A day at a time: caregiving on the edge in advanced COPD

Abstract

A Catherine Simpson1, Joanne Young2, Margaret Donahue3, Graeme Rocker41Faculty of Graduate Studies, 2School of Health Sciences, 3School of Health Administration Dalhousie University, Halifax, Nova Scotia, Canada; 4Divisions of Respirology and Palliative Medicine, QEII Health Sciences Centre and Dalhousie University, Halifax, Nova Scotia, CanadaAbstract: The human cost of advanced chronic obstructive pulmonary disease (COPD) for informal caregivers in Canada is mostly unknown. Formal care is episodic, and informal caregivers provide the bulk of care between exacerbations. While patients fear becoming burdensome to family, we lack relevant data against which to assess the validity of this fear. The purpose of our qualitative study was to better understand the extent and nature of ‘burden’ experienced by informal caregivers in advanced COPD. The analysis of 14 informal caregivers interviews yielded the global theme ‘a day at a time,’ reflecting caregivers’ approach to the process of adjusting/coping. Subthemes were: loss of intimate relationship/identity, disease-related demands, and coping-related factors. Caregivers experiencing most distress described greater negative impact on relational dynamics and identity, effects they associated with increasing illness demands especially care recipients’ difficult, emotionally controlling attitudes/behaviors. Our findings reflect substantial caregiver vulnerability in terms of an imbalance between burden and coping capacity. Informal caregivers provide necessary, cost-effective care for those living with COPD and/or other chronic illness. Improved understanding of the physical, emotional, spiritual, and relational factors contributing to their vulnerability can inform new chronic care models better able to support their efforts.Keywords: chronic obstructive pulmonary disease (COPD), informal caregiving, vulnerability, coping