Toward digital caregiving network interventions for children with medical complexity living in socioeconomically disadvantaged neighborhoods.

Abstract

Background: To be usable, useful, and sustainable for families of children with medically complex conditions (CMC), digital interventions must account for the complex sociotechnical context in which these families provide care. CMC experience higher neighborhood socioeconomic disadvantage than other child populations, which has associations with CMC health. Neighborhoods may influence the structure and function of the array of caregivers CMC depend upon (ie, the caregiving network).

Objective: Explore the structures/functions and barriers/facilitators of caregiving networks for CMC living in socioeconomically disadvantaged neighborhoods to inform the design of digital network interventions.

Methods: We conducted 6 virtual focus groups with caregivers of CMC living in socioeconomically disadvantaged neighborhoods from 6 sites. Three groups included "primary caregivers" (parent/guardian), and 3 groups included "secondary caregivers" (eg, other family member, in-home nurse). We analyzed transcripts using thematic analysis.

Results: Primary (n = 18) and secondary (n = 9) caregivers were most often female (81%) and reported a mean (SD) caregiving network size of 3.9 (1.60). We identified 4 themes to inform digital network intervention design: (1) Families vary in whether they prefer to be the locus of network communication, (2) external forces may override caregivers' communication preferences, (3) neighborhood assets influence caregiving network structure, and (4) unfilled or unreliably filled secondary caregiver roles creates vulnerability and greater demands on the primary caregiver.

Discussion and conclusion: Our results provide a foundation from which digital network interventions can be designed, highlighting that caregiving networks for CMC living in socioeconomically disadvantaged neighborhoods are influenced by family preferences, external forces, and neighborhood assets.