Associations of Family-Centered Care with Health Care Outcomes for Children with Special Health Care Needs

Kuo, Dennis Z.; Bird, T.M.; Tilford, John M.

doi:10.1007/s10995-010-0648-x

Cited by 122 publications

(121 citation statements)

References 41 publications

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“…Hence, it is important that such type of care be inserted into healthcare policies, aiming at both integrating the care services in all healthcare levels, (11) and improving the quality of life of the families and their children.…”

Section: Discussionmentioning

confidence: 99%

Apoio social a famílias de crianças com paralisia cerebral

et al. 2015

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Objective: To describe the experience of the families of children with cerebral palsy concerning their social support network. Methods: Qualitative research carried out with 19 families of children with cerebral palsy. Focal group sessions were performed and statements were recorded, thoroughly transcribed and assessed by the thematic analysis technique. Results: The following thematic categories emerged: Experience of the family in caring for the child with cerebral palsy, and Frail social support concerning family bonds. Conclusion: The social support network of the families of children with cerebral palsy is basically comprised of family members. Families undergo changes in their daily life and experience unfavorable feelings, seeking in the spiritual realm the hope to cope with adversities. ResumoObjetivo: Descrever a experiência da família de criança com paralisia cerebral em relação à rede social de apoio. Métodos: Pesquisa qualitativa realizada com 19 familiares de criança com paralisia cerebral. Foram realizadas sessões de grupo focal e os depoimentos foram gravados, transcritos na íntegra e analisados pela técnica de análise categorial temática. Resultados: Emergiram as categorias temáticas: experiência da família no cuidado com a criança com paralisia cerebral e apoio social frágil nos laços familiares. Conclusão: A rede social de apoio da família da criança com paralisia cerebral é constituída por membros da própria família. Esta passa por mudanças em sua rotina diária vivencia sentimentos adversos e busca na dimensão espiritual o acalento para as adversidades encontradas.

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Section: Discussionmentioning

confidence: 99%

Apoio social a famílias de crianças com paralisia cerebral

et al. 2015

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“…18 It has also been reported that children with special health care needs experienced significantly fewer adverse family financial and economic impacts if the affected child has a medical home or a family-centered system of health care. 13,19 Similarly, children with special health care needs who had access to family-centered care in a medical home and had adequate health insurance scored higher on a latent-variable well-being construct that was strongly predictive of family financial problems and negative financial impact. 20 This study has limitations.…”

Section: Discussionmentioning

confidence: 99%

A National Profile of Health Care and Family Impacts of Children With Muscular Dystrophy and Special Health Care Needs in the United States

et al. 2011

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We used the [2005][2006] National Survey of Children with Special Health Care Needs to compare 3 types of outcomes between children with and those without parental reported muscular dystrophy: (1) functional limitations; (2) health care experiences in terms of the 5 components of a medical home; and (3) family impacts, including financial or out-of-pocket costs and parental employment and time use. We used weighted logistic regression to examine their associations with muscular dystrophy after adjustment for socio-demographic characteristics. Among children with special health care needs, children with reported muscular dystrophy were much more likely to have difficulties with ambulation and self-care. They were more likely to have family members who reported financial problems, reduced or stopped employment, and spent more than 10 hours weekly providing or coordinating care. Muscular dystrophy was not associated with the likelihood of having a medical home after adjustment for socioeconomic status and other socio-demographic characteristics.Keywords muscular dystrophy; National Survey of Children with Special Health Care Needs; medical home; family impact; Duchenne; Emery-DreifussThe muscular dystrophies are a diverse group of genetic disorders characterized by progressive muscle wasting and weakness. They vary with regard to the gene involved, Reprints and permission: sagepub.com/journalsPermissions.nav Corresponding Author: Lijing Ouyang, PhD, 1600 Clifton Road, NE, Mail Stop E-88, Atlanta, Georgia, 30329, louyang@cdc.gov. Authors' ContributionsLijing Ouyang, Scott Grosse, Michael Fox, and Julie Bolen contributed to the study design, interpretation of the data and the results, and critical review and revision of the manuscript. Lijing Ouyang analyzed the data. All authors contributed to and have approved the final manuscript. Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Ethical ApprovalNot applicable, analysis of public use data. HHS Public Access Author Manuscript Author ManuscriptAuthor ManuscriptAuthor Manuscript population of children with special health care needs 0-17 years of age. Screener weight is on the screener file and is used to produce estimates that are representative of children nationally. The weighted overall response rate for special needs interviews was 56.1%. Details of the survey methods are described elsewhere. 5 Description of VariablesChildren with special health care needs with muscular dystrophy were identified on the basis of the question, "To the best of your knowledge, does your child currently have muscular dystrophy?" Possible answers include yes, no, don't know, or refused. No questions about the specific form of muscular dystrophy were included in the survey. We use 3 variables to measure functional ability, including whether the surveyed child, relative to other children of their age, experienced any difficulty with coordination or moving a...

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“…A investigação empírica tem comprovado que esta abordagem traz importantes benefícios para a adaptação psicológica das crianças (Kuo, Bird, & Tilford, 2011;Stein & Jessop, 1984), bem como dos pais, nomeadamente a redução do sofrimento emocional e da sintomatologia depressiva (King, King, Rosenbaum, & Goffin, 1999;Stein & Jessop, 1984) e ansiosa (Ireys, Chernoff, DeVet, & Kim, 2001;Stein & Jessop, 1984). Esta abordagem parece ainda promover a satisfação com os cuidados de saúde formais (King et al, 1999) e a redução dos níveis de sobrecarga dos cuidadores familiares (Kuo et al, 2011).…”

Section: Os Cuidados Centrados Na Família Nas Unidades Pediátricasunclassified

“…Esta abordagem parece ainda promover a satisfação com os cuidados de saúde formais (King et al, 1999) e a redução dos níveis de sobrecarga dos cuidadores familiares (Kuo et al, 2011). Também no contexto da oncologia pediátrica, existe evidência de que os CCF se associam a uma melhor qualidade de vida das crianças ) e dos A maioria dos estudos no âmbito dos CCF tem focado o seu impacto psicossocial em pais e crianças (Harrison, 2010).…”

Section: Os Cuidados Centrados Na Família Nas Unidades Pediátricasunclassified

“…Quando o estado de saúde é mais grave (Kuo et al, 2011) ou tem maior impacto na atividade da criança (Strickland et al, 2004), os pais tendem a avaliar os cuidados como menos centrados na família. Dix e colaboradores (2009) verificaram que pais de crianças em recidiva ou com pior prognóstico percecionavam os cuidados como menos centrados na família.…”

Section: Os Cuidados Centrados Na Família Nas Unidades Pediátricasunclassified

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Caracterização dos cuidados centrados na família em oncologia pediátrica em Portugal

Salvador

Crespo

Santos

et al. 2016

Psychol. Community Health

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ResumoObjetivo: Este estudo teve como objetivo caracterizar as perceções parentais dos Cuidados Centrados na Família (CCF) em função de fatores sociodemográficos e clínicos no contexto da oncologia pediátrica em Portugal. Results: Both parents' and children's age were associated with higher scores on both domains of FCC (Service and General Information). Multivariate analyses showed that parents of children (vs. adolescents), parents with a higher education (vs. secondary or less) and parents of children receiving treatment (vs. completed treatment) reported lower perceptions of FCC (Services and General Information). No differences were found according to time since diagnosis, number of hospitalizations and intensity of treatment. Conclusion: Findings suggest that younger parents with higher education, parents of younger children and parents of children receiving treatment may be at higher risk for perceptions of formal care as less family-centered.

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Associations of Family-Centered Care with Health Care Outcomes for Children with Special Health Care Needs

Cited by 122 publications

References 41 publications

Apoio social a famílias de crianças com paralisia cerebral

Apoio social a famílias de crianças com paralisia cerebral

A National Profile of Health Care and Family Impacts of Children With Muscular Dystrophy and Special Health Care Needs in the United States

Caracterização dos cuidados centrados na família em oncologia pediátrica em Portugal

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