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

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.

Active carers: living with chronic obstructive pulmonary disease.

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world.To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers' needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.