Caregivers ‘obliged’ to care under most stress, palliative care study finds

Caregivers who feel most obliged to care report the most distress in their role, as well as feeling burdened and under strain, a new study on palliative care has found.

Palliative care is an interdisciplinary care approach focused on alleviating distress for people living with life-limiting progressive conditions. Patients with advanced illness often rely heavily on family to take on caregiving roles.

A study on the relationship between patients and their carers, by researchers at Trinity College Dublin, and published in the Journal of Pain and Symptom Management, found where the caregiver did not feel forced into caregiving and the patient did not feel inhibited by their reliance on the caregiver, open communication about the needs and preferences for care were far more likely.

All participants in the study were recruited from a large regional specialist palliative care service in Ireland.

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Dr Geraldine Foley, assistant professor in occupational therapy at Trinity College Dublin, and author of the study, said the findings pinpointed dimensions to the patient and caregiver relationship “that we had not fully appreciated prior to conducting the study”.

“We found that caregivers who felt obliged to care had difficulty communicating with the patient about the patient’s preferences, and that patients who felt obliged to accept assistance tended to minimise caregiver involvement in decision-making,” Dr Foley said.

“However, caregivers who assumed caregiving on their own accord and patients who did not feel constrained in care recipient roles were much more open in their communication with each other and trusting of one another.”

Dr Foley said there were potential clinical impacts to the findings, such as the “importance for healthcare professionals to help the caregiver cope with loss of control and choice in a caregiving role”.

“This includes increasing the level of support available to caregivers but also helping caregivers process and deal with loss of control and choice in a caregiver role,” she said.

“Supporting the patient should involve appropriate open communication between the patient and caregiver because open communication between the patient and caregiver appears to have a positive outcome for the patient as well as the caregiver.”

Meanwhile, a new survey from the All-Ireland Institute of Hospice and Palliative Care found four in 10 adults in the Republic of Ireland prefer not to think or talk about palliative care.

The survey, conducted on 1,000 people in July 2023, also found that seven in 10 adults think palliative care should be considered as early as possible when a person is diagnosed with a life-limiting illness. The survey findings were published to coincide with the 10th annual palliative care week, which started on Sunday.