Author: Dr Kathryn Gillespie, Queen’s University Belfast

Published: September 2022

Keywords: Music therapy; arts-based therapy; end of life; palliative care; bereavement; carers; family

Have you ever found yourself becoming emotional at a certain song or piece of music? Maybe you have discussed which songs you would want played at your funeral, or considered which music really matters to you.

COVID-19 and music
Over COVID-19 lockdowns, the importance of music and sound to communication and expressing emotion was clear. You may have taken part in the “Clap for Our Carers” movement or seen images of apartment residents in Italy and elsewhere singing to each other from their balconies at the height of lockdown.

COVID-19 has been described as an event of mass grief. Culturally, music often plays a central role in mourning processes globally (Giménez-Llort, 2022). Perhaps you keenly felt the absence of certain musical experiences in your life over lockdowns, for example, when singing at funerals was restricted.

Why music therapy?
Music therapy uses the power of music and sound to work therapeutically with a wide range of people (The Music Therapy Charity, 2014). This type of therapy is receiving increased attention for its potential ability to improve people’s lives.

One aspect of this is making positive impacts on the experiences of those who care for people before they die. I work as part of a research team exploring music therapy for informal carers before and after the death of their loved one.

Why informal carers?
Informal carers are people who provide unpaid care to a friend or family member who needs support. Prior to the pandemic, approximately one in eight adults in Ireland (Family Carers Ireland, 2022) was an informal carer. Many of these carers do, or will at some point, provide end of life care for the person they are caring for. 

These carers can encounter unique challenges, including impacts on their mental health. Experiences can be particularly distressing in the period before and after their loved one dies. For some carers, grief may seriously impact their everyday lives in the longer term, including their mental health and ability to participate in social activities. We are exploring if music therapy has a role in helping to support informal carers to better process their grief.

Why this topic?
There are many possible ways in which music therapy can be delivered with this group. For example, a music therapist can play meaningful songs to help a dying patient and their carer reminisce about happy memories together. After a patient has died, a carer may find ways to express their emotions through other activities delivered by a music therapist, such as group therapeutic song writing with other bereaved carers. 

There isn’t a lot of existing research on how music therapy can help informal carers pre- and post-bereavement, and this service rarely receives funding from health and social care. Our research team at Queen’s University Belfast has been trying to address this in two main ways through the ‘MusiCARER Project’ (funded by the Music Therapy Charity).

What did we do?
First, we looked at research which has already been done on music therapy for informal carers of people at end of life to see what we could learn. The next step was bringing international experts together to share what we found and discuss future research in the area.

International workshop event
On 25^th May 2022, we hosted an online workshop event. Sixteen researchers and music therapists joined us from four different continents, seven countries (United Kingdom, USA, Canada, Australia, Spain, Israel and Serbia), and eight different time zones.

Our aim was to develop key directions for future research in the area, and to consider any challenges and how these can be overcome. The end goal is to ensure that further research in the area addresses the most important questions (it is useful and is of high quality (it is evidence that can be relied upon).

World Café
We chose to use an online World Café approach for our event. This is a way to host discussions with large groups of people, and allowed us to learn from the combined intelligence and experience of the group. Participants were encouraged to join with a tea or coffee, and to share their views and experiences as if they were sitting at virtual café tables together.

What did we find?
Some key findings include that it is important to agree what informal carers of people at end of life need from music therapy. We also need to use research methods that can detect and show what a positive impact looks like.

Music therapy must be seen as personal and individual; it cannot be offered in a one-size-fits-all way. It is more helpful to think of the music therapist supporting the carer on their grief journey than offering a standard treatment. Research duration should be long enough to see how music therapy may support participants in the longer term.

It is important to involve informal carers in decision-making processes about how music therapy might be delivered for this group. However, conversations in this area can be sensitive, and it is important to look after participants’ emotional needs, for example, by having a plan for how to support them if they become distressed during research. This may also be an emotionally challenging area for researchers, and their needs should also be considered.

Conclusion
This was a unique opportunity to hear directly from many of the people whose work we had come across while looking at existing research in music therapy. There was so much knowledge shared by the participants, who included expert researchers and music therapists. It was clear that all participants worked from a compassion-based approach when supporting people with palliative care needs and their carers.

What next?
We are currently writing about the findings in detail and hope to publish these later this year. We hope that these will help to guide anyone interested in research in this area, including ideas on what to focus on and how to decide which methods to use.

We hope to use the learning from the ‘MusiCARER’ project to inform the development of a bereavement focused music therapy intervention which we will evaluate in a large trial. If you would like to keep up to date on progress with the project, please see our website here (https://www.qub.ac.uk/schools/psy/Research/OurResearchThemes/HealthWelfareClinicalPsychology/MusiCARER/).