PTOTSLPOtherDevelopmental medicine and child neurology2026

Interventions supporting the empowerment of parent carers of children with neurodisability and other long-term health conditions: A scoping review.

Jim Reeder, Morwenna Rogers, Phillip Harniess and 5 others

PMID 41139287

WHAT IT FOUND

Most interventions for parent carers target the carer's own behaviour, not the health system.

Few involve carers in design or report implementation details. Clinicians should look for existing programmes rather than creating new ones, but beware of poor descriptions.

Key findings

01Almost all interventions (137 of 145) were parent carer-focused, with only two aiming to change the behaviour of other actors in the system.

02There is significant underreporting of how interventions were designed and implemented; only 10% had a published logic model and 13% had a clear implementation strategy.

03Parent carers were involved in the co-design of only 26% of interventions and delivered only 23% of them.

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 concept of 'parent carer empowerment' is poorly defined, leading to a heterogeneous mix of interventions being included. No quality assessment or risk of bias appraisal was performed on the included sources, as is standard for scoping reviews. Full-text screening was primarily done by a single reviewer due to resource constraints, though exclusions were double-checked. There may be missed interventions, particularly those not published in academic literature, despite efforts to search grey literature.

Declared interests

The authors declared no competing interests. The review was part of a project delivered in partnership with parent carer research partners, who were involved in establishing aims and testing the database usability.

The easy way to misread this

Do not assume that the high number of interventions means there is strong evidence for their effectiveness. This review mapped what exists, not what works. Many interventions lack clear descriptions of how they are delivered or how they are expected to change outcomes, so selecting one based on popularity or availability may not lead to better results.

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 →