COPD is the 4th leading cause of death in Canada. Symptoms in later stages can be incapacitating. While COPD patients report concerns about being burdensome to their families, how informal caregivers actually experience this role is unclear. The purposes of this study were to increase understanding of informal caregiver experience in advanced COPD, and to identify potential interventions to enhance this experience.
We used interpretive description, a qualitative, grounded approach developed to inform clinical practice related to the phenomenon of interest. We conducted hour-long, one-on-one semi-structured interviews with a purposive sample of 14 COPD caregivers in the Extramural Program, Region 2, New Brunswick, Canada. Interviews were taped, transcribed verbatim, coded conceptually, and analyzed using a constant comparison, iterative method to identify themes emerging within and across interviews.
Most caregivers, even those feeling overwhelmed, would not choose “burden” to describe their experience. They describe their sense of fear, isolation, need for respite, hyper-vigilance, changes in roles, relationships, self-understanding, and coping by taking it “a day at a time.” Many highlight the importance of their spiritual/religious resources. Cumulative losses, including loss of control as perceived by both patients and their caregivers are central to the experience.
Many of their stories illustrate the dynamic of control/powerlessness existent and influential on many different levels of their day-to-day experience. Many of these themes seem rooted in the cumulative and anticipatory losses that are part of the COPD trajectory.
We should acknowledge the substantial, significant losses these caregivers experience in order to develop more appropriate support for their coping efforts and enhance their capacity for resilience through expanded models of care. This support would include enabling periodic respite for those in need.
Catherine Simpson, No Financial Disclosure Information; No Product/Research Disclosure Information