Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review

Abstract

Background: Caring for a child with long-term functional limitations can have a negative impact on the physical and psychological well-being of the caregiver. Family-centered care (FCC) interventions have the potential to empower caregivers and contribute to their well-being. This systematic review aimed to synthesize existing evidence on the effectiveness of FCC interventions in improving the well-being of caregivers of children with cerebral palsy (CP), and identify the key components of such interventions that are most commonly practiced and deemed effective. Methods: This review systematically searched seven databases for randomized controlled trials that evaluated the effectiveness of any FCC intervention on the well-being of caregivers of children with or at risk of CP. We used the Cochrane RoB 2.0 tool to assess risk of bias and Critical Appraisal Skills Programme (CASP) checklist for critical appraisal. Due to high heterogeneity of studies, narrative synthesis was used to summarize the data. Results: The review consists of 11 studies which were categorized into five sections based on the components of FCC intervention provided in each individual study: 1. Information provision, and Enabling and partnership (n= 5); 2. Information provision, and Respectful and supportive care (n= 1); 3. Enabling and partnership (n= 2); 4. Enabling and partnership, and Respectful and supportive care (n= 2); 5. Information provision, Enabling and partnership and Respectful and supportive care (n= 1). Risk of bias was low in four studies, unclear in two studies, and high in five studies. Conclusion: FCC interventions were found to be effective in improving caregivers’ satisfaction with attainment of child and caregiver goals. Evidence from multiple studies does not strongly support the effectiveness of FCC interventions on caregiver’s mental health, parenting and personal outcomes. Limited evidence precludes a conclusion on the effectiveness of the components of FCC on well-being of caregivers of children with CP.

Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review

“…The sample size in these studies varied from n=21 to n=251, for the parents and children with CP. Table 1 58 provides an overview of the characteristics of each study, while the TIDieR checklist (Extended data, dataset 3) details the interventions used in each trial. There was a lot of heterogeneity in the focus of interventions.…”

“…Therefore, the risk of bias domain assessing outcome assessor’s awareness of intervention and its influence on outcome was rated as ‘probably no’ to avoid categorizing as high-risk of bias on this specific basis except for three articles which had mentioned as outcome assessor were blinded. Table 2 57 represents the results of the CASP Randomised Controlled Trial Standard Checklist. The majority of the studies showed limitations in allocation concealment, investigator and participant blinding, and reporting adverse effects and costs of intervention.…”

“…https://doi.org/10.6084/m9.figshare.25719021.v1. 55 Figshare: Description of outcome measures and results of intervention effectiveness for "Effect of family centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review". Data file 4: Description of outcome measures and results of intervention effectiveness.…”