“My Way of Staying Connected”: The Lived Experience of Adults With Multiple Sclerosis as Everyday Technology Users

PURPOSE: Multiple sclerosis (MS) affects physical, cognitive, visual, and socioemotional domains, interfering with all areas of participation. Technology has the potential to improve quality of life by supporting people’s functional capacities. Specifically, the use of everyday technology can decrease stigma and increase affordability for those with disabilities compared with customized assistive technology. Surveys have identified people with MS as everyday technology users and have pointed out potential benefits and barriers to use. However, moving beyond description to meaning making is important to understand users’ perspectives as a means of maximizing quality of life. The purpose of this qualitative study was therefore to understand the lived experience of people with MS as everyday technology users.

METHOD: This study used a constructivist grounded theory approach. An iterative process of data collection and analysis was used to develop a preliminary conceptual model from the data. Four middle-aged adults with MS were purposively selected from the community. Participants reported using everyday technology and had various functional limitations related to strength, coordination, fatigue, vision, and cognition.

Each participant engaged in one semistructured interview at a university campus. Consistent with a responsive interviewing model, an interview protocol served as a guide. Audio recordings of the interviews were transcribed verbatim, and data were analyzed using hierarchical open coding. Through an iterative process of initial, focused, and theoretical coding, themes were identified and linked to a central category. Interviews were complemented by reflective memos to increase trustworthiness. Other strategies to increase rigor included thick description, audit trails, and interpretive consensus among multiple reviewers.

RESULTS: The central category that emerged from the data was connectedness. Specifically, participants with MS experienced the use of everyday technology as a means of connecting to self, others, and the world. In relation to the self, they engaged in sustaining worth and managing self. In relation to others, they described engaging socially and receiving support. In relation to the world, they discussed staying up to date and navigating the environment. Connection to the self and connection to others interacted within the context of connection to the world.

CONCLUSION: Although the desire for connection is perceived as a universal human experience, the experience of disconnection may be especially salient for people with disability. The present findings relate to previous studies highlighting the importance of connectedness for people with disability given physical, cognitive, socioemotional, and cultural factors that foster alienation. Occupational therapy practitioners can facilitate the use of everyday technology by people with MS as one means of nurturing connection to improve quality of life.

References

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Kraft, G. H., Kennedy, P., Lowenstein, N., Rumrill, P. D., Stewart, T., & Young, M. (2009). Staying connected: The use of computer-related accessible technology among people with multiple sclerosis. International Journal of MS Care, 11(Suppl. 1), 1–16. https://doi.org/10.7224/1537-2073-11.S1.1

Lejbkowicz, I., Paperna, T., Stein, N., Dishon, S., & Miller, A. (2010). Internet usage by patients with multiple sclerosis: Implications to participatory medicine and personalized healthcare. Multiple Sclerosis International, 2010, 640749. https://doi.org/10.1155/2010/640749