Everyday technology use for men with multiple sclerosis: An occupational perspective

Abstract

Introduction: Everyday technology has the potential to increase quality of life for individuals with disabilities. In a society that relies on technology for participation, exploring everyday technology use is a fundamental part of understanding lived experiences of occupation. The meaning and roles individuals with disabilities ascribe to technology may be influenced by sociocultural considerations, such as gender. This interpretive phenomenological study aimed to present an occupational perspective of everyday technology use for men with multiple sclerosis. Method: Three middle-aged men (50-57 years old) with multiple sclerosis participated in an individual semi-structured interview. Data were analysed using a hermeneutic approach of close reading. After the initial analysis, superordinate themes were examined relative to an occupational framework. Findings: The identified themes were 'searching online as means and end' (doing); 'connecting to others and society' (belonging); and 'seeing present and future self' (being and becoming). Conclusion: The meaning of occupational experiences of everyday technology for men with multiple sclerosis are influenced by master narratives of masculinity. Since everyday technology is intertwined with multiple dimensions of occupation, facilitating its use may promote health and quality of life.

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

“…Managing fatigue required constant planning and pacing of tasks to accommodate the anticipated fatigue-related after effects. 12,13,31,43,49,53,60,61,66 It was described in terms of its impact on work, 20,51,53,72,77,78 social life, 20,47,51,53,[77][78][79] family life 14,20,47,51,53,54,77,78,80 and physical and psychological health. 16,18,49,78 People with MS described feelings of frustration about the limitations that fatigue imposed on their lives and the resulting loss of spontaneity.…”

“…• Uncertainty of future progression, recovery and clinical course, including what future symptoms might be experienced and how disabling they might be 9,10,13,21,31,35,37,43,47,50,53,59,63,69,[106][107][108] • Fear of potential futures, including cognitive and vision decline, 9,63 loss of mobility, and fear of a potential need for aids, especially a wheelchair 9,10,13,47,53,107 Work, social and family life • Concern about the ability to continue to work, maintain independence and provide for themselves and their family 35,43,53,56,59,65 • Fears of passing MS onto children and worry about the impact that MS might have on future ability to parent 11,13,14,35,43,69 • Concerns about being a care burden on family and significant others in the future were also expressed 13,14,35,45,65,68,70,80,109 • Star...…”

“…• Valued activities included parenting, 14,35,50,53,72,80 playing with children, 53,72,107 wo rk, 10,32,34,35,43,50,53,59,75,78,107 , social activities, 18,32,34,43,50,53,59,66,74 activities of daily living, 10,14,18,32,53,66,69,72,77,80,108 , and physical activity, 10,32,34,43,47,50,53,59,60,72,74,78,…”

“…• Fatigue was described as a symptom that featured across multiple contexts of people's lives [12][13][14]16,18,20,22,31,34,35,41,43,47,[49][50][51]53,57,60,61,66,72,74,[77][78][79][80] • Preceding diagnosis 20,33,51,69 and, later, as a flag indicating relapse or progression 22,32,49 • A wide range of related physical and psychological symptoms included depression and anxiety, 18 cognitive and mood changes, 43 pain, 58 bladder and bowel dysfunction, 77 spasms, 60 mobility problems and paralysis, 22,57 numbness, pins and needles, 38 trigeminal neuralgia 32 and optic neuritis. 33 Fatigue was associated with heat sensitivity and vice versa, and had considerable impacts on people's lives 33 • Different descriptions of fatigue were used synonymously; these included being 'washed out', 65 'shut down', 61…”

“…a. effective use of exercise 16,18,49,78 and diet 49 b. incorrect use of exercise causing fatigue 16,49 c. lack of information about how to manage fatigue 20,22 Work, social and family life • Impacts -work, 20,51,53,72,77,78 social life, 20,47,51,53,[77][78][79] family life 14,20,47,51,53,54,77,78,80 everyday activities, physical and psychological health 16,18,49,78 • Perceived lack of legitimacy 40,42 • repeatedly having to explain or justify limitations to friends, family and workplaces 33,42,48,52 Adapting to life with MS Physical and psychological symptoms • Technology enabled: a. connection to community (internet) 82 b. participation in online exercise programs 43 c. monitoring activity and fitness levels (Fitbits) 18 d. assistance with activities of daily living activities (mobile phone) 53 and work-related tasks (iPad and iPod) 59 • Pacing, planning and ensuring time to rest, …”