Music Therapy Assessment for Advanced Huntington`s Disease ( MATA HD )Study and further music therapy clinical work

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Aims & Objectives

To provide an assessment tool for this specific client population which would be useful for music therapy clinicians and could be adapted for use by other allied health professionals. It was also deemed useful in terms of monitoring patient responses in order to clinically feedback to the wider therapy team.
Contact Details Rosanne Tyas Royal Hospital for Neuro-disabilty (RHN)

Funding Sources

Research funded by the Neuro-disability Research Trust- subsequent music therapy provision funded by the RHN charity.

Intervention Timescale  

The research was conducted over a two year period 2011- 2013 By Dr.Julian O` Kelley and Rebeka Bodak with input from Eirini Alexiou, Maura Quinn and Rosanne Tyas. Subsequent music therapy input is ongoing.
Location and Setting

The research group occurred on initially 3 specialist Huntington`s disease wards(HD)and then 2 wards in the hospital grounds. Music Therapy work continues on 2 wards.

Type of arts intervention

Music therapy group work –also incorporating sensory elements at times to re- inforce cognitive understanding and orientation to the environment.

Description of the arts activity

As part of the research protocol focus groups were set up to discuss the necessary areas that needed to be measured. It was compared with other tools ( United Huntington`s Disease rating scale, (Cummings et al. 1994; Kaufer et al. 2000),  Neuropsychiatric inventory questionnaire (Huntington Study Group 1996; Siesling et al. 1997),  and Behavioural observation scale Huntington`s, (Timman et al. 2005).  A number of assessors were used in addition to the therapists running the sessions.

The second stage measured the effectiveness of music therapy intervention.

Content of sessions: This forms the basis of present music therapy input 
A large ward -based session consists of a familiar hello song and song choices with visual aids of artistes. Patients` preferred music is either checked with the patient or the family. Patients` response to the visual aids is assessed in terms of their ability to focus on or track them as well as whether they are able to choose between two artistes verbally, by gesture or by eye pointing, nodding etc. Familiar live music is used to access emotionally meaningful long-term memories. There is careful choice of both the lyrics and emotional intensity of the music. The lyrics may trigger strong emotional responses and this is carefully monitored and sensitively responded to within the context or the large group setting. The emotional quality of the music can include wistful, lyrical melodies but also have some lively songs to shape the session. There is adjustment of the tempo, dynamics and intensity of the music to suit the individual. Encouragement is given to fill in words of songs which involves some sequencing and assists with accessing memory. Time is also given to discuss the pieces/artistes which is important for social interaction and has emotional value in terms of reminiscence work. A section or two is included for use of percussion instruments either to improvise to improvised music by the therapist or use of CDs. Liaison with occupational therapists ensures the safe and effective use of upper limbs. Sometimes a theme is used with sensory elements utilising scents, pictures, poems and further visual aids to aid contextual understanding.

Details of the project participants

People residing at the Hospital with mid- late stage Huntington`s disease. 19 patients` data was used in the study.

Project management

Conducted by By Dr.Julian O` Kelley and Rebeka Bodak with input from Eirini Alexiou, Maura Quinn and Rosanne Tyas. Advisors Dr. Wendy Magee and Dr.Michael Clinton.

O'Kelly & Bodak (accepted) The music therapy assessment tool for advanced Huntington's disease (MATA-HD): A pilot validation study. Journal of Music Therapy

Ethics and consent

Research ethics procedures were followed for the study with relevant involvement of relatives. Present music therapy input- patient sare given choice to attend or seen in their best interests if not able to consent.

Evaluation methods and findings

Use of focus groups, inter rata and intra rata reliability testing of the tool and cross reference with other tools as above. The study indicated that the MATA HD is a reliable measure of communication, cognition, emotion/mood, social behaviour, aggression and aggression and agitation during music therapy sessions. It also suggested that further research was needed to explore clinical effectiveness of music therapy cross referencing with quality of life measures and using with patients in earlier stages of the disease. 

Supported using public funding by the Arts Council England