Does Perception of Family Centered Care Predict Satisfaction with Medical Home Services in Families of Children with Special Health Care Needs?

Purpose:Social workers endorsing family-centered care (FCC) in medical homes for children with special health care needs (CSHCN) recognize the importance that parent satisfaction with health care plays in these families’ ability to ensure the well-being of CSHCN (Eppley et al., 2010). Contemporary research shows that although links between FCC and health outcomes for CSHCN can be positive (Kuo, Bird, & Tillford, 2011), and it is a national health care objective that all CSHCN have access to quality services (Lu, 2014), gaps exist between parents and professionals on benefits (Carbone et al., 2010) and disparities in medical homes (Singh et al., 2009), and lack of comprehensiveness in delivering health care (Bellin et al., 2011). The purpose of this study was to investigate whether family perceptions of FCC in (a) family-pediatric-provider partnership, (b) care-setting practices, and (d) community system of coordinated care, predict family satisfaction with medical homes for CSHCN. Based on the life course theory for optimizing developmental trajectories (Halfon et al., 2014), and promoting healthy family functioning, understanding family satisfaction with care, may help to mitigate risks, and offer intervention-opportunities for promoting health and wellness in CSHCN.

Method: An original exploratory survey was implemented from 2010-2012 in a major U.S.-city. Using key-informant recruiters and snowball sampling strategies, 122 families met study-criteria and provided Informed Consent, approved by university-IRB.  The study used a structured Family-Centered Care Self-Assessment questionnaire, available from Family Voices, a leading advocacy organization for CSHCN, with additional questions on medical home services, and demographics. Parents’ provided their answers anonymously in around 40 minutes. Analytically, hierarchical logistic regression predicted the likelihood of satisfaction with FCC in medical homes, while controlling for demographics.

Results:Respondents were primarily children’s bio-mothers of whom 69% lived with a spouse-partner; 75% were aged between 31 and 60 years; 38% had at least a high school education; 64% had income below city-median $80K; 34% were African American; 33% White, and 33% Hispanic and Other Non-Caucasians.  Of CSHCN, 33% were boys; 87% had siblings; 34% had Autism, 21% ADHD, 16% cerebral palsy, and 38% had a sibling with disabilities. The final hierarchical LR-model (Chi-Square (8) = 91.55, p < .001) correctly classified 92.5% of cases, met criteria for Hosmer and Lemeshow test (p=0.380), and explained 74.8% of variance (Nagelkerke R-square) in outcome-satisfaction (31% satisfied). Results demonstrated that families’ satisfaction was significantly predicted by increase in FCC derived from family-provider partnership [Adjusted OR = 1.45 (95% CI: 1.20 – 1.75)]; and community care-coordination [Adjusted OR = 1.42, (95% CI: 1.15 – 1.76)]. Satisfaction was compromised when problems arose in care-settings practices and policies [Adjusted OR = 0.815, (95% CI: 0.706 – 0.940], sibling was CSHCN [(Adjusted OR = 0.146, 95% CI: 0.026 – 0.824)], and respondent reported non-white ethnicity [(Adjusted OR = 0.455, 95% CI: 0.209 – 0.995)].

Implications:CSHCN and their families have multifaceted health and habilitative needs that point to ongoing need for creating strong culturally-sensitive partnerships among parents and health-providers, both medical and interdisciplinary. Study limitations, and practice and policy recommendations are presented.