We are proud to be a partner and research site of Sound Origins.
Sound Origins is a research study spear-headed by Kirsty Jane, a Doctoral Clinical Academic Fellow and Specialist Neonatal Music Therapist at UCLH Charity, the official charity of UCLH in collaboration with Noah’s Ark Children’s Hospice. In 2022, in her role as Therapies Team Manager and Neonatal Lead at Noah’s Ark Children’s Hospice, Kirsty worked with Rupert, Elmira and their baby son, George. George was diagnosed with surfactant deficiency (R192), a rare genetic disorder that causes breathing problems. Kirsty supported the family with Music Therapy (MT) on the neonatal unit at University College London Hospital (UCLH) and at the end of George’s life at home. Kirsty wrote a case study on her work with George which was published in a clinical journal. Kirsty’s work with the family was the starting point of a study looking to connect parents with babies with uncertain futures on neonatal units through sound and song.
The study aims to standardise the practice of MT on neonatal units by co-designing an approach to music therapy which is accessible and acceptable to parent with infants with uncertain futures and staff on neonatal units. The study acknowledges the trauma that parents and staff endure on the unit and considers ways of supporting parents to bond with their babies during times of uncertainty
Kirsty started the project by recruiting an advisory group for the study that included parents with lived experience, neonatal professionals and charity representatives (Noah’s Ark Children’s Hospice parents with lived experience, Peeps HIE Charity and Camp Simcha). This group advised on participant recruitment, focus group and survey design helped to consider the appropriateness of all aspects of the study. The interviews and focus groups were then held with parents and neonatal staff in London and Manchester and explored experiences of neonatal units and cultural connections to music.
All data was then reviewed collaboratively with neonatal healthcare professionals and parents with lived experience to understand experiences and categorise results. Top-line findings are outlined in the January 2025 edition of the Sound Origins Newsletter with the full findings being published later this year. Kirsty is currently working on the ethics for the testing phase of the study, which will then be tested in September at UCLH with the ambition that this method of care becomes embedded across all neonatal units. Kirsty will also be presenting the survey phase of the study at the Together for Short Lives Conference in May 2025.
The project is funded by NIHR and is a partnership between Kings College London, Noah’s Ark Children’s Hospice and UCLH.
The following charities also contributed to the study;
- Across Ummah – Research Site
- Alexander Devine Children’s Hospice – Recruitment
- Bluebellwood Children’s hospice – Recruitment
- Camp Simcha – Stakeholder
- Chestnut Tree House Children Hospice – Recruitment
- Caribbean and African Health Network – Recruitment
- Demelza Children’s Hospice – Recruitment
- Haven House Children’s Hospice – Recruitment
- Jolly Josh – Research Site
- Noah’s Ark Children’s Hospice – Research Site
- PEEPS-HIE – Stakeholder
- Rainbows Children’s Hospice – Recruitment
- Shooting Star Children’s Hospice – Recruitment
You can find further information via the links below:
Details of the study HERE
Sound Origins Newsletter, January 2025 HERE
The case study on Rupert, Elmira and George HERE
Kirsty has also collaborated with two parents on a chapter of a book – Music Therapy in Children’s Palliative Care: Collaborative Family and Practitioner Voices : Kammin, Victoria, Russell, Julie – which is available at end of March 2025.