Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study of family caregivers' experiences

Aims and objectives To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design Phenomenology. Methods This is a phenomenological study based on semi-structured interviews with sixteen primary caregivers of chronic obstructive pulmonary disease patients. Interview data were analysed using Colaizzi's descriptive analysis framework, to identify significant themes and sub-themes. Data were collected between April-December 2017 in a Teaching Hospital in Italy. The study was designed and reported following the COREQ guidelines and checklist. Results Analysis elicited five themes embracing various aspects of the caregivers' lived experiences: (a) a home disrupted, (b) living with constant vigilance and anxiety, (c) feeling the need to escape (d) self-justifications for caregiving role/duty, and (e) feeling abandoned by professionals. Conclusions Our results show that carers experience a range of difficulties when caring for their relative at home with chronic obstructive pulmonary disease. Some of these are linked to the physical disruption of their home but many are linked to feelings of inability to cope and the psycho-social impact of the caring role. The study also shows how participants felt unsupported by professionals. Focused support for carers is required to enable them to meet these challenges. Relevance to clinical practice Healthcare professionals should be trained to provide technical and psychological support to caregivers especially during the phases of disease that may involve episodes of exacerbation. Home care and continuity of care can work if there is excellent communication and collaboration between healthcare professionals and caregivers. Developing appropriate support for family caregivers is essential to address the problems they can face.