Hospice Family Caregivers' Uncertainty, Burden, and Unmet Needs in Prospective Audio Diaries.
Megan C Thomas Hebdon, Kristin G Cloyes, Marilisa Vega and 5 others
PMID 37851960WHAT IT FOUND
Hospice family caregivers described being overwhelmed by waiting, guilt, and unmet support.
They reported feeling abandoned when visits or follow-up were not available, needing clearer guidance about dying, and lacking respite.
Key findings
01Caregivers described burden as conflicting emotions, isolation, concerns about their own health, and helplessness in a liminal space.
02Caregivers reported unmet needs related to unclear expectations of hospice team support, not foreseeing the extent of their role, and communication challenges with the team.
03Caregivers described difficulty advocating for needed care, retaining information, and receiving clear early communication about the dying process and DNR/DNI implications.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was mostly white, so the findings may not transfer to racially or ethnically diverse caregivers. The diaries used different prompts, and the authors say the prompts themselves could have yielded different data. The article text does not state the total number of caregivers analyzed. The study describes experiences and cannot show that any intervention reduced caregiver burden.
Declared interests
The article metadata lists NIH extramural research support. The authors declared no conflicts of interest.
The easy way to misread this
Do not conclude that reviewing audio diaries or targeted caregiver visits reduced burden. The paper reports caregiver experiences and suggests possible support approaches, but it did not test those approaches.