Former Primary Caregivers of Patients With Glioblastoma Multiforme Evaluate the PATH (Preparedness Assessment for the Transition Home) Instrument.
Elizabeth A James, Marlee S Wallace, Megan P Chard and 3 others
PMID 39278630WHAT IT FOUND
Most bereaved caregivers of people with glioblastoma said the PATH home-transition questionnaire would have been helpful (103 of 124), especially for illness effects, resources, death planning and caregiver self-care.
It was not tested as an intervention.
Key findings
01124 participants provided feedback on the PATH instrument, and 83.1% (n = 103) rated it very or somewhat helpful overall.
02Optional feedback from 42 participants produced 54 separate comments and 17 codes, grouped into four themes: education on illness and treatment effects, access to care team and resources, death and after death, and self-care.
03Among 191 demographic respondents, hospice care was reported by 172 (90.1%), palliative care by 64 (33.5%), patient or nurse navigators by 63 (33.0%), and mental health counsellors by 34 (17.8%).
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample came from one Facebook group of bereaved caregivers, so it may not represent caregivers who do not use social media or who had different care experiences. Participants were asked to judge the instrument after the patient had died, and bereavement ranged from 0.5 to 146.0 months (median 25 months), so memory and hindsight may shape ratings. Most participants were female (97.9%; n = 187) and spouses or partners (97.4%), and 99% of patients were male. This restricts generalisability. 67 of 191 who consented did not complete the PATH survey, so the main helpfulness result rests on 124 people. The rating scale had no neutral option, which may have pushed participants toward helpful or not helpful answers. The study measured retrospective opinions about a questionnaire, not whether using PATH changes caregiver readiness, patient care, or outcomes.
Declared interests
Barbara J. Lutz and Michelle E. Camicia are co-owners of PATH2Caregiving, LLC and the PATH instrument; no other authors declared conflicts of interest.
The easy way to misread this
Do not read the 83.1% helpfulness rating as proof that PATH improves caregiver readiness or patient outcomes. The study asked bereaved caregivers to retrospectively rate a questionnaire, not to test its use.