Exploring the complexities of safe postural management for people in Scotland with a diagnosis of Huntington’s disease: A survey of health care professional opinion.

Abstract

Executive Summary

The following project was developed in partnership with Scottish Huntington’s Association (SHA) who have given permission to be named throughout this report (appendix 1). Scottish Huntington’s Association are a charity that offer extensive specialist support to families with a diagnosis of Huntington’s disease in Scotland (SHA 2019). Huntington’s disease (HD) is a hereditary neurodegenerative condition that impacts on a person’s cognitive, physical and psychological functioning (Nance 2017). The need for the project was identified by SHA after the development of new postural management guidelines for neurodegenerative conditions. From their expertise in this field, they acknowledged the guidelines would not meet the needs of this population as they failed to incorporate the unique characteristics of HD. Involuntary movements (known as chorea) is characterised by abnormal, uncontrollable movements affecting the persons trunk, face and limbs (Bates et al. 2014). As the condition progresses, the person will be unable to change their position independently (Pope 2007). Therefore, 24hour postural management is an imperative intervention for people with HD to maintain function, health and support postural stability (Stinson et al. 2020).

The preliminary stage of developing guidelines was completed, through a scoping exercise which took place in the form of a research project. A generic qualitative approach was used to develop an online survey and a total of seventeen participants completed the survey. Participants were from a variety of health care disciplines across different localities within Scotland, which was the desired sample representation. The survey required the participants to reflect on experiences of providing postural 3 management to those with HD, offering opinions on the needs, risks, barriers and facilitators to this approach.

Six themes were identified from the findings and involuntary movements were discussed extensively throughout. The findings from the survey made it abundantly clear that involuntary movements are a unique characteristic of HD which impacts on safe postural management. The postural management needs for people with HD related to functional ability, comfort, safety and maintaining an appropriate posture over a 24hour period. The expertise of occupational therapists and HD specialists were an important tool utilised by other health care professionals when providing postural management. This was often the preferred method of knowledge generation rather than the use of guidelines, although some guidelines and resources were utilised. There was a disparity in response across localities relating to training and education. Cost, use and availability of equipment impacted on the effectiveness of services and to the health and wellbeing of the person and their family. A report will be provided to SHA with evidence from the research that could have the potential to move guideline development onto the next phase.

A conference abstract for the World Federation of Occupational Therapy Congress: Occupational R-Evolution in 2022 is included in appendix 2.