Silent voices: Family caregivers' narratives of involvement in palliative care.
Anett Skorpen Tarberg, Marit Kvangarsnes, Torstein Hole and 3 others
PMID 31660172WHAT IT FOUND
Bereaved family caregivers described being well informed about diagnoses but poorly involved in planning care, unprepared for dying, and unsupported after death.
They wanted clear explanations and systematic follow-up.
Key findings
01Caregivers were generally satisfied with diagnosis information but wanted more about how the disease would develop and what their caregiving role would require.
02Caregivers said the patient's wishes often determined services, so their own needs were neglected and help was sought late.
03Caregivers were not involved in terminal-phase planning and most did not receive a systematic follow-up offer after death.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included 11 family caregivers, all bereaved relatives of patients who died of cancer in Norway, so the findings may not apply to other illnesses, countries or caregivers still providing care. Interviews took place 3–12 months after death, and participants may have been grieving, which could affect memory and expression. Findings are subjective experiences interpreted by researchers and cannot be generalized. The first author had experience as an oncology nurse, which could bias interpretation, although co-authors reviewed the analysis.
The easy way to misread this
Do not conclude that palliative services routinely neglect families or that patient-centred care itself harms caregivers; this study of 11 bereaved Norwegian caregivers describes their experiences, not measured service performance.