713 - Design and pilot of an instrument to survey caregivers of children with special healthcare needs about quality of self-management supports

Poster Number: 713
Publication Number: 713.105

Rachel Willard-Grace, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Abby Cabrera, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Noemi A. Spinazzi, UCSF Benioff Children's Hospital Oakland, Oakland, CA, United States; Amy Whittle, UCSF Benioff Children's Hospital San Francisco, San Francisco, CA, United States; Anjana E. Sharma, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Allison Gray, Lucile Packard Foundation for Children's Health, Palo Alto, CA, United States; Holly KM. Henry, Lucile Packard Foundation for Children's Health, Palo Alto, CA, United States; Tali Klima, Practical Research Solutions, Sunnyvale, CA, United States

Background: Children with special healthcare needs (CSHCN) have chronic conditions that require extensive healthcare and supportive services. Self-Management Support (SMS) for caregivers of CSHCN refers to assistance to increase families’ skills and confidence in managing their children’s health. Little is known of the extent to which SMS is provided in care for CSHCN, and there are no measures tailored to this population. 

Objective: We sought to develop an instrument accessible to families with limited health literacy to assess SMS in pediatric practices.

Design/Methods: A 28-item instrument assessing SMS across 6 domains, with a response scale of 1-4, was co-designed by our research team, caregivers of CSHCN, and pediatric healthcare providers. After user testing, we conducted a pilot study of feasibility/acceptability with 52 caregivers in two urban, academic primary care pediatric practices.

Results:

Among people approached in the study, 8 (10%) declined participation, most of these because of time constraints. All caregiver respondents lived under 400% of the Federal Poverty Level, and 40% completed the survey in Spanish. Ages of their children were spread between 0-5 years (33%), 6-10 years (38%), and 11-17 years (29%). Most (87%) of the children had a physical or developmental disability, more than half (56%) had a chronic condition, and 48% had a behavioral health diagnosis. Overall, respondents reported strong agreement that their sites provided the SMS identified in the study, with a mean score of 3.49 (SD=.60). There were no significant differences in SMS by language preference of the caregiver, diagnosis category, level of impairment, or years since diagnosis. Higher SMS scores were associated with greater reported self-efficacy, greater trust in the provider, and having more hospital and ED visits, which appears to result in greater support provided to families.

Conclusion(s): Assessment of SMS is a vital step to improve care delivery for CSHCN. The SMS instrument developed in this study appeared to be accessible to caregivers across health literacy levels and language groups. A larger survey across California anticipated in 2023-24 will provide greater understanding of the degree to which families are receiving support and help identify subgroups or SMS domains in need of more support. Results from this statewide survey will help clinical leaders, policy makers, and funders focus on development of resources and processes in clinic that are the most valuable to families of CSHCN.