Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

Abstract

Background The internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information. Objective This study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism. Methods The PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder–based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed. Results A total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website. Conclusions The development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child’s diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.

Citizen involvement in research on technological innovations for health, care or well-being: a scoping review

“…From the 83 included records, eight were published in 2016, 14 in 2017, 15 in 2018, 17 in 2019, and 29 in 2020. Most studies were conducted in the United States (N=17) [44, 46–48, 52, 54, 71, 72, 76, 89, 94, 98, 100, 104, 107, 119, 123], followed by Canada (N=14) [42, 43, 45, 59, 65, 69, 70, 81, 86–88, 92, 95, 105], the United Kingdom (N=12) [51, 56, 57, 67, 80, 90, 96, 102, 103, 111–113], Denmark (N=6) [77, 78, 85, 106, 114, 120], and Australia (N=6) [83, 91, 108, 110, 116, 118]. Five studies were conducted in multiple countries [53, 97, 99, 109, 121], three studies were conducted in Sweden [Erlingdottir et al 2019; Gardsten 2017; Wikman et al 2018], and Norway [74, 75, 115], and two in Austria [61, 66], the Netherlands [34, 68], and Ireland [79, 117].…”

“…Participatory design was most prominent (N=24) [42, 44, 45, 50, 57, 61, 63, 66, 69, 74, 75, 77, 78, 80, 82, 83, 85, 91, 100, 104, 106, 117, 119, 123], followed by co-design (N=16) [55, 64, 65, 72, 76, 81, 86, 88, 96, 99, 101, 103, 105, 110, 113, 121]. Other often used terms were community based participatory research (N=9) [48, 52–54, 56, 70, 71, 93, 94], co-creation (N=8) [43, 46, 58, 62, 73, 97, 107, 120], public and patient involvement (N=7) [67, 79, 90, 102, 109, 111, 114], participatory action research (N=5) [59, 68, 108, 112, 122], and user centered design (N=4) [34, 89, 92, 115]. Citizen science was only used in two records [49, 118], and usability study [47], co-production [51], human centered participatory design [84], social Justice design [87], symposium [95], community oriented approach [98], and participation in research [116] were all only used once to describe the research design.…”

“…Besides the term citizen, participant, patient, actor or (end) user, there are different terms used to describe the involved citizens. These include key informants [45], co-leadership [46, 81], co-designers [45, 65, 86, 89], co-researchers [51], co-creators [58, 73], co-facilitators [102], co-investigators [109], inventors [123], design/research partners [117, 122], citizen scientist [118], community advisory committee [98], research coalition [105], steering group [71, 90, 112], (expert) advisory group [51, 108, 113, 116], and development group/team [34, 59, 74, 120]. Fifty-nine of 83 records included adults, 11 records included younger adults (13 to 25 years old) [43, 51, 58, 59, 67, 78, 94, 98, 99, 119, 120], eight records included children (12 years or younger) [61, 69, 70, 72, 104, 117, 121, 123], and nine records included older adults [59, 68, 73, 83, 84, 89, 91, 97, 118].…”

“…Other records using similar participatory action research methods do give a definition. For example Wikman et al [2018] based their design on Kindon et al [2008], "which is a collaborative process of knowledge production and co-learning, placing people with lived experience at the centre of the process" [122,126], and Rabba et al [2020] based their method on Baum et al[2006], "the stakeholders are integral to all parts of the research process, participants' active role in the outcome sets participatory action research apart from traditional research methods where the participants tend to be more passive in their receipt of research outcomes" [108,127]. Often a participatory action research is divided in phases.…”

“…Often a participatory action research is divided in phases. Rabba et al [2020] used planning, action, observation, reflection, and using the new learning to plan further steps in their research [108], and Haufe et al [2019] used the two phases of understanding the current and developing a tool [68]. All participants of the study by Fletcher and Mullet [2016] were involved in the phases planning, designing, and evaluation of the community workshops [59].…”