April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: Navigating Neurodiversity: Digital Storytelling as a Means of Sensemaking for Caregivers of Autistic Children
In communication about health and well-being, social media emerges as a dynamic platform for facilitating connections, experience-sharing, and support access. This research explores the inventive approaches employed by caregivers of autistic children on social media, particularly Instagram, to comprehend their experiences, exchange information, and seek support within the innovative landscape of online caregiving. Despite the acknowledged trend of caregivers turning to social media (Bruhn, et al., 2014), a gap exists in comprehending the intricate dynamics and use of storytelling to navigate the complexities of these caregivers’ experiences. This study aims to bridge this gap by delving into the nuanced ways in which caregivers utilize storytelling on social media to make sense of their roles, establish connections, and foster a sense of community within the digital platform. Recognizing the influential role of narratives in shaping understanding and meaning in health communication, this study adopts the Communicated Narrative Sense-Making (CNSM) theory. CNSM theory centers on how individuals utilize narratives to comprehend their experiences and generate significance (Kellas, 2017). Founded on the retrospective heuristic of the theory, we believe that an examination of caregivers of autistic children on social media (Instagram) yields valuable insights into the construction and sharing of narratives by these individuals.
Instagram, as a visual storytelling platform, offers caregivers an outlet to share experiences, challenges, and coping strategies. This study employs a qualitative netnographic approach, exploring the distinctive digital landscape where caregivers seek support, share information, and navigate the challenges associated with raising autistic children. Through a content analysis, the study sought to identify the key motivations, challenges, and outcomes associated with the use of social media within this caregiving community. A diverse sample of Instagram posts tagged with caregiving-related hashtags, for instance, #parentingautism, #autismsupport, and #autismcaregiver was used to locate handles of parents with more than 200,000 followers. The analysis focused on visual elements, and captions, examining patterns, themes, and variations in caregivers’ storytelling expressions.
Preliminary results indicate that caregivers leverage Instagram for diverse purposes such as seeking information, emotional support, and a sense of community. Caregivers also articulate their experiences by regularly featuring themselves and their child-care routines, underscoring the importance of sustaining their well-being amidst the challenges of caregiving, emphasizing the intersection between been a parent and a caregiver. They utilize the platform to demonstrate the significance of community in their coping process, employing Instagram as a tool for educational advocacy. Additionally, caregivers share information about the conditions they are addressing and raise awareness about the challenges associated with caregiving. Using infographics, captions, and links to resources, they actively contribute to a broader dialogue surrounding their experiences. Caregivers also convey their emotions authentically, capturing moments of joy and accomplishment as well as instances of frustration and exhaustion that accompany the emotional rollercoaster of caregiving. The study contributes to the discourse on innovation in health communication by showcasing how social media serves as a crucial tool for caregivers of autistic children, empowering them to tell their stories and actively engage in advocacy efforts, challenging stigmas associated with autism.
Instagram, as a visual storytelling platform, offers caregivers an outlet to share experiences, challenges, and coping strategies. This study employs a qualitative netnographic approach, exploring the distinctive digital landscape where caregivers seek support, share information, and navigate the challenges associated with raising autistic children. Through a content analysis, the study sought to identify the key motivations, challenges, and outcomes associated with the use of social media within this caregiving community. A diverse sample of Instagram posts tagged with caregiving-related hashtags, for instance, #parentingautism, #autismsupport, and #autismcaregiver was used to locate handles of parents with more than 200,000 followers. The analysis focused on visual elements, and captions, examining patterns, themes, and variations in caregivers’ storytelling expressions.
Preliminary results indicate that caregivers leverage Instagram for diverse purposes such as seeking information, emotional support, and a sense of community. Caregivers also articulate their experiences by regularly featuring themselves and their child-care routines, underscoring the importance of sustaining their well-being amidst the challenges of caregiving, emphasizing the intersection between been a parent and a caregiver. They utilize the platform to demonstrate the significance of community in their coping process, employing Instagram as a tool for educational advocacy. Additionally, caregivers share information about the conditions they are addressing and raise awareness about the challenges associated with caregiving. Using infographics, captions, and links to resources, they actively contribute to a broader dialogue surrounding their experiences. Caregivers also convey their emotions authentically, capturing moments of joy and accomplishment as well as instances of frustration and exhaustion that accompany the emotional rollercoaster of caregiving. The study contributes to the discourse on innovation in health communication by showcasing how social media serves as a crucial tool for caregivers of autistic children, empowering them to tell their stories and actively engage in advocacy efforts, challenging stigmas associated with autism.