Work participation in adults with rare diseases: Challenges and possibilities

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Project leader

Gry Velvin, senioradvisor (MSW, cand.polit. Ph.D.), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Background

Research indicates that participation in the workforce plays a pivotal role in health, well-being, and quality of life. Working is also essential in preventing marginalization and social exclusion. However, there is a limited body of research addressing individuals with rare diagnoses. Based on clinical experiences, we have observed that many people with rare diseases face challenges in their professional lives, yet many also function effectively in work. To date, we have not identified studies that specifically examine the factors contributing to opportunities and the successful workplace integration of individuals with rare diagnoses.

Objective

The objective of this study was to gain a comprehensive understanding of the challenges and opportunities faced by individuals with rare diagnoses in the workforce. The study seeks to achieve an overview of pertinent research on work participation in adults with rare diseases. Furthermore, explore the experiences of people with rare diseases, their specific needs, and factors that may contribute to the successful integration in work.

Methods and materials

The study is structured into two sub-studies:
Sub-study 1: A scoping review of work participation in people with rare diseases.
Sub-study 2: Focus group interviews of people with rare diseases who are employed and have work related experiences. The focus groups addressed issues related to challenges and opportunities in work life for those with a rare disease. The focus group interviews were audio-recorded, and transcribed verbatim and analysed using content analysis.
Recruiting: Participants of a seminar specially designed for employed individuals with rare diseases were invited to participate in focus groups (n=14).

Users-participation in the study

Three adults with a confirmed rare diagnose have been employed in a reference group to ensure the quality of the content, design, analysis, and publication of the results from sub-study 2.

Results

To date, a scoping review article titled "Work-participation in Rare Diseases" has been published in an international scientific journal. An article concerning the focus group interviews has been submitted to the Norwegian Journal of Welfare Research in August 2023.

Gry Velvin (Phd), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Brede Dammam (MSW), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Trond Haagensen (MSW), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Gunnbjørg Karin Aune(MSc), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Heidi Johansen ( MSc), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Trine Bathen (MSc), TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital.

Amy Østertun Geirdal (professor I), Department of Social Work, Child Welfare and Social Policy, Faculty of Social Science, Oslo Metropolitan University, Norway.

Ethical approvals

NSD: Ref. 999569
REK: An application has been assessed as not requiring presentation to the REK. Application number: 384483

Funding

Time period

From 01.10.21 to 01.01.24.