Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.
Celeste R Phillips, Joan E Haase
PMID 30346329WHAT IT FOUND
Adolescent and young adult cancer survivors described providers making them feel disconnected by talking down, ignoring requests, rough or careless care, and failing to protect privacy or rest.
These memories persisted after treatment.
Key findings
01Survivors described feeling depersonalized before diagnosis when providers did not take time to seek information about their symptoms and concerns.
02Disconnectedness arose when providers undermined personhood, inflicted preventable harm or discomfort, ignored requests, or failed to watch for basic needs.
03Survivors often felt powerless to protest these violations, and they were still struggling with the experiences after treatment ended.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
Only nine participants were enrolled, all aged 20 to 23 years, and eight were Caucasian, so the themes may not represent other ages, races, settings, or cancer types. The sample was drawn from one childhood cancer survivor clinic, and all participants were already attending long-term follow-up and generally felt connected to providers, so survivors who are disconnected or not in follow-up may be underrepresented. The study did not examine healthcare providers' intent or perspective, so it cannot show whether the behaviors were purposeful or how common they are. It is a qualitative study of experiences, not a test of whether communication training, patient advocacy, or teaching-encounter changes improve care.
Declared interests
The authors declared no conflicts of interest. The article is listed as supported by NIH and non-U.S. government research support.
The easy way to misread this
Do not read these vivid accounts as proof that most healthcare providers harm adolescent and young adult patients or that specific communication changes will improve outcomes. Only nine survivors were interviewed, provider intent was not studied, and no intervention was tested.