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Abstract
Purpose
Family-centred service (FCS) is an established approach for delivering services in children’s rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0).
Methods
A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis.
Results
Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child’s care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.
Conclusions
This article identifies components of healthcare that families find helpful and desirable.
IMPLICATIONS FOR REHABILITATION
Family-centred service (FCS) is an established approach for delivering services in children’s rehabilitation and healthcare.
However, parents continue to experiences aspects of care that are not family-centred.
Parents of children with disabilities identified components of care that they want from healthcare services.
New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.
Acknowledgements
The authors would like to thank all the parents who participated in this study as well as the remaining MPOC study members: Connie Putterman, Alison Martens and Eric Duku.
Data availability statement
The data that support the findings of this study are available on request from the corresponding author KP. The data are not publicly available due to their containing information that could compromise the privacy of research participants.