Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis

Nicola Glennie*, Fiona M. Harris, Emma F. France

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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Abstract

Purpose
Current research suggests that feeling a lack of control is common among people living with Motor Neurone Disease (plwMND). This systematic review explores and synthesises evidence about: (1) What factors contribute towards perceptions of control in plwMND (2) How do plwMND attempt to maintain control in their daily lives?

Methods
A systematic search from inception to January 2022 for peer-reviewed journal articles in English reporting qualitative and mixed-method primary studies or reviews of plwMND’s perceptions or experiences of control was conducted on CINAHL, MEDLINE, PsycINFO, ASSIA, Embase and AMED. Eligible articles underwent quality appraisal, data extraction and a thematic synthesis was carried out.

Results
Twenty publications, 19 primary studies and one review, from nine countries, reporting the views of 578 participants aged from 20 to 90 years were included. Two key analytical themes were identified (1) diagnosis can lead to a disruption of previously held control beliefs (2) plwMND use a range of control strategies to attempt to retain control in their lives.

Conclusion
This is the first systematic review and qualitative evidence synthesis to reveal the strategies plwMND use to regain control and that control beliefs about health, fate, identity and bodily control are significantly altered by the diagnosis.

Implications for rehabilitation
Outcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements.
plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time.
The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict.
Original languageEnglish
Number of pages13
JournalDisability and Rehabilitation
Early online date1 Aug 2022
DOIs
Publication statusE-pub ahead of print - 1 Aug 2022

Keywords

  • motor neurone disease
  • qualitative
  • review
  • quality of life
  • patient experience
  • amyotrophic lateral sclerosis

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