PTOTSLPSurveyFrontiers in rehabilitation sciences2023

Everyday life during the childhood cancer trajectory-childhood cancer survivors' descriptions of the role of caring support.

Margaretha Stenmarker, Maria Björk, Marie Golsäter and 1 others

PMID 37397267

WHAT IT FOUND

Childhood cancer survivors rated emotional presence as the most significant aspect of care.

Older survivors valued this more. Men and those treated with radiation reported lower confidence in their ability to cope. This highlights the need for tailored long-term psychosocial support.

Key findings

01The 'Being with' domain, reflecting emotional presence and availability, was the most prominent factor in how survivors described care.

02Survivors older than 30 rated the importance of healthcare professionals being emotionally present significantly higher than those under 30.

03Men, those diagnosed as adolescents, and those treated with extra-cranial irradiation reported lower scores for 'Maintaining belief' (confidence in their ability to cope).

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs

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What it does not show

The study is retrospective, relying on participants' memories of care received years or decades earlier, which introduces recall bias. The sample size was small (n=62) with a 65% response rate, limiting generalizability. The study excluded patients with central nervous system tumors or leukemia to avoid neurocognitive confounders, creating a specific subset of survivors. The study was conducted at a single center with a specific care philosophy, so results may not apply to other healthcare systems.

Declared interests

Funded by the Swedish Cancer Childhood Fund and Futurum.

The easy way to misread this

Do not interpret the lower 'Maintaining belief' scores in men or irradiated patients as a lack of therapeutic effect from the care received. These are self-reported perceptions of coping ability in adulthood, not objective measures of treatment success or failure.

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