Patients have unwritten duties: experiences of patients with type 1 diabetes in health care.

AIM

To describe the perceptions and experiences of patients with type 1 diabetes, examine their duties and responsibilities for their own care and increase our understanding of the value-based role of patients in the changing healthcare environment.

BACKGROUND

Current type 1 diabetes care highlights the importance of self-care and of patient involvement, which implies the need to evaluate the patients' role. Little is known about patients' views about their own role, and related responsibilities and duties for their own care. This is essential if we are to promote efficient patient involvement.

DESIGN

This study had a qualitative descriptive design.

METHODS

We conducted one-to-one themed interviews with 20 patients with type 1 diabetes during summer 2013 at a diabetes polyclinic in Finland. Data were analysed using inductive content analysis.

FINDINGS

Patients with type 1 diabetes believed that their well-being and self-care required them to consider their own responsibilities and their duties towards themselves, family members, society and healthcare professionals. These duties were seen to have implications for care outcomes, quality of life, and effectiveness and economy in health care. However, patients' background, motivation, relationships with healthcare staff and patient counselling influenced whether they fulfilled those duties, which are all crucial elements in type 1 diabetes care.

CONCLUSION

Patient duties are significant for the well-being of patients with type 1 diabetes, but also for their successful involvement in their care. This study can be used to inform the development of individual care planning and support of patient involvement.