"What Services?": Stakeholders' Perceived Unmet Support Needs for Parents With Neurological Disorders.
Evelina Pituch, Rym Ben Lagha, Marjorie Aunos and 9 others
PMID 37554061WHAT IT FOUND
Stakeholders described a severe lack of coordinated support for parents with neurological disorders, citing service gaps, inaccessible environments, and stigma.
They identified the need for long-term, family-centered care that extends beyond the infant stage to address evolving needs.
Key findings
01Participants reported that existing services are fragmented, leading to discontinuity and difficulty in accessing support for parenting roles specifically.
02Physical accessibility barriers in the community, including transportation and housing, significantly hinder parents' ability to fulfill their roles.
03There is a widespread lack of awareness among healthcare and social workers about the possibility and needs of parents with disabilities.
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 small and predominantly female, highly educated, and French-speaking, which may not represent the experiences of men, lower-income individuals, or other linguistic groups. Convenience sampling was used, so the participants may not be representative of all parents with neurological disorders. The study relied on self-reported perceptions, which can be influenced by individual biases and experiences. Only two parent-spouse dyads were included, limiting the understanding of couple dynamics.
Declared interests
The study was funded by the Office des personnes handicapées du Québec (OPHQ) and the Réseau provincial de recherche en adaptation-réadaptation (REPAR). Clinicians received a complimentary lunch, and other participants received CAD$50 compensation.
The easy way to misread this
Do not interpret these themes as evidence that specific interventions are effective. This study reports perceptions and needs, not outcomes from a tested treatment program.