Background: The majority of terminally ill people wish to remain, and be cared for, at home by family members with the support of the community care team. However, informal carers tend to feel unprepared for the caring role, are often elderly, have varying levels of support and suffer stress and anxiety as a result of the role.
Aim and objectives: The aim of this study was to explore the lived experiences of informal carers providing care for an adult receiving palliative care at home. To that end it explored carers’ experiences about what they need to know in order to provide care and the practical skills that carers believe they need for their role.
Methods: A qualitative research design was employed, using an interpretative phenomenological approach. Semi-structured interviews were conducted, digitally recorded and transcribed verbatim. A thematic content analysis method was adopted for analysing interview transcripts.
Results: A total of six interviews were conducted with eight bereaved participants (three participants were from the same family and did a joint interview). Two main themes emerged from the data, with associated subthemes: (1) knowing the right thing to do (subthemes: need for knowledge and practical skills; managing symptoms and administering medications; knowing what is best for the person); (2) personal experiences of caring (subthemes: impact of caring on health; the need to accept help; and experiencing a sense of satisfaction). Participants suggested that carers require adequate preparation for the caring role, in terms of the necessary skills, the provision of timely information and knowledge, assessment and provision of practical and emotional support.
Conclusions: Carers need specific knowledge and skills at different points over the duration of their role. Ultimately, carers need to know that they are doing the right thing and that appropriate help and guidance will be available if they need it. Adequate support should result in the experience of caring for a loved one with palliative care needs at home being improved.
Conflicts of interest: none
- Education and support
- Informal carers
- Palliative and end-of-life care
- Place of death
- Symptom management
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