The process of adaptation: Parents' journey navigating their child's chronic health condition diagnosis.
Amy L Thompson, Sarah L Smith
PMID 40153269WHAT IT FOUND
Parents described adapting to their child's diagnosis through five interwoven elements: grief, anxiety, unknowing, responsibility, and positivity.
These experiences cycled rather than followed linear stages, with time and experience helping parents move from persistent negative emotions toward intermittent ones.
Key findings
01Parents described a fluid, cyclical experience of adaptation involving five interwoven elements: grief, anxiety, unknowing, responsibility, and positivity.
02Grief was often complex because the loss was intangible, centered on a reshaped vision for the family rather than the child's death.
03About half of the parents felt guilt, believing they either caused the condition or were responsible for negative outcomes due to their decisions.
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 sample was small (n=15) and predominantly White mothers, which may limit the applicability of findings to fathers, other racial or ethnic groups, and different socioeconomic backgrounds. The study relied on self-reported experiences and did not include child or provider perspectives. Recruitment via convenience and snowball sampling may have introduced selection bias, potentially capturing parents who were more willing or able to share their experiences.
The easy way to misread this
Do not interpret the five elements as fixed stages that parents must pass through in order. The study found these experiences were interwoven and cyclical, meaning parents may return to grief or anxiety even after reaching a place of positivity.