Evidence for Family-Centered Care for Children With Special Health Care Needs: A Systematic Review

doi:10.1016/j.acap.2010.12.014

Academic Pediatrics

Volume 11, Issue 2, March–April 2011, Pages 136-143.e8

https://doi.org/10.1016/j.acap.2010.12.014 Get rights and content

Abstract

Objective

Family-centered care (FCC) has received widespread endorsement for use in care in the United States. In this study, we conducted a systematic review of evidence for FCC focusing specifically on family-provider partnership as the activity that constitutes FCC.

Methods

We found and reviewed articles from the medical, nursing, psychology, and sociology literature spanning 1986 to 2010. We also reviewed articles obtained through related references and through recommendations from key informants. Four sets of terms were used to search, including FCC, child/adolescent, children with special health care needs (CSHCN, defined broadly or by condition), and a relevant outcome.

Results

Twenty-four studies met the review criteria. Eight were cross-sectional studies from the National Survey of Children With Special Health Care Needs, and 7 were reports of randomized, controlled trials. Of the 24 articles reviewed, 13 examined populations of CSHCN or similar populations, 6 examined children with asthma, and the remaining studied children with other specific conditions. We found positive associations of FCC with improvements in efficient use of services, health status, satisfaction, access to care, communication, systems of care, family functioning, and family impact/cost. There was little available evidence, however, for some outcomes, including cost and transition.

Conclusions

The available evidence suggests that FCC is associated with improved outcomes for CSHCN. With positive findings for most of the studies reviewed here and the compelling arguments for FCC, we recommend the use of this approach by individuals and organizations.

Section snippets

Organization of Review

Definitions of FCC include a variety of specific activities. We used FCC-related statements by the MCHB3, 4 and AAP,⁵ input of the project advisory committee (comprising CSHCN researchers, family members, and health care providers), and input from reviewers to identify the “family-provider partnership” as our functional definition of FCC for this review. This decision parallels the operationalization of FCC in the National Survey of Children with Special Health Care Needs (NSCSHCN). To be

Results

The initial searches yielded 4886 articles that met the search criteria and had abstracts, 2828 of which were based in the United States. From this list, 2 authors reviewed all titles and/or abstracts. They then identified 98 articles to review in full. We included 24 in this review. These articles met the search criteria and the quality score criterion. Seven of the articles were based on randomized, controlled trials (RCTs), 11 were based on cross-sectional associations with no intervention,

Discussion

This review found evidence that FCC is associated with improved outcomes in several domains. We found these associations among different populations of CSHCN, operationalizations of FCC, and outcomes. We did not find evidence that FCC was associated with poorer outcomes. For most studies, there was at least one association of FCC with a positive outcome. Most studies measured several outcomes, and some studies had mixed findings, with only a few having only nonsignificant or negative findings.

Acknowledgment

We thank our funders at the Maternal and Child Health Bureau, cooperative agreement 5 U53MC04473-03-00, members of our advisory group, and Jill Hurson.

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Material Hardship, Protective Factors, Children's Special Health Care Needs, and the Health of Mothers and Fathers
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Parents of children with special health care needs (CSHCN) are at risk of poorer health outcomes. Material hardships also pose significant health risks to parents. Little is known about how protective factors may mitigate these risks and if effects are similar between mothers and fathers.
This was a cross-sectional survey study conducted using the US 2018/2019 National Survey of Children’s Health, including parents of children 0 to 17 with income <200% of the federal poverty level. Separately, for parents of children with and without special health care needs (N-CSHCN), weighted logistic regression measured associations between material hardship, protective factors (family resilience, neighborhood cohesion, and receipt of family-centered care), and 2 outcomes: mental and physical health of mothers and fathers. Interactions were assessed between special health care needs status, material hardship, and protective factors.
Sample consisted of parents of 16,777 children; 4440 were parents of CSHCN. Most outcomes showed similar associations for both mothers and fathers of CSHCN and N-CSHCN: material hardship was associated with poorer health outcomes, and family resilience and neighborhood cohesion associated with better parental health outcomes. Family-centered care was associated with better health of mothers but not fathers. Interaction testing showed that the protective effects of family resilience were lower among fathers of CSHCN experiencing material hardship.
Family resilience and neighborhood cohesion are associated with better health outcomes for all parents, though these effects may vary by experience of special health care needs, parent gender, and material hardship.
The barriers to family-centered care in the pediatric rehabilitation ward: A qualitative study
2023, Journal of Pediatric Nursing
Family-centered care (FCC) is one of the fundamental principles of care provision to children with disability (CWD). It is based on the collaboration of healthcare providers, patients, and families. However, there is limited information about the barriers to FCC in pediatric rehabilitation settings in Iran. This study aimed at exploring the barriers to FCC in the pediatric rehabilitation ward.
This descriptive qualitative study was conducted in 2022. Participants were nine rehabilitation staff and twelve mothers of hospitalized CWD purposively selected from the pediatric rehabilitation ward of hospital Rofeideh, Tehran, Iran. Rehabilitation staff were three nurses, a head nurse, a nursing manager, a medical specialist, a social worker, a physical therapist, and an occupational therapist. Eleven semi-structured interviews and three focus group discussions were conducted for data collection, and conventional content analysis proposed by Graneheim and Lundman (2004) was used for data analysis.
The three main categories of the barriers to FCC in the pediatric rehabilitation ward were family-related barriers (subcategories: knowledge about child rehabilitation, sociocultural background, and participation), staff-related barriers (subcategories: knowledge, ethical concerns, and collaboration), and organizational barriers (subcategories: factors related to FCC policies, managerial factors, environmental factors, and factors related to the coronavirus disease 2019 pandemic).
The barriers to FCC in the pediatric rehabilitation ward are very diverse due to the long-term course of child disability and long-term interaction of families with rehabilitation centers. Data collection from both families and rehabilitation staff helped acquire an in-depth understanding about these barriers. More in-depth explorations of family-related barriers such as sociocultural factors are essential to determine the reasons for family resistance to healthcare providers' recommendations to develop more effective care plans.
Effect of kangaroo care applied by mothers and fathers in premature infants: A crossover study
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This study aimed to compare kangaroo mother care (KMC) and kangaroo father care (KFC) with a crossover study in terms of physiological parameters and stress signs in preterm infants.
In this nonblinded, randomized, crossover trial, 30 preterm infants (<37 weeks gestation, <1500 gr birth weight) were randomly allocated for study. Preterm infants were given kangaroo care for 1 h a day, from the mother and father, alternately. Physiological parameters (temperature, HR, RR, O₂ saturation, BP) were recorded before, during, and after KC. Parents’ anxiety levels were evaluated before and after KC.
During KC time points, both KMC and KFC results showed that the physiological parameters of infants were within the normal range. But in KMC, O₂ saturation was higher than that in KFC at 30- and 60-min during KC (p < 0.05). In KFC, systolic BP (at 30 min) and body temperature (at 60 min) were higher than those in KMC (p < 0.05).
Findings suggest that both KMC and KFC improve physiological parameters of babies and ensure stability.
Disparities in Family-Centered Care Among US Children and Youth with Special Healthcare Needs
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Children and youth with special healthcare needs
2023, Encyclopedia of Child and Adolescent Health, First Edition
Children and youth with special health care needs (CYSHCN) are defined as children “who have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally” (McPherson et al., 1998). This definition is intentionally inclusive for the purpose of public health research, healthcare policy, and providing services for this at-risk population. CYSHCN encompass a wide range of abilities and needs.
Nurse experiences of partnership nursing when caring for children with long-term conditions and their families: A qualitative systematic review
2024, Journal of Clinical Nursing

View all citing articles on Scopus

: The authors have no conflicts of interest to disclose.

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New Research on Children With Special Health Care NeedsEvidence for Family-Centered Care for Children With Special Health Care Needs: A Systematic Review

Abstract

Objective

Methods

Results

Conclusions

Section snippets

Organization of Review

Results

Discussion

Acknowledgment

Ambul Pediatr

Acad Pediatr

Ambul Pediatr

J Pediatr Health Care

J Pediatr Nurs

A new definition of children with special health care needs

Pediatrics

American Academy of Pediatrics. Family-centered care and the pediatrician's role

Pediatrics

American Academy of Pediatrics Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The medical home

Pediatrics

A family-centered, community based system of services for children and youth with special health care needs

Arch Pediatr Adolesc Med

The feasibility of creating a checklist for the assessment of the methodological quality both of randomized and non-randomized studies of health care interventions

J Epidemiol Community Health

Long-term mental health effects of a pediatric home care program

Pediatrics

Improving asthma outcomes and self-management behaviors of inner-city children: a randomized trial of the Health Buddy interactive device and an asthma diary

Arch Pediatr Adolesc Med

Putting the pieces together: preliminary efficacy of a family problem-solving intervention for children with traumatic brain injury

J Head Trauma Rehabil

Intervening to improve communication between parents, teachers, and primary care providers of children with ADHD or at high risk for ADHD

J Attend Disord

The Pediatric Alliance for Coordinated Care: evaluation of a medical home model

Pediatrics

Comprehensive primary care for children with special health care needs in rural areas

Pediatrics

New Research on Children With Special Health Care Needs
Evidence for Family-Centered Care for Children With Special Health Care Needs: A Systematic Review