Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model

Abstract

Objective: We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time.

Design: Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77 years of age. Thirteen were diagnosed with primary progressive MS and 21 with secondary progressive MS. Data were analysed using a grounded theory approach.

Results: Participants described initially bracketing the illness off and carrying on their usual activities but this became problematic as the condition progressed and they employed different adjustment modes to cope with increased disabilities. Some scaled back their activities to live a more comfortable life, others identified new activities or adapted old ones, whereas at times, people disengaged from the adjustment process altogether and resigned to their condition. Relationships with partners, emotional reactions, environment and perception of the environment influenced adjustment, while people were often flexible and shifted among modes.

Conclusions: Adjusting to a progressive condition is a fluid process. Future interventions can be tailored to address modifiable factors at different stages of the condition and may involve addressing emotional reactions concealing/revealing the condition and perceptions of the environment.

Keywords:

• multiple sclerosis
• adjustment
• model
• partners

Acknowledgements

The authors would like to thank the people with MS, who helped us develop the framework and those who took part in this study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

This work was supported by Multiple Sclerosis Society UK [grant reference 4].