COPD transitions in health and self-management: service users’ experiences from everyday life

Anne-Grethe Halding,¹ Evy Irene Aarsheim,² Nina Marie Dolmen,³ Aud Jenny Jensen,⁴ Sissel Stavøstrand,⁵ Ellen Karine Grov<sup>1

1</sup>Faculty of Health and Social Sciences, Western Norway University of Applied Sciences, Førde, Norway; ²Flora Municipality Service, Department of Health, Florø, Norway; ³Service User Representative, Årdal, Norway; ⁴Service User Representative, Jølster, Norway; ⁵Service User Representative, Florø, Norway

Purpose: To explore how persons living with COPD experience transitions related to health, self-management, and follow-up from the healthcare services.
Patients and methods: This study is part of a participatory research project. Six males and five females living with COPD, with a COPD assessment test score of 21–29, participated; all the participants were living at home. Data were collected in qualitative research interviews and analyzed using qualitative content analysis highlighting the participants’ experiences.
Results: The findings showed two main themes: “The struggle to keep going” and “The need for continuity and competent facilitation”. The participants reported complex health transitions, with changes in roles and function, demanding exacerbations and critical events, and challenges with learning needed self-management. They expressed a great need for and had great benefit from, education, rehabilitation, and follow-up in their management of everyday life. Not all received offers in line with current guidelines.
Conclusion: In-depth knowledge of patients’ experienced COPD transitions offers clinicians guidance for the timing and quality of follow-up services. Life with COPD entails challenging transitions in health and self-management. Good rehabilitation and follow-up from the healthcare services are needed throughout the disease trajectory. Participation in self-management education and rehabilitation that include psychosocial aspects may facilitate health-enhancing transitions and improve self-management skills. Experienced lack of competence and flexibility among healthcare providers hinders trust and collaboration. Access to stable and competent follow-up in the primary health services may facilitate cohesive services and collaborative self-management.

Keywords: COPD, participatory research, qualitative interviews, rehabilitation, follow-up services