AHSS 2: Music therapy to support family experiences of Huntington’s Disease

Faculty: Arts, Humanities and Social Sciences

Supervisors: Dr Jonathan Pool, Prof Wendy Magee (external), and Prof Helen Odell-Miller 

Interview date: 31 March 2022

Our university has recently won the Queen's Anniversary Prize for Research and Innovation, specifically for our work in the Cambridge Institute for Music Therapy Research (CIMTR).

Huntington’s Disease (HD) is a neurological illness caused by a genetic abnormality. It is hereditary and each child born to a parent with Huntington’s Disease has a 50% chance of also inheriting the gene. More than 5,700 people in the UK, aged 21 years and above, have HD (Evans et al., 2013).

Progression of the disease includes abnormal movements, psychiatric disturbances, and cognitive decline, and often results in death within 20 years after the first signs are noticed. There is no cure. Therefore, the focus is on managing symptoms and quality of life.

Music therapy to enhance quality of life of these patients has been investigated (van Bruggen-Rufi and Roos, 2015). However, few studies have addressed the need to enhance quality of life of family caregivers (Ready et al., 2008).

Multiple issues can impact on family members, including loss, caring for someone with a progressive disease, and the potential for the gene to be expressed in others in the family. These present a significant need to provide support for the caregivers and patients.

The successful applicant will:

  • explore the needs of family caregivers of people with Huntington’s Disease, focussing on communication and its impact on social connection/isolation
  • develop a music therapy intervention designed to address these needs, with particular attention on supporting the communication function of the person with HD
  • test the efficacy of the intervention, gathering data to examine its efficacy including aspects such as its positive effect on managing the family caregivers’ level of distress and frustration
  • evaluate the feasibility of a larger study.

Dr Jonathan Pool specialises in music therapy research within the neurological populations and has also been working clinically with these populations for nearly 13 years. As a researcher and supervisor for doctoral candidates he is familiar with qualitative and quantitative paradigms and research methods, he has used mixed methods in his own research and managed clinical trials. He holds the Research Chair for the Independent Neurological Providers Alliance (INPA).

Prof Wendy Magee is based at Temple University in Philadelphia. She has published on music therapy to support Huntingdon’s Disease patients and has worked for many years as a music therapist at a leading institution caring for people with this condition. The teams within the INPA membership have extensive experience participating in research, assessment of people with HD and gathering data.

The methodological approaches appropriate to this study include qualitative, quantitative and mixed methods to gather data around intervention effectiveness and participant experience. Outcome measures may include standardised clinical assessment, questionnaires and interviews focusing on communication, resilience, quality of life, and quality of family relationship.

Quality outcomes include the publication of research manuscripts in peer-reviewed journals, recommendations for clinical practice published and disseminated to providers and people affected by HD, provision of data for estimating sample size of a larger study, and identification of future research ideas.

If you would like to discuss this research project prior to application, please contact jonathan.pool@aru.ac.uk

Apply online by 27 February 2022.

Funding notes

This successful applicant for this project will receive a Vice Chancellor’s PhD Scholarship which covers Home tuition fees and provides a UKRI equivalent minimum annual stipend for three years. For 2022/3 this will be £15,609 per year. The award is subject to the successful candidate meeting the scholarship terms and conditions. Please note that the University asserts the right to claim any intellectual property generated by research it funds.

Download the full terms and conditions.