Willingness of Mothers of Individuals with ASD to Engage in Mobile Health Research

Background:

A new direction for healthcare research involves the collection of personal health information through mobile technology, such as apps and wearable devices (e.g. Fitbit). Information that is already collected from these mobile technologies can be utilized in a way that allows researchers to capture new and informative data that has not yet been studied.

Objectives:

• Engaging mothers of individuals with ASD in mobile health (mHealth) research.
• Comparing the willingness and attitudes of mothers of children and adolescents with ASD to participate in mHealth research.

Methods:

Maternal participants/caregivers in the Interactive Autism Network (IAN)—a community-powered research network that focuses on improving the lives of individuals with ASD and their families—were invited to complete an online questionnaire designed to determine caregiver willingness and attitudes toward engaging in mHealth research. Invited maternal caregivers had previously participated in a related IAN study. Mothers were divided into two groups based on the age of their child: Group A consisted of mothers of adolescents/young adults (ages 15-29) and Group B consisted of mothers of preschool/elementary-aged children (ages 3 -12). A few mothers fell into both categories and their responses were included in both groups. The overall response rate for the questionnaire was 52% (Group A=43.2%; Group B=59.5%), demonstrating successful re-engagement of IAN mothers, particularly among the younger group.

The questionnaire focused on maternal caregivers because of the correlation between maternal health and the health of their child with ASD. Individuals with ASD have been found to be less healthy overall than their counterparts in the general population; therefore, focusing on maternal health is an effective way to improve the health and well-being of individuals with ASD.

Analyses included crosstabs and t-tests for comparisons between the responses of the mothers of the children and teens/young adults with ASD.

Results:

622 mothers (Group A: n=231; Group B: n=391) completed the questionnaire. Regardless of age, mothers reported willingness to share mHealth data for research purposes.

• Mothers indicated willingness to share their health-data, especially if it allowed researchers to learn about the quality of healthcare, disease and prevention, and related issues (Group A=91.3%, Group B=94.6%; p=0.080).
• Mothers in each age group reported a preference for control over what and with whom their mHealth information was shared (Group A=96.5%, Group B=96.3%; p=0.882). Similarly, they wanted to know who accessed their data. <1% in each group reported that they did not care who accessed it (p=0.559).
• Younger mothers more willingly embraced newer technologies to share their health data, including sharing GPS location (Group A=57.4%, Group B=62.7%; p =0.019).

See Tables 1 and 2 for more details.

Conclusions:

Mothers of individuals with ASD were willing to share their mHealth data with researchers with the promise of anonymity and a level of control over their information. Younger mothers were more willing to use newer technologies to do so. With this knowledge in mind, it is possible to begin implementing mHealth studies that collect such information in a way that cultivates the highest potential for completion.