Telehealth in India Experiences of Parents of Children with Autism

I am interested in studying the use of technology to support delivery of instruction to train parents of children with Autism in India. India being the second most populous country in the world and home to nearly a fifth of the world's population does not have an estimate of prevalence of autism (Rudhra et al., 2010). Some experts say that one in 68 children are diagnosed with Autistic Spectrum Disorder (ASD) in India (Kumar & Best, 2006).With nearly 70% of the population living in rural areas, access to community services for children with Autism is limited. The World Health Organization (WHO) identified geographical factor as the primary barrier for families in rural areas to receive services for individuals with intellectual disabilities. Likewise, most professional services for autism is concentrated in the big cities of India and hence families in rural or remote areas have limited access to evidence-based intervention. Thanks to the Digital Economy initiatives taken by the Indian government, India ranks as the second largest country in internet usage (Kumar & Best, 2006). Trailing behind China, it ranks higher than the USA in terms of internet users. Hence, the use of telemedicine technology such as ‘Telehealth’ could[AME2] help families overcome this barrier in a country like India.

Telehealth is a delivery model that uses digital information and communication technologies to provide therapeutic services remotely. Technologies include smartphone, mobile internet, mobile apps, videoconferencing, streaming media, and wireless communications. Now, Telehealth can reach out to any users regardless of their location, be it in a large city or any remote part of the country. This is made possible because of advanced technology tools at the hands of the users to include internet-enabled handheld devices, video conferences or live streaming of videos.

Taking advantage of technological advances, Telehealth utilizes parents to deliver social interventions to children with ASD. (McDu e et al. 2013; Vismara et al. 2012, 2013; Wainer and Ingersoll 2015). Parent training is an alternative and attractive intervention as it increases teaching opportunities and scope for generalization and reduces treatment cost significantly. As parents are a proficient long-lasting agent of change, it is worthy to invest in parent training. With the advancements in technology it is now possible to provide training over distance which would increase access to evidence-based interventions to families with limited resources in their community. Results of evidence-based interventions are encouraging for Telehealth services in treating disorders and refining the approaches. (Webb et al., 2010).

Presently in India there are only two institutions who are using a Telehealth model to deliver Parent training sessions virtually. The enrollment of parents has been increasing steadily and is predicted to continue to grow in the upcoming years. Therefore, I would like to study the experiences of parents of children with Autism using telehealth in India.

I believe that qualitative methodology would be an appropriate research strategy because I hypothesize that my data would help me understand the how parents with children with Autism interpret their experiences and what meaning they attribute to their experiences. Since the technology involved in the service delivery will be the same universally, it is important to understand the experiences of individual families in India. I believe that I will need an in-depth data collection system and analysis to understand the practical challenges that are contextual to India’s geography and culture.

Study Context

The Telehealth model was evaluated using surveys ( Telehealth Provider Satisfaction Survey Telehealth Caregiver Satisfaction Survey Parent Satisfaction Questionnaire, Bearss & Bearss, 2017) and rating scale (modified version of the Behavioral Intervention Rating Scale, Wainer and Ingersoll 2014). Overall parents responded favorably to both components of the model - online modules and videoconferencing. In response to the survey about the limitations of the program, parents noted challenges associated with the remote coaching sessions including difficulty with accessing the video-conferencing program and difficulty maintaining the child’s engagement in front of the video camera (Wainer and Ingersoll 2014).

Although, Telehealth has been studied via Surveys and evaluated by rating scales there are no studies that have attempted to uncover trends in thought and opinions, and dive deeper into the experiences of parents who have been using Telehealth. As mentioned earlier Telehealth seems to be a viable option for parents in India who do not have access to Community based services. Therefore, it is important to understand the experiences of the parents who are using Telehealth in India to be able not only add to literature but also to help inform institutions who are primarily involved in designing the service delivery model.

Research Question

How do parents of children with Autism interpret their training experiences using Telehealth in India?

Research Methods

Type of Qualitative Approach

The type of qualitative approach that I would like to use is “Basic Qualitative Study” as I am interested in (a) how people interpret their experiences with Telehealth and what meanings they attribute their experiences.

Merriam (2009) describes a basic qualitative research study as having been derived philosophically from constructionism, phenomenology, and symbolic interaction and as being used by researchers who are interested in "(1) how people interpret their experiences, (2) how they construct their worlds, and (3) what meaning they attribute to their experiences. The overall purpose is to understand how people make sense of their lives and their experiences" (p. 23). Ultimately, the purpose of educational qualitative research is to improve our practice and the basic qualitative research design is particularly well suited to obtain an in-depth understanding of effective educational processes (S. B. Merriam, personal communication, September 5, 2013).

Setting and Participants

There are currently two institutes in India that have started using Telehealth models to train parents so I plan on interviewing at least 4 parents which can be either the mother or the father.

Data Collection

Data will be collected via interviews from at least 4 parents in India who have been receiving training via Telehealth. The interviews will be audio recorded and then transcribed for further analysis. The interview will be semi-structured and will included primarily open-ended questions with scope for clarifying questions as and when the need will arise.

Data Analysis

Data will be Analyzed as suggested by Merriam (2009) which would basically involve identifying recurring themes or patterns supported by the data from which they are derived. Similar patterns that go together will be grouped and categorized. As described by Creswell (2007), following these patterns, I would interpret my findings by drawing links and making sense of the patterns that seem to be building up across the data collected from the participants. Finally, the findings that are relevant to the research question will be represented in tables and figures if applicable.

Data Quality/Limitations

As Basic Qualitative Research method is criticized to have a self-image biased colonial representation of the findings that researchers may take (Glesne, 2011), steps will be taken to reduce this bias and enhance the Trustworthiness of the study.

Data triangulation will be used to show the research study’s findings are credible. Triangulation refers to the use of multiple methods or data sources in qualitative research to develop a comprehensive understanding of phenomena (Patton, 1999). Triangulation also has been viewed as a qualitative research strategy to test validity through the convergence of information from different sources. In order to do accomplish credibility, Analyst triangulation will be employed. This will involve utilizing another analyst to review the findings from my data to illuminate any blind spots in process of Data Analysis.

The second strategy that I will use to enhance the Trustworthiness of my study would be Member-checking. I will be sharing my data, interpretations and conclusions with the parents who participate in my study. This will provide the opportunity for parents to clarify their intentions, correct errors and provide any further information.

I will also provide an Audit Trail which would include details of every step of data analysis that was made in order to provide a rationale for the decisions made. This will help establish that the research study’s findings accurately portray participants’ responses. Thus, further enhancing the Trustworthiness of the study.

Implications

This study will examine the service delivery model, Telehealth, as a as a viable alternative and attractive intervention in terms of increased teaching opportunities and enhanced scope for generalization and reduced treatment cost without compromising the quality of care delivered to families.

Telehealth may be an effective supplement to traditional, in-person parent training, particularly to geographic areas in India where community services are limited. Benefits to this approach may include reduced cost, lack of travel expenses, convenience and flexibility of online learning, and accessibility to evidence-based interventions. However, not all families will benefit equally from telehealth intervention. When evaluating effectiveness with this type of platform in a country India, it will be critical to assess the breadth of conditions and necessary resources under which a program is successful, the learning and cultural characteristics of parents and children related to success and reliability of high speed internet for video conferencing. Therefore, having an in depth understanding of the experiences of parents with children with Autism undergoing training using Telehealth will not only add to literature but also to help inform institutions who are primarily involved in designing the service delivery model. This study will ultimately help to determine how viable telehealth may be for providing intervention at minimal cost.

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