Parents of Children and Young People With Long-Term Physical Health Conditions-Experiences of Navigating School.
Vicky Hopwood, Simon Pini, Megan Roker
PMID 40743316WHAT IT FOUND
Parents of children with long-term physical health conditions reported schools often failed to manage health, support missed learning, listen to children or include them safely.
Parents compensated, advocated, advised and fought for equality. Their advocacy strained home-school relationships and their own well-being.
Key findings
01Parents said schools often failed to safely manage their child's health, including medication, reasonable adjustments and access to medically trained staff.
02Support for learning missed because of illness or appointments was generally unsystematic, and parents compensated by paying for private tuition and securing exam adjustments.
03Parents described roles in compensating, advocating, advising schools and fighting for equality, and said this strained school-home relationships and their own well-being.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample was 27 parents, mostly White British mothers, so it may not represent fathers, other ethnic groups or families not already in the INSCHOOL project. The study did not examine whether children had other conditions or how parental age, education and advocacy shaped the accounts. It did not test whether any school service, health plan or professional contact improves outcomes, so it cannot show what works. Parental needs were not the focus, although parent well-being emerged as affected.
Declared interests
The INSCHOOL project was funded by the National Institute for Health and Care Research (NIHR).
The easy way to misread this
Do not read these themes as proof that a named school or health service change works. The study reports parents' experiences and unmet needs. It did not test an intervention.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →