Family-Provided Health Care for Children With Special Health Care Needs

Romley, John A.; Shah, Aakash Kaushik; Chung, Paul J.; Elliott, Marc N.; Vestal, Katherine; Schuster, Mark A.

doi:10.1542/peds.2016-1287

Cited by 87 publications

(58 citation statements)

References 51 publications

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“…Similar to the participants in our study, parents develop expertise in caring for their child’s complex needs, but often have difficulty obtaining needed information or guidance from health professionals [48]. In addition, parents provide a significant amount of unpaid care for their children [49,50]. Like our participants, other parents of children with medical complexity revealed the impact of the 24/7 parental care and care coordinator roles on family life, with reduced time for relationships with other children and spouses [17], and that these roles dominate their role as a parent [29].…”

Section: Discussionmentioning

confidence: 99%

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

Cady

Belew

2017

Children

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The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents still report their greatest challenge is communication gaps. When this occurs, parents assume responsibility for aggregating and sharing health information across providers and settings. A new primary-specialty care coordination partnership model for children with medical complexity works to address these challenges and bridge communication gaps. During the first year of the new partnership, parents participated in focus groups to better understand how they perceive communication and collaboration between the providers and services delivering care for their medically complex child. Our findings from these sessions reflect the current literature and highlight additional challenges of rural families, as seen from the perspective of the parents. We found that parents appreciate when professional care coordination is provided, but this is often the exception and not the norm. Additionally, parents feel that the local health system’s inability to care for their medically complex child results in unnecessary trips to urban-based specialty care. These gaps require a system-level approach to care coordination and, consequently, new paradigms for delivery are urgently needed.

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Section: Discussionmentioning

confidence: 99%

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

Cady

Belew

2017

Children

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“…They also lived below poverty line (52.8%). 4 A chronic disease were responsible for 42% of costs in health for this population. 5 In Brazil, children with chronic condition represent 9.1% in the age group until five years old, 9.7% among school-age children between six and 13 years old and 11% among adolescents from 14 to 19 years old of the total from the population.…”

Section: Introductionmentioning

confidence: 99%

Development care for children with special health needs in home care at Paraná - Brazil

et al. 2019

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Objective: To describe the development of care for children with special health needs in Paraná services of homecare. Method: Quantitative, descriptive, exploratory, and multiple case study was applied. Data were collected by telephone and e-mail, with professionals from the eight services of homecare of Parana, from October 2016 to January 2017. The data was treated with descriptive statistics analysis. Results: Among 35 children in homecare, 25.7% had cerebral palsy, 60% had a tracheostomy. The care provided by the services includes a management of tubes, administration of medication, changing dressings, caregiver guidance for tracheostomy suctioning and a management of diet. Conclusions and implications for practice: Services weaknesses were mainly related to low utilization of the singular therapeutic project and the counter-reference to primary care. The flow of successful practices are developed in the municipality of an isolated manner. Showing positive experiences promotes reflection and improvement of the work process of caring for children with special health needs in homecare.

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“…When families have difficulty accessing appropriate care for their child, they are often forced to attempt to provide care at home (Alfonso, Walker, Gupta, Telfair, & Colquit, 2015;Miller et al, 2015). Put another way, families caring for CSHCN lose an average of $3,200 in wages due to providing care for their child (Romley et al, 2017). Approximately 5.6 million CSHCN receive 1.5 billion hours each year from care provided by a family member, which in turn results in $17.6 billion in lost wages for the family (Romley et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Comparing impact on the family and insurance coverage in children with cerebral palsy and children with another special healthcare need

Schaible

Colquitt

Caciula

et al. 2018

Child

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Family-Provided Health Care for Children With Special Health Care Needs

Abstract: US families provide a significant quantity of health care at home to CSHCN, representing a substantial economic cost.

Cited by 87 publications

References 51 publications

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

Development care for children with special health needs in home care at Paraná - Brazil

Comparing impact on the family and insurance coverage in children with cerebral palsy and children with another special healthcare need

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