5Minutes4Myself: Developing a Feasible,Tailored Wellness Program for Caregivers of Children With Autism

PURPOSE: Decades of research have outlined the negative impacts of caregiving, especially for parents of children with autism, including increased stress, depression, fatigue, and alterations of the neuroendocrine system responses. The intensity and pervasive time demands of this caregiving have been shown to limit caregivers’ opportunities to participate in leisure, rest, and other wellness-promoting activities. The aim of this project was to design and refine a wellness promotion program that was feasible, practical, and tailored to the lifestyles of caregivers of children with autism. This presentation describes the development and evolution of 5Minutes4Myself, an occupation-based wellness program.

DESIGN AND METHOD: In this participatory action research project, an iterative process with several cohorts of caregivers (N = 12) was used to develop and refine a wellness program. Caregivers of children ages 8–21 yr with autism were recruited via local clinics and an autism conference and were included if they were the primary caregiver and committed to participate in a program. This process included (1) a review of wellness and lifestyle change evidence, (2) multiple caregiver focus groups exploring lifestyles and preferences for interventions, (3) program implementation, and (4) program evaluation focus groups. Focus group data were transcribed verbatim and analyzed using a constant comparative method.

RESULTS: Based on the strength of the evidence, we decided to use motivational interviewing (MI) and positive psychology interventions. We developed program ideals and asked caregivers to reflect on them. The first cohort of focus group participants affirmed these principles and noted that the program should give primacy to caregivers’ health (“take your oxygen first”), address commonly experienced limits to motivation (fatigue and loss over time), inspire caregivers to aspire to wellness goals, support next steps, and provide accountability. Based on these data, the intervention program was designed. To support envisioning their goals, participants used the Activity Card Sort and were individually coached using an MI approach. Over 4–6 mo, participants used an iPad app to provide “thinking” and “doing” programming, received ongoing MI coaching, and checked in at least monthly.

In evaluating the program, the first cohort noted that (1) goals evolved over time and the Activity Card Sort was useful in gauging goal importance and aiding in goal selection; (2) the iPad program was deemed overly complex, and a simpler phone-based program with push reminders, goal checks, and awards was suggested; (3) a specific mindfulness program should be provided on the app, and (4) MI coaching during check-ins was useful in clarifying goals and providing accountability and filled an unmet need for social support.

For the second cohort, we developed a phone-based app using the principles identified as ideal by the first cohort. The second cohort completed the revised program using the newly developed phone app and evaluated the program’s feasibility. They affirmed the usefulness of program as designed, the app’s usability, and impact of the mindfulness podcasts on their lives and wellness.

CONCLUSION: In this participatory action research project, we developed and refined a feasible tailored wellness promotion program based on evidence and caregivers’ lifestyles and needs. This program uses an occupation-based assessment and evidence-based interventions to support wellness; it creates a road map for other occupation-based wellness programs.

References

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Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134, E454–463. https://doi.org/10.1542/peds.2013-3164

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. https://doi.org/10.1007/s10803-012-1604-y

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