Research project - Informal Caregiving in Non-Malignant Respiratory Disease at End of Life
Understanding experiences and identifying how patients can be better supported.
This study looked at the informal care provided for non-malignant respiratory disease (NMRD) for someone at the end of their life.
Primary qualitative data was collected from bereaved caregivers to better understand their experiences.
This 6-month study formed part of a wider programme of work that sought to explore how caregivers providing care for NMRD at end of life can be better supported.
Project Lead: Kathy Rogers, Senior Nurse Lecturer, University of the West of England (UWE) Bristol.
Local Lead: Ali Beattie, Strategy and Development Administrator, St Oswald’s Hospice
The aim was to explore the experiences and roles of informal caregivers for people with Non-Malignant Respiratory Disease (NMRD) at end of life, and to identify what helps and hinders them when delivering this care.
Qualitative methods only.
Five themes were established from the data: Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving; and Future uncertainty and facing death. The findings illustrate the complexity of the caregiving role and highlight unmet needs during the end of life stage.
Significance of results
This evidence highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges including unpredictable disease progression and difficult symptoms such as breathlessness increase the stress on caregivers. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.
Read the published journal below.
Read the published journal