Background

The Starlight Moment’s program was designed, and is delivered, in partnership with paediatric palliative care teams. It aims to provide day-to-day experiences that families may miss out on and for which there are traditionally few resources available in the healthcare system. Each “moment” is a tailored, positive experience, based on the interests and needs of each individual family with a palliative child or adolescent. It could be as simple as a catered family picnic or as creative as arranging a unicorn ride. Moments are delivered on an on-going basis, aiming to assist with memory-making, helping achieve family goals, and supporting family and community connection.

Aim

The aim of this on-going evaluation is to better understand the needs of parents/carers of palliative children and young people, by listening to and learning from their lived experience. The insights lead to further refinement of the Moments program. 

 

Methods

Semi-structured interviews are conducted with parents/carers. All families who have been involved with the Moments program for over six months are invited to participate. An inductive thematic analysis is used, with the themes forming the basis for reflection and program innovation.

Results/Findings

It is well recognised that a holistic approach to care is necessary in paediatric palliative care and that the role and support needs of the child’s family is vital. This presentation will share the findings from the initial 15 interviews conducted with families. It will outline key themes (such as the importance of sibling involvement, hope, and joy in the everyday) as well as share stories in the form of vignettes. We will also discuss how the findings from the interviews have been used as the basis for ongoing program refinement. By sharing these insights, we hope to explore the ongoing learning required for ensuring a quality service to families in need.