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Which components of medical homes reduce the time burden on families of children with special health care needs?

ABSTRACT: To examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health care at home.2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN), a population-based survey of 40,242 CSHCNs.NS-CSHCN is a cross-sectional, observational study. We used generalized ordered logistic regression, testing for nonproportional odds in the associations between each of five medical home components and time burden, controlling for insurance, child health, and sociodemographics.Medical home components were collected using Child and Adolescent Health Measurement Initiative definitions.Family-centered care, care coordination, and obtaining needed referrals were associated with 15-32 percent lower odds of time burdens arranging/coordinating and 16-19 percent lower odds providing health care. All five components together were associated with lower odds of time burdens, with greater reductions for higher burdens providing care.Three of the five medical home components were associated with lower family time burdens arranging/coordinating and providing health care for children with chronic conditions. If the 55 percent of CSHCNs lacking medical homes had one, the share of families with time burdens arranging care could be reduced by 13 percent.

SUBMITTER: Miller JE

PROVIDER: S-EPMC4369217 | biostudies-literature | 2015 Apr

REPOSITORIES: biostudies-literature

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Which components of medical homes reduce the time burden on families of children with special health care needs?

Miller Jane E JE Nugent Colleen N CN Russell Louise B LB

Health services research 20140806 2

<h4>Objectives</h4>To examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health care at home.<h4>Data sources</h4>2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN), a population-based survey of 40,242 CSHCNs.<h4>Study design</h4>NS-CSHCN is a cross-sectional, observational study. We used generalized ordered logistic regression, testing for no ...[more]

PMID: 25100200

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Project description:BackgroundFamilies with young children have faced serious challenges during the first lockdown as a result of the COVID-19 pandemic. In addition to remote working, parents have had to monitor their children's schoolwork and manage their daily lives. When one of the children also has neuro-developmental disorders, this results in an increased burden. We can therefore wonder how these families with one or more young children (under 6 years old) with special needs have experienced and dealt with this lockdown.Aim of the studyIn this context, the "COVJEUNENFANT" study focused more specifically on the subjective experience, as a parent, of those who cared for children with special needs (i.e., with developmental disorders, neurodevelopmental disorders, proven disabilities or chronic health conditions) compared to the general population. We wished to see if the consequences of the health crisis were significantly different from those perceived by respondents in the general population (n = 490) and if the sociodemographic structure of these families differed from those of other respondents.MethodsNinety three French families with at least one child under 6 years old and one with developmental difficulties or a chronic illness, from a cohort of 490 control families, participated in a web-based survey during the first lockdown, from the 28th April 2020 to 29th May 2020.ResultsAfter presenting the participants' sociodemographic characteristics, the results show that these French families (n = 93) are less wealthy than the control population "without special needs" (n = 397), have felt more pressures originating from their environment (families, friends, colleagues, media, social networks…), have suffered from more health issues (other than COVID-19), have taken more measures to protect themselves (social-distancing), and were less likely to feel happy. A significantly larger number of them lamented the lack of free time and voiced a larger need for information regarding children's education. However, their parental role was felt as being more satisfying and their family relations strengthened more than in the general population of participants.ConclusionIt is apparent that urgent prioritisation is needed in order to support and care for these families by continuing to provide care for their children in one way or another, and by ensuring that their need to adapt again does not exceed their own abilities and resources, especially as young children, who have high levels of requirements, are present in the home.

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Which components of medical homes reduce the time burden on families of children with special health care needs?

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Which components of medical homes reduce the time burden on families of children with special health care needs?

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