Home Hospice Caregivers' Perceived Information Needs.
Ariel Shalev, Veerawat Phongtankuel, M Carrington Reid and 7 others
PMID 30301363WHAT IT FOUND
51 of 105 home hospice caregivers, interviewed after their loved one died or was discharged, had unmet information needs about what hospice provides, what dying will look like, and what caregiving tasks to expect.
Key findings
0151 participants reported unmet information needs, and 54 said they did not wish they had known anything else.
02The main themes among caregivers with needs were general hospice information (17), what to expect at end of life (19), and support provided by hospice (30).
03Caregivers asked for clearer information about hands-on tasks such as administering medications and bathing, and about who would visit and how quickly help could arrive.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Participants were recruited from a single nonprofit hospice organization in an urban setting, so the findings may not apply to other hospice programs. Only two open-ended questions were used, which may not have captured all caregiver information needs. The response rate was low: 105 of 679 caregivers phoned completed interviews, with 31.5% not answering after three attempts and 53% refusing. Many caregivers were recently affected by loss, which may have shaped who could be reached and what they were willing to discuss. Interviews were short, lasting between 1 and 8 minutes, so some needs may not have been fully explored.
Declared interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The easy way to misread this
Do not read this as evidence that giving caregivers more information improves hospice experience or patient outcomes. The study only reports what caregivers said they had not known after discharge.