Abstract
BackgroundTen 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.ObjectiveThis 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.MethodsThe 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.ResultsThirteen 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.ConclusionsConsiderations 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.
Highlights
One in four children in the United States has chronic health conditions, such as asthma and diabetes, and those who reside in marginalized communities, including racial and ethnic minority and low-income families, are disproportionately affected [1,2,3,4]
We invited members of the coalition who were not parents of children with asthma to participate in a clinical expert participatory design session
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
Summary
One in four children in the United States has chronic health conditions, such as asthma and diabetes, and those who reside in marginalized communities, including racial and ethnic minority and low-income families, are disproportionately affected [1,2,3,4]. The responsibilities and demands of parents of these children are 24/7 and multifaceted (eg, monitor symptoms, administer medications or therapies, and nighttime care) Over time, these responsibilities and demands take a toll on the physical and mental health and work of parents and family relationships, and contribute to the symptoms of fatigue, distress, disturbed sleep, and anxiety [5]. These responsibilities and demands take a toll on the physical and mental health and work of parents and family relationships, and contribute to the symptoms of fatigue, distress, disturbed sleep, and anxiety [5] These symptoms are negatively associated with parent well-being (quality of life and family and social function), which impacts the health outcomes of children [6]. 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
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