Journal of Pediatric Care

Description

The purpose of this study was to compare the effectiveness of recruiting parents of autistic children for an online survey via phone, email or text message. An initial mailed letter and an email were simultaneously sent to a sample of 1,624 parents of autistic children from an integrated health system in Southern California for the purpose of conducting baseline survey outreach in this randomized study. After that, participants were placed in one of three follow-up recruitment groups at random: Phone call, text message, or email in multivariate models, we compared the effectiveness of recruitment strategies. When it came to getting a survey response, each of the three follow-up strategies worked just as well. Parents of girls were less likely than parents of boys to respond to outreach efforts for the survey. Parents of children can be effectively recruited for research using a variety of survey recruitment methods, including digital and mobile strategies. It can be difficult to encourage families of children diagnosed with autism to participate in research. Overt exclusion from certain types of studies can result from assumptions about autistic people, such as their communication difficulties, social function, or disability status. Parents of autistic children and autistic individuals may be reluctant to identify themselves for research participation due to general negative attitudes toward intellectual disabilities and autism. According to a few studies, parents of autistic children may be particularly motivated to participate in genetic autism research, but not necessarily in other forms of autism research. Parents may be able to use their involvement in genetic research to alleviate guilt, contribute to improved understanding and awareness of autism, encourage family planning and have hope for scientific advancements in the diagnosis.

Treatment of Autism

Evidence-based strategies for increasing the participation of parents of autistic children in survey research are poorly understood in autism research. Given their long-standing under representation in autism research and evidence for disparities in real-world autism service delivery, recruitment of racial/ethnic minorities and girls in autism research is a particularly high priority for methodological studies. According to a recent survey of parents of autistic children, there was some demographic variation in preferences for survey participation modalities, but overall, attitudes toward participating in research were generally positive. The majority of families in the survey said they wanted to be contacted for research via email (70%) and the web (83%); however, 75% of Hispanic parents said they preferred to be contacted by phone. Non-White parents, parents with lower educational attainment, single-parent households and parents of multiple autistic children had lower responses in other studies of online survey participation in autism research. Values and a desire to contribute to new knowledge can influence survey research participation, but convenience of participation modalities can also strongly influence it. The best ways to recruit this population for a survey are still unknown.

A more methodical approach to determining efficient recruitment strategies for autism survey research is required due to the lack of evidence regarding recruitment strategies and the preferences of diverse families regarding research participation. The representation and quality of the research data as well as, in the long run, the delivery of autism services could be enhanced and refined by determining which contact methods are most effective for recruiting parents to participate in the study. The purpose of this study was to compare the effectiveness of phone, email and text message recruitment strategies for involving parents of autistic children in an online survey about their experiences with telehealth and coronavirus disease 2019 (COVID-19). We predicted that the best way to get survey responses would be through text message recruitment. The study was approved by the institution's institutional review board and carried out at an integrated health system in Southern California from May to July 2021. A random selection of 2,000 autistic children from a health system's autism registry was made. This sample reflected the known differences in autism between men and women, as more boys than girls are diagnosed.

Electronic Medical Records

Electronic medical records, outside claims and clinician reports were used to create the registry. After the children were chosen, they were linked to the names, addresses and phone numbers of their parents. As the purpose of the survey was to assess family experiences with therapy, parents who had at least one child with an autism diagnosis and at least one autism-related behavioral therapy referral (behavioral therapy, speech therapy, occupational therapy, or physical therapy) in 2020 were eligible to participate. The survey's results are reported elsewhere. 1,624 parents were eligible for random assignment as a result. Guardians were haphazardly appointed to one of three effort strategies utilizing R programming (form 4.1.2, R Center Group, 2020): Text (n=630), email (n=474) and phone (n=520) After the outreach protocol for the survey was completed, 322 distinct parent–child dyads from each of the three recruitment groups responded to the survey (20 percent response rate). There were 42 parents who responded to the survey for more than one autistic child, making up the final analytical sample of 1,666. All parents were informed of the study and the opportunity to participate in the Web-based survey simultaneously via a baseline email and mailed letter after they had been randomly assigned. Because there is conflicting evidence regarding the effectiveness of letter versus email contact for obtaining survey response. Two follow-up recruitment efforts were made following the baseline outreach, either through two phone calls, two text messages, or two emails, depending on the randomization. In the follow-up recruitment efforts for each of the three groups, participants were informed of the opportunity to participate in the study and how to access the survey. One week after the initial contact, the first follow-up was conducted; Three weeks after the initial communication, the second and final recruitment attempt was made.