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To prepare for family caregiving in specialised palliative home care


Family caregivers have been given increasing importance in palliative home care and face a great responsibility involving the emotional and practical care of a person suffering from incurable illness. Preparedness for caregiving could serve as a moderator of negative effects in caregiving and promote caregiver wellbeing. However, few studies have used qualitative methods to explore the phenomenon in palliative care.


The aim of this study was to explore the experience of preparing for caregiving among family caregivers in specialised palliative home care.


The experience of preparing for caregiving could be described as an ongoing process in family caregivers in specialised palliative home care. The process was illustrated through three different sub-processes.
Awaring – realizing the seriousness of the situation
This was a process of growing awareness into the severity of the patient’s condition and emotionally confronting changes coming with the diagnosis.
Adjusting – managing a challenging situation
This process involved the adjustment to responsibilities as a caregiver and a changed relationship with the patient. It also included the family caregivers’ struggle to balance their own needs to the patient’s.
Anticipating – planning for the inevitable loss
This was described as a process of thinking ahead. The view of the future often changed with the fluctuating condition of the patient. The process also included reflections about the caregiving of a dying person and how to prepare for the loss.

Conclusion & Implications

Family caregivers in palliative home care are involved in an ongoing process of preparing for caregiving. Family caregivers are not just preparing for caregiving in advance, they also prepare through the challenges of caregiving.
This study provides valuable knowledge of preparedness as a process, and thus something that needs to be supported continuously. From the results, it could also be assumed that intervention studies need to focus not only on how to promote feelings of preparedness in family caregivers, but also on how to manage the process of preparing for caregiving and its sub-processes.

Senast uppdaterad: 2016-11-18.

Forskningsenhet/inriktning: Palliativt forskningscentrum
Projektstatus: Avslutat

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