What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities

• Published in: Disability and rehabilitation 2024-06, Vol.ahead-of-print (ahead-of-print), p.1-14
• Main Authors: Pozniak, Kinga, King, Gillian, Chambers, Elizabeth, Martens, Rachel, Earl, Sarah, Kraus de Camargo, Olaf, McCauley, Dayle, Teplicky, Rachel, Rosenbaum, Peter
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Child; Child Health Services; Child, Preschool; Delivery of Health Care; disability; Disabled Children - rehabilitation; family-centred service; Female; Focus Groups; Health Services Needs and Demand; Humans; Interviews as Topic; Male; MPOC; Parent experiences; Parents - psychology; pediatric health services; pediatric rehabilitation; Professional-Family Relations; Qualitative Research; service delivery
• ISSN: 0963-8288; 1464-5165
• DOI: 10.1080/09638288.2023.2229733

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). A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. 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. 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.