title: Experiences of living with motor neurone disease: a review of qualitative research.
abstract: OBJECTIVE
  This review sought to answer the question "what is known about people's experiences of living with MND?".
  
  
  METHODS
  The review followed the guidelines of the Centre of Reviews and Dissemination. Twenty articles met the inclusion criteria and their results were analysed thematically. Data were managed and coded using the software package NVIVO and the analysis was performed in two stages, with the first stage aiming to develop descriptive themes offering an overview of the included data. During the second stage, analytical themes were developed with the explicit aim to answer the review question.
  
  
  RESULTS
  The themes that emerged point to the following: (a) people with motor neurone disease (MND) develop experiential knowledge that helps them to live with the disease and (b) while people with MND believe they do not have any control over the disease, they try to have control over their lives through active choices, e.g. how and when to use adaptive equipment.
  
  
  CONCLUSIONS
  This review highlights the decision-making and knowledge generating processes used by people with MND. Further research is required to explore these processes and their implications for the care of people with MND.
  
  
  CONCLUSIONS
  Decision-making process by MND patients regarding their care is complex and takes into account the social elements of the disease as well as the medical. Exploring the practical knowledge that patients develop can offer insights on appropriate care for MND patients.
authors: Department of Occupational Therapy, School of Healthcare Studies, Cardiff University , Cardiff, Wales , UK.
authors: Dikaios
authors: D
authors: Sakellariou
authors: Gail
authors: G
authors: Boniface
authors: Paul
authors: P
authors: Brown
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D000328:Adult; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000175:diagnosis / Q000523:psychology* / Q000534:rehabilitation*; D010353:Patient Education as Topic; D036301:Qualitative Research; D011788:Quality of Life; D018570:Risk Assessment; D012720:Severity of Illness Index; D012737:Sex Factors; D018434:Sickness Impact Profile