‘Support Matters!’ Project

Project Description

Challenge

While there has been a great deal of research into causes and potential therapies for children with neurodisability, there has been a significant lack of support for children and their families as they grow and develop. Therefore, researchers created “Support Matters!” to understand these needs better.

Project Summary

Researchers conducted individual and focus group interviews with parents of children with neurodisabilities in Alberta and Quebec. They used these interviews to identify family support needs at different times in the life stages of a child.

From these interviews, they identified the ten key needs. Those needs are:

Quality and timely information
Care coordination and navigation
Parent-to-parent support
Programs focused on the child and her/his needs
Assistance in framing needs and expectations
Parent self-care
Continuity of care and support coordination
Family programs
Financial support
Public awareness and education

The top five needs at different developmental junctures for children and youth – for example, at the start of high school – are being finalized.

Results

Findings demonstrate that there are everyday needs across all developmental stages but that these may be somewhat nuanced depending on a child’s stage and other circumstances. Accordingly, there are diverse and specific needs for support and interventions at particular developmental stages. Researchers presented these findings at the KBHN-Childbright 2017 Conference.

“Support Matters!” researchers are now further developing knowledge translation guidelines and training modules for extensive ‘on-the-ground’ impact. They are also being used by the Navigation Resource project to directly inform training on navigational interventions to reflect the support needs of families across all stages of development.

Funding

This project was part of the larger “Social Determinates of Health Program.” As part of the program, this project was funded $800,000 by the Kids Brain Health Network and $640,431 by participating partners.