be essential to inform service redesign.

Design: This was a qualitative exploratory study.

Methods: Semistructured telephone interviews were conducted with 26 people aged 18-28 years living rurally, recruited through staff in four regional healthcare centres in 2008.

Results: Two key themes were evident: lack of access (comprised of transfer to adult services, access to health professionals and access to up-to-date information) and age-appropriate provision. The impact of place of residence and personal motivation crossed all themes. Participants contrasted unfavourably the seamless care and support received from paediatric outreach services with the shortages in specialist and general practice-based care and information and practical problems of service fragmentation and lack of coordination experienced as adults. They identified a range of issues including need for ongoing education, age-appropriate services and support networks related to developing their ability to self-manage. They valued personal service; online and electronic support was seldom volunteered as an alternative.

Conclusion: This was a first view of rural young people's experiences with adult diabetes services. Reported experiences were in line with previous reports from other settings in that they did not perceive services in this rural area of Australia as meeting their needs; suggestions for service redesign differed.

Relevance to clinical practice: New models of age-appropriate service provision are required, to meet their needs for personal as well as other forms of support, whilst acknowledging the very real resource limitations of these locations.