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618 Lived educational experience of young adults with childhood- and adult-onset systemic lupus erythematosus: a multi-center Canadian qualitative study
  1. Michael A Golding1,2,
  2. Fareha Nishat3,
  3. Kaitlyn A Merrill1,
  4. Ramandeep Kaur1,
  5. Jennifer Stinson3,4,
  6. Jennifer LP Protudjer1,2,
  7. Roberta L Woodgate5,
  8. Christine Peschken6,
  9. Diane Lacaille7,
  10. Umut Oguzoglo8,
  11. Zahi Touma9 and
  12. Lily SH Lim1,2
  1. 1Children’s Hospital Research Institute, University of Manitoba, Canada
  2. 2Department of Paediatrics, University of Manitoba, Canada
  3. 3Child Health Evaluative Sciences, SickKids (Toronto), Canada
  4. 4Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Canada
  5. 5College of Nursing, University of Manitoba, Canada
  6. 6Department of Internal Medicine, University of Manitoba, Canada
  7. 7Arthritis Research Canada, British Columbia
  8. 8Department of Economics, University of Manitoba, Canada
  9. 9Department of Internal Medicine, Toronto Western Hospital, University of Toronto, Canada

Abstract

Background Education and employment established in young adulthood predict future lifetime socioeconomic achievements. Young adults with Systemic Lupus Erythematosus (SLE) have physical, cognitive and mental health issues and other comorbidities that may impact employment.

Objectives To understand the lived experiences of young adults with SLE (YASLE), as students, and to assess their perceived barriers from SLE.

Methods YASLE were recruited from two Lupus clinics in Toronto and Winnipeg. Semi- structured qualitative interviews were conducted individually via secure video conferencing. As this study was conducted during the coronavirus pandemic, participants were also asked about the pandemic impacts on their education experiences. All interviews were transcribed verbatim, double-coded and analysed using a reflexive thematic approach.

Results Twelve participants (2 males), 9 of childhood- and 3 adult-onset SLE (cSLE, aSLE) were interviewed. Nine participants (82%) were <25 years old. Five also worked while studying. Five were Asians, 5 were White, 2 of other ethnicities. Half have severe disease (central nervous system or renal involvement). Median duration of disease was 4.0 (25th-75th percentile, 1.8- 5.3) years. The impacts of SLE on their education experience emerged in 5 themes:

1) Challenges imposed by SLE: Difficulties adjusting to the diagnosis, physical and cognitive symptoms of SLE. While most participants disclosed their diagnosis to their schools, some expressed hesitation.

2) Changes in aspirations: Education/career goals were modified by reducing course load or shifting to more sedentary or less cognitively demanding careers.

3) Coping and acceptance: More adaptive than maladaptive coping strategies were used to manage their SLE, including self-acceptance, pacing, planning and avoidance. All strived to do well in their studies despite SLE and were hopeful for their futures.

4) Facilitating factors for education success: Family and friends’ social support, individualized accommodations from school and parental financial support were identified.

5) Pandemic impacts: Virtual learning and flexible schedules enabled participants to adapt their schedules according to their physical conditions (e.g. pain, fatigue). However, fewer opportunities to interact in-person were viewed as challenges. Participants want hybrid options to continue even after the pandemic.

Conclusions SLE affected students’ performance through physical symptoms, fatigue and cognitive dysfunction. Ongoing social and school supports help to support them. Maintaining the remote learning options may increase accessibility for them. These results identified opportunities for developing future supportive interventions for YASLE patients in their schooling which then better prepare them for future employment.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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