Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer.
Terrah Foster Akard, Sarah Wray, Debra L Friedman and 6 others
PMID 31804281WHAT IT FOUND
Parents said the web legacy program was helpful and encouraged family talk, but many found it hard to use.
All 18 parents who rated the movie format liked it. This is parent feedback, not proof it works.
Key findings
01Among 81 parents completing the follow-up survey, 23 (28.4%) gave positive comments such as very helpful, and 19 (23.5%) said they liked the intervention exactly as it was.
02Parents most often suggested offering the intervention throughout the cancer journey (33; 40.7%) and making the web program more user-friendly (19; 23.5%).
03All 18 parents who completed the cinematic survey were positive about the movie format, and 13 (81.3%) said it made the story more meaningful to themselves.
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 through Facebook, and the sample was mostly female, Caucasian, college-educated, and living in the Mid-Western United States. Results apply only to children aged 7 to 17 years with relapsed or refractory cancer and their parents, not to younger children, other illnesses, or families without internet access. 42 (28%) parents dropped out before completing T2, and 10 (7%) completed T2 more than 6 months after enrollment. The paper reports parent perceptions and implementation feedback, not tested clinical outcomes, so it cannot show that the program works. The authors could not access medical records, so they did not know how many children died. Attrition differed between intervention and control groups, and early user-friendliness problems contributed to dropouts.
Declared interests
No author conflict-of-interest declaration appears in the supplied text. The publication types list NIH extramural research support.
The easy way to misread this
Do not read parent satisfaction as proof that the web program works. The paper reports parent feedback and feasibility, not tested clinical outcomes, and the program was not publicly available.