Thesis A qualitative study on challenges, structures, support & well-being faced by individuals with CFS/ME within working life, 2024, Kvernes

To Work and Recover

A qualitative study on challenges, structures, support & well-being faced by individuals with CFS/ME within working life.

Ådne Kvernes

15-05-2024

Supervisor: Rannveig Kaldager Hart

Co-Supervisor: Ivan Spehar

University of Oslo

Faculty of Medicine
Department of Health Management and Health Economics

Thesis submitted as a part of the Master of Philosophy Degree in Health Economics, Policy and Management
30 ECTS

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https://www.duo.uio.no/bitstream/handle/10852/112239/HMM4501---Kvernes----dne.pdf

Abstract

Background:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) presents significant challenges to individuals and the welfare state. There remains a large gap in research on both pathophysiology and the practical implications of living with the health condition. Facilitating an inclusive working life is important for individuals with CFS/ME, and to address broader challenges posed by the increasing prevalence of chronic illnesses.

Theory:

The study relies on a theoretical framework consisting of: Self-Determination Theory (SDT), which emphasizes the role of relatedness, competence, and autonomy to foster intrinsic motivation, the Job Demands-Resources (JD-R) model, which explores the balance between job demands and resources, and the Chronic Care Model (CCM), which focuses on integrated, patient-centered care.

Methodology:

This qualitative study conducted digital semi-structured interviews with 13 individuals suffering from milder severity of CFS/ME, aimed at understanding their employment experiences. Thematic content analysis was conducted to analyze the interview data, focusing on motivation, challenges, the dynamics between individuals and welfare services, and the importance of support systems.

Results:

Participants expressed a high intrinsic motivation to work. They also highlighted the need for flexibility and supportive environments as essential to sustain employment. The major challenges faced were securing health-congruent employment, and interactions with the Norwegian Labor and Welfare Administration (NAV).

Discussion:

The study emphasizes the importance of emotional support, user participation, and individualized facilitations in managing CFS/ME within the context of employment. Interactions with NAV result in burnout due to straining encounters, highlighting a need for improvements in their approach to foster an inclusive working life.

Conclusion:

The interviews were analyzed through the theoretical framework and offer insight into underexplored topics on CFS/ME within working life. The findings align with those in related studies. This study recommends extensive support to help ME patients maintain employment. Future research should aim to bridge the research gap that exists.

Keywords: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Employment, Self-Determination Theory, Job Demand-Resources, Chronic Care Model, Flexibility, Individualization, NAV, Welfare State, Qualitative Research.