Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease

J Palliat Care. 2009 Autumn;25(3):157-63.


Aim: This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD).

Method: Semi-structured interviews were undertaken with nine carers who had lost a loved one in the preceding 6 to 24 months. These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis.

Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support.

Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced.

MeSH terms

  • Aged
  • Bereavement
  • Caregivers / psychology*
  • Female
  • Health Services Accessibility
  • Health Services Needs and Demand
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Palliative Care / psychology*
  • Pulmonary Disease, Chronic Obstructive / nursing*
  • Qualitative Research
  • Social Support
  • Terminal Care / psychology*