Family‐centred care for children and young people with cerebral palsy: results from an <scp>Italian</scp> multicenter observational study

Molinaro, Anna; Fedrizzi, Ermellina; Calza, Stefano; Pagliano, Emanuela; Jessica, G; Fazzi, Elisa

doi:10.1111/cch.12449

Cited by 18 publications

(11 citation statements)

References 33 publications

(62 reference statements)

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“…Providing general information consistently has the lowest scale score, as found in this and other large studies, indicating that this scale (and perhaps these activities) has the most room for improvement. This finding is present across cultures, regions and populations (Almasri et al, 2018; Cunningham & Rosenbaum, 2014; Molinaro et al, 2017). Providing general information is an area for which common strategies can be developed for service programmes with similar healthcare models and evaluation goals.…”

Section: Discussionmentioning

confidence: 93%

Family‐centredness of a provincial autism programme: A quality assurance evaluation using the Measure of Processes of Care

Williams

Teplicky

Rosenbaum

et al. 2021

Child

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Background University researchers worked with 13 children's service provider agencies to conduct a programme evaluation of parents' perceptions of the family‐centredness of service spanning 3 years (January 2015 to May 2018). Parents of Ontario children with autism spectrum disorder (ASD) receiving applied behaviour analysis (ABA) programming reported outcomes of their experience of family‐centred services (FCS) using the 20‐item Measure of Processes of Care (MPOC‐20). The purpose of this paper is to report the outcomes of the quality assurance evaluation of FCS as measured by MPOC‐20 among parents of children with ASD receiving ABA services. Methods A total of 11 490 surveys (from 21 571 potential respondents [53.3%]) were completed. Means and proportions were used to describe the demographics, service utilization and MPOC‐20 scores with its 7‐point Likert scales, ranging from 1 (lowest) to 7 (highest). Results The overall provincial MPOC scores were consistent over the 3 years, ranging from very good to excellent, with Respectful and Supportive Care (n = 11 348, truex¯ = 6.27, SD = 0.83) reporting the highest scale score and Providing General Information (n = 10 485, truex¯ = 5.51, SD = 1.43) the lowest. Conclusion Given the consistently high MPOC scores found in this and other programme evaluations, it is believed that health service providers have caught up to the FCS quality standards proposed 30 years ago. For this reason, the developers of MPOC are now planning a revision of the measure to address its ceiling effects and to integrate contemporary perspectives on family‐centred practice for children and their families.

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Section: Discussionmentioning

confidence: 93%

Family‐centredness of a provincial autism programme: A quality assurance evaluation using the Measure of Processes of Care

Williams

Teplicky

Rosenbaum

et al. 2021

Child

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“…Using these principles of care has been found to optimise outcomes for parents and children (King & Chiarello, 2014;Novak & Berry, 2014). However, the implementation of these principles is not always fully achieved in practice, and caregivers have reported service care to be lacking in information-sharing and respectful communication (Darrah et al, 2012;McDowell et al, 2015;Molinaro et al, 2017). Families also differ in the importance or relevance they place on different aspects of a service (Terwiel et al, 2017) so this suggests that individual circumstances need to be considered when providing family-centred health care support.…”

Section: Discussionmentioning

confidence: 99%

Caregivers’ Feeding Experiences and Support of Their Child with Cerebral Palsy

et al. 2021

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Feeding difficulties are often reported in children with cerebral palsy (CP) and are associated with caregiver stress. This study explored the feeding experiences and support of caregivers with children who have CP. A qualitative approach was used where semi-structured telephone interviews were conducted and audio recorded. Thematic analysis was used to code and analyse the transcribed interview data from the eleven mothers that participated. Four major themes were identified from the data: Child-centred world, Making decisions, Knowing their child, and Seeking and receiving support. Caregivers knew their child’s unique needs and made daily decisions around feeding based upon the child’s feedback and changing condition. Family support was viewed as important, although the caregivers still reported feeling stressed. Health professional support varied from “amazing” to “frustrating”, which contributed to the caregivers’ stress. However, no single support strategy was appropriate as their needs or preferences varied. It is recommended that health professionals take an individualised partnership approach with caregivers and their child, with particular attention to those caregivers who lack a friend or family support and those who are physically isolated.

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“…To identify weaknesses in service delivery, we checked for items that received scores varying from 1---4 (''not at all'' to ''to a moderate extent'') from at least 33% of respondents. 29 To compare our results to international data, we also computed aggregated mean ratings and 95% confidence intervals (CIs) from a recent meta-analysis of studies that used the MPOC-20 6 and from 15 other studies 18,26,27,30---40 that used the MPOC-SP. The Statistical Package for Social Sciences version 18.0 (2011) was used for all analyses.…”

Section: Discussionmentioning

confidence: 99%