Aim and objectives: To explore the experiences of patients with chronic obstructive pulmonary disease and their family members relating both to participation in care during hospitalisation for an acute exacerbation in chronic obstructive pulmonary disease, and to the subsequent day-to-day care at home.
Background: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited.
Design: This study adopted a longitudinal design informed by ethnographic fieldwork principles.
Methods: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis.
Results: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterised by navigating between mutual pressure and consideration within the family.
Conclusion: Family members play an important role in ensuring that patients are seen, heard and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management.
Relevance to clinical practice: Knowledge of the challenges that patients with chronic obstructive pulmonary disease and their family members face in participating in care activities could inform future development of family-centred care approaches tailored to individual needs.
Keywords: chronic obstructive pulmonary disease; family members' perspective; family-centred care; participant observation; participation in care; patients' perspective; professional-family relations; self-management; semistructured interview.
© 2017 John Wiley & Sons Ltd.