Between hope and hopelessness: COPD patients' and their family members' experiences of interacting with healthcare providers – a qualitative longitudinal study

Abstract

Background: Patient–family–healthcare provider interaction seems important for patients with chronic obstructive pulmonary disease (COPD) and their family members' self-management practices. Because the need for support might be enhanced after a hospitalisation, it might be beneficial to explore this interaction further in follow-up health care. Aim: To explore the meaning of patients' and their family members' experiences of interacting with healthcare providers to their daily self-management over time. Methods: Participant observations and in-depth interviews were conducted repeatedly with 10 patients and seven family members during follow-up visits at hospital and at the participants' homes between 2014 and 2016. A phenomenological–hermeneutical approach was used to interpret the data. Results: ‘Between hope and hopelessness’ involved frustrations, concerns and doubts, all of which could relate to the interaction with healthcare providers. ‘Seeking support from healthcare services’, ‘navigating between healthcare providers’ and ‘collaborating with healthcare providers at home’ could entail opportunities to strengthen self-management and hope; however, it could also entail reduced faith in getting the right help and hopelessness. Conclusion: During a period of transition after hospitalisation, available and well-coordinated healthcare services, and alliances with healthcare professionals are crucial to COPD patients and their family members in terms of their self-management, hope and well-being.