Sound Origins: co-designing a Music Therapy program to improve key aspects of continuing bonds for parents of infants with life-limited infants in the neonatal unit setting

Background In 2021 there were 1,994 infant deaths in England(50). Deaths of children (1).

Admission to a neonatal intensive care unit results in 1 in 4 parents experiencing symptoms of Post-Traumatic Stress Disorder post-discharge(51).

This is further compounded when the infant is given a life-limited diagnosis, heightening parents' awareness of the proximity of death and impacting their self-efficacy.

Consequently, parent's ability to engage with their infant is compromised, limiting their opportunity to experience moments of connectedness(2).

These moments are key to developing parent-infant bonds which supports parents to engage with the infant's care in life or support them in their grief when the infant dies.

This study will co-design a culturally aware, music therapy (MT) program collaboratively with a) parents with lived experience of having an infant with life-limited diagnosis in the neonatal stage and b) health care professionals.

The program will be accessible and acceptable to a diverse population and will improve parents' engagement with their infants.

Appropriate measures of parental identity and expressive capability will be explored in preparation for a future pilot study.

Methods: The study will comprise three phases following the MRC Framework for Developing and Evaluating Complex Interventions(52): a) a systematic review of psychosocial support provided for parents of life-limited infants in the first year of life.

A national survey and a series of focus groups with parents with lived experience of a life-limited infant will provide an understanding of the cultural connections to music and challenges of the neonatal experience. Areas of potential support MT could provide will then be discussed.

A separate focus group for neonatal healthcare professionals will provide understanding for how best a MT intervention could provide support to staff on a unit. b) Thematic analysis of focus group discussions will be undertaken, and the findings considered in relation to personality and attachment theories and the 'Time Together' program(43,39,20).

These empirical and theoretical findings will inform the co-designed MT program. c) Four families at University College London Hospital will test a prototype of the program. Jointly with the researcher, parents will review video footage of their experiences and then be interviewed. Qualitative analysis of the interviews will provide insights to enable a further iteration of the program.

Staff participating in the care of infants will evaluate the programs' impact on the infant, parent, and environment.

Appropriate measures for assessing parents' sense of identity and expressive capability will be explored and a protocol for a future pilot study finalised.

Impact of research This study will develop the first culturally aware MT program for parents of life-limited infants which will improve parental engagement, supporting their developing and continuing bonds with their infant.

If formal evaluation of the co-designed program shows the programme to be cost-effective, it will be able to be implemented across all neonatal units providing equity of mental health and bonding support to UK families.