Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Development of a specialised, accessible telepsychology program for parents of children with hard-to-treat cancers navigating precision medicine (126516)

Brittany C McGill 1 2 , Kate Hetherington 1 2 , Ursula M Sansom-Daly 1 2 , Pernille E Bidstrup 3 , Beverley L Høeg 3 , Ariella Moldovan 4 , Darrin Batchelor 5 , Tania Rice-Brading 6 , Kate Wright 5 , Marion K Mateos 2 7 8 , Loretta MS Lau 2 7 8 , Antoinette Anazodo 2 7 8 , Glenn M Marshall 2 7 8 , Claire E Wakefield 1 2 9
  1. Behavioural Sciences Unit, School of Clinical Medicine, Discipline of Paediatrics and Child Health, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW, Australia
  2. Kids Cancer Centre, Sydney Children’s Hospital , Randwick, NSW, Australia
  3. Psychological Aspects of Cancer, Cancer Survivorship, Danish Cancer Institute, Copenhagen, Denmark
  4. Department of Psychology, Brain Tumour Rehabilitation Team, Sydney Children’s Hospital, Randwick, NSW, Australia
  5. Lived-experience advisor , Sydney, NSW, Australia
  6. Lived-experience advisor, Cooper Rice-Brading Foundation , Sydney, NSW, Australia
  7. School of Clinical Medicine, Discipline of Paediatrics and Child Health, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW, Australia
  8. Children’s Cancer Institute, UNSW Sydney, Sydney, NSW, Australia
  9. Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children’s Health, Palo Alto, California , USA

Background

Parents of children with hard-to-treat cancers (rare and/or <30% 5-year survival) experience complex psychological distress shaped by the high stakes of their child’s illness and uncertainty regarding prognosis and treatment. Although precision medicine is providing hope by advancing treatments for childhood cancers with previously limited options, psychological challenges for parents remain. Challenges include complex treatment decision-making, balancing hope with realistic expectations, supporting their child(ren), and navigating potentially prolonged anticipatory grief in the face of increased survival without cure. 

Methods

Our data from >200 families of children enrolled in PRISM, the clinical trial of Australia’s ‘ZERO Childhood Cancer’ precision medicine program, demonstrates >50% of parents report clinically-significant psychological distress, with 1 in 5 reporting unmet psychological support needs.

Driven by multidisciplinary and lived-experience partnerships, we have developed a specialised telepsychology program (ANCHOR: Adjusting to and Navigating uncertainty when Childhood Cancer is Our Reality) that can be flexibly delivered to meet parents’ support needs. ANCHOR is a five-module, psychologist-delivered program that uses evidence-based therapeutic techniques to enhance parent coping and resilience across three domains: living with uncertainty, managing difficult emotions, and supporting child(ren) in difficult emotions. Specialised psycho-educational content addresses the challenges of precision medicine, including complex decision-making.  

Impact on practice

Following evaluation and implementation in health/community settings, ANCHOR has potential to deliver high-quality, specialised care to support parents in the profoundly impacting and important role of caring for a child with likely life-limiting cancer. Taking a secondary-preventative approach, ANCHOR aims to curtail long-term negative psychological sequelae and improve family functioning in distressed families, including families who become bereaved.

Discussion

Parents of children with hard-to-treat cancers have access to advances in clinical care through precision medicine programs. We have developed ANCHOR to provide best-practice and accessible psychological support for parents walking the tightrope of hope and uncertainty.