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Purpose <p>The study aimed to explore, synthesize, and critically appraise the literature on work participation and work-related success factors among individuals with rare diseases (RDs). In addition, we examined how employed adults with RDs themselves described key success factors, and to discussed clinical implications and directions for further research.</p> Methods <p>A systematic literature review was conducted in accordance with PRISMA guidelines, covering studies on work participation across 114 RDs. Eligible peer-reviewed studies were critically appraised and narratively synthesized. In addition, qualitative focus group interview with employed adults with RDs were conducted and thematically analysed to capture lived experiences and success factors.</p> Results <p>Fifty-eight articles met the inclusion criteria; 46 were cross-sectional quantitative questionnaire studies, five qualitative, four mixed methods, two longitudinal, and two intervention studies. Methodological quality of the included articles was generally good, though limited by small sample size and/or low response rate. Despite these limitations, the evidence indicates that individuals with RDs face substantial challenges in work participation, often exacerbated by limited knowledge and awareness in the workplace. Success factors identified in the literature included younger age, male gender, higher educational attainment, and fewer health complications. From the focus groups, two main themes and seven categories of work-related success factors emerged: 1) Contextual Factors: (i) s<i>ocial attitudes and politics</i>, (ii) <i>public employment support provisions</i>, (iii) <i>workplace culture and environment</i>, 2) Individual Coping Strategies: (iv) <i>self-acceptance of disability</i>, (v) <i>self-motivation and preferences</i>, (vi) <i>problem-focused coping</i>, (vii) <i>preserving dignity.</i> The themes and categories appeared interrelated in terms of barriers, facilitators, and strategies for work participation among adults with RDs.</p> Conclusion <p>While individuals with RDs encounter significant workplace challenges, many also achieve notable successes. Key success factors were associated with educational attainment, type and extent of disability, workplace conditions, and coping strategies. Structural factors such as employment policies and public attitudes also appear important, although not directly analysed in this study. The limited scope of current research highlights the urgent need for further studies to strengthen the evidence base and enhance support for individuals with RDs in working life.</p>

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Success factors enabling employment for adults with rare diseases: a systematic literature review and a qualitative study

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月24日

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  • Gry Velvin,
  • Karina Heldal,
  • Brede Dammann,
  • Trond Haagensen,
  • Pia Huseby Christiansen,
  • Anne-Mette Bredahl

摘要

Purpose

The study aimed to explore, synthesize, and critically appraise the literature on work participation and work-related success factors among individuals with rare diseases (RDs). In addition, we examined how employed adults with RDs themselves described key success factors, and to discussed clinical implications and directions for further research.

Methods

A systematic literature review was conducted in accordance with PRISMA guidelines, covering studies on work participation across 114 RDs. Eligible peer-reviewed studies were critically appraised and narratively synthesized. In addition, qualitative focus group interview with employed adults with RDs were conducted and thematically analysed to capture lived experiences and success factors.

Results

Fifty-eight articles met the inclusion criteria; 46 were cross-sectional quantitative questionnaire studies, five qualitative, four mixed methods, two longitudinal, and two intervention studies. Methodological quality of the included articles was generally good, though limited by small sample size and/or low response rate. Despite these limitations, the evidence indicates that individuals with RDs face substantial challenges in work participation, often exacerbated by limited knowledge and awareness in the workplace. Success factors identified in the literature included younger age, male gender, higher educational attainment, and fewer health complications. From the focus groups, two main themes and seven categories of work-related success factors emerged: 1) Contextual Factors: (i) social attitudes and politics, (ii) public employment support provisions, (iii) workplace culture and environment, 2) Individual Coping Strategies: (iv) self-acceptance of disability, (v) self-motivation and preferences, (vi) problem-focused coping, (vii) preserving dignity. The themes and categories appeared interrelated in terms of barriers, facilitators, and strategies for work participation among adults with RDs.

Conclusion

While individuals with RDs encounter significant workplace challenges, many also achieve notable successes. Key success factors were associated with educational attainment, type and extent of disability, workplace conditions, and coping strategies. Structural factors such as employment policies and public attitudes also appear important, although not directly analysed in this study. The limited scope of current research highlights the urgent need for further studies to strengthen the evidence base and enhance support for individuals with RDs in working life.