2016 International Symposium - Dublin · Healthcare · Insights

Quality of life and MND – insights from the Symposium


As an occupational therapist, I am interested in how people continue to find meaning, purpose and achieve quality of life in the face of continued loss of function and disability. With this in mind, I was struck by two presentations at the Symposium. First off a bit of background to set the scene.

When writing my dissertation many moons ago, an emerging body of evidence called occupational science was growing in popularity and I stumbled upon a chapter in the book ‘Occupational Science: The Evolving Discipline’ written by Professor Stephen Hawking1. It was called ‘Striving for excellence in the presence of disabilities’.

In this chapter Professor Hawking suggested therapy should be aimed at what an individual can do, rather what they cannot. Similarly, Rogers2 said “the occupational therapy process is geared toward what is left after disablement, rather than what is lost. This leads us to encourage disabled people to make the most of their remaining capabilities’, which leads on nicely to the presentations.

More than 15 years after completing the dissertation, it was great to hear Professor Carolyn Young share results from the TONiC (Trajectories of Outcome in Neurological Conditions) study, which suggest a strong association between self efficacy, self esteem and quality of life for people with MND. When asked how these can be achieved, Professor Young explained that mastery experiences are important.

This concurs with the perspective of Csikszentmihalyi3, who suggested well matched use of skills to a task, also known as the ‘Just Right Challenge’ boosts belief in self efficacy.

If I’ve interpreted the findings correctly, perhaps adjustment of clinical care which enables people with MND to have greater choice and control and to gain a sense of mastery is one way to enhance quality of life.

The second presentation to catch my interest focused on a randomised clinical trial in Italy which found MND specific meditation training can improve quality of life.

For many years relaxation training has been used to help people with mental health difficulties and also in cardiopulmonary rehabilitation groups, however there is a lack of studies about psychological intervention for the promotion of wellbeing in people with MND.

One hundred participants were recruited to the study which aimed to test the efficacy of an MND-specific mindfulness-based intervention. Adults who received a diagnosis within 18 months were randomly assigned to an eight week meditation training programme or to the usual care.

Over time it was noted there was a significant difference between the two groups in respect of quality of life. Significant differences between groups were also found for anxiety, depression, negative emotions and interaction with people and environment.

Rachel Boothman

Head of Education and Information, MND Association

 

References

  1. Hawking SW (1996) Striving for excellence in the presence of disabilities, in Zemke R and Clark F (1996) Occupational Science: The Evolving Discipline. F.A. Davis Company: Philadelphia.
  2. Rogers J (1982) The spirit of independence: the evolution of a philosophy. American Journal of Occupational Therapy. Vol 36, p. 709-715.
  3. Csikszentmihalyi M (1993) Activity and happiness: towards a science of occupation. Occupational Science: Australia. Vol. 1, p. 38-42.

 

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