Caring for a family member with COPD: Exploring carers' needs

Abstract

Background: Research of the impact of Chronic Obstructive Pulmonary Disease (COPD) on patients' family carers is limited when compared to other chronic diseases such as cancer, heart disease or dementia. The disease places a particular burden on families but their support is crucial for the patient's adjustment to the disease. However, current knowledge on the specific needs of family carers living with a patient with COPD is scarce.

Aims: This exploratory study aimed to contribute to a better understanding of the family carers' needs of patients with advanced COPD (stage III and IV). Methods: Qualitative semi-structured interviews were conducted with ten carers (female=8), with a mean age of 57.6 (SD=7.1) years old. The majority were spouses (n=9) and were caring for more than 4 years (n=6). All interviews were audio-recorded, transcribed and submitted to thematic analysis. Results: Main results suggest carers' needs for: i) information about the disease to provide adequate care and to discern between kinds of attention needed to respond to symptoms (e.g., difficulties in recognising when a exacerbation is occurring) (n=8); ii) emotional support, like having someone trustworthy to talk about the caregiving experience (n=4); iii) respite care, in order to allow carers to take some time for their own (n=3); iv) instrumental support, as male carers reported difficulties in providing housework or meal preparation (n=2). Conclusions: The results strengthen the current state of knowledge regarding caregiving demands within the context of COPD. Understanding family needs providing carers with education about the disease and emotional support is essential to the management of COPD and to support carers in their caregiving role.