Informal care‐giving in advanced chronic obstructive pulmonary disease: lay knowledge and experience

Abstract

The aim of this research was to explore the experiences of informal caregivers providing care in the home to a family member with chronic obstructive pulmonary disease. Advances in chronic obstructive pulmonary disease treatment, increasing emphasis on early discharge and home-based care programmes enable those with advanced chronic obstructive pulmonary disease to remain at home. However, little is known about the consequences of these initiatives for informal caregivers. A qualitative exploratory approach. Semi-structured interviews with 11 family caregivers of people with advanced chronic obstructive pulmonary disease. Six core themes emerged including 'then and now' reflecting caregivers' sense of loss and enmeshment with the illness experience and burden. The caregivers' experience of illness burden included symptom, cultural and lifeworld meanings. Relationships between formal health care and healthcare professionals were rendered difficult by their perceived failure to look beyond acute exacerbations as discrete events rather than integral to the illness trajectory as a whole. In failing to actively engage with caregivers, our current approaches to supporting persons with advanced chronic obstructive pulmonary disease may compound the care and illness burden experienced by family caregivers. This study illustrates the potential for nursing to increase or lessen the caregiver burden through understanding the illness experience as one that is shared by both caregiver and care recipient.