Self-Care Needs and Technology Preferences Among Parents in Marginalized Communities: Participatory Design Study

JMIR Pediatr Parent. 2021 Jun 22;4(2):e27542. doi: 10.2196/27542.

Abstract

Background: Ten million parents provide unpaid care to children living with chronic conditions, such as asthma, and a high percentage of these parents are in marginalized communities, including racial and ethnic minority and low-income families. There is an urgent need to develop technology-enabled tailored solutions to support the self-care needs of these parents.

Objective: This study aimed to use a participatory design approach to describe and compare Latino and non-Latino parents' current self-care practices, needs, and technology preferences when caring for children with asthma in marginalized communities.

Methods: The participatory design approach was used to actively engage intended users in the design process and empower them to identify needs and generate design ideas to meet those needs.

Results: Thirteen stakeholders participated in three design sessions. We described Latino and non-Latino parents' similarities in self-care practices and cultural-specific preferences. When coming up with ideas of technologies for self-care, non-Latino parents focused on improving caregiving stress through journaling, daily affirmations, and tracking feelings, while Latino parents focused more on relaxation and entertainment.

Conclusions: Considerations need to be taken beyond language differences when developing technology-enabled interventions for diverse populations. The community partnership approach strengthened the study's inclusive design.

Keywords: asthma; caregiving; culturally appropriate technology; marginalization; minority groups; parents; qualitative research; self-care.