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

‘Wide awake and worried’ – A multi-perspective qualitative analysis of factors associated with parent sleep outcomes on the paediatric oncology ward. (126768)

Sarah J Ellis 1 2 , Ursula M Sansom-Daly 1 2 , Joanna E Fardell 1 2 , Elin Irestorm 1 3 , Phyllis Butow 4 , Ilona Juraskova 4 , Richard J Cohn 1 2 , Lauren Kelada 1 2 , Claire E Wakefield 1 2 5
  1. Behavioural Sciences Unit, Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW, Sydney, NSW, Australia
  2. Kids Cancer Centre, Sydney Children's Hospital, Sydney, NSW, Australia
  3. Faculty of Medicine, Department of Paediatrics, Lund University, Lund , Sweden
  4. School of Psychology, University of Sydney, Sydney, NSW, Australia
  5. Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics,, Stanford Medicine Children’s Health, Palo Alto, California, USA

Objective/purpose: In family-centred models of care parents are recognized as co-clients/co-recipients of care and encouraged, if not required to stay with their child in hospital. High levels of sleep disturbance have been identified in children hospitalised for cancer treatment and their in-rooming parents. This multi-perspective qualitative study aimed to explore the impact of staying on the hospital ward on parents’ sleep and functioning and identify modifiable factors which influence parents’ sleep in hospital.

Sample and setting: Participants included 12 parents of children ≤18years currently receiving treatment for cancer at Sydney Children’s Hospital (mean age=36.5 years, mothers=83.3%, mean nights slept in hospital =42.2, range=3-150 nights); and 14 healthcare professionals (HCP) (mean age=39.7 years, females=85.7%).

Procedure: We conducted semi-structured interviews with parents and HCPs from oncology, nursing, social work, and psychology. The data were transcribed verbatim and analysed using an inductive iterative approach involving matrix coding to compare responses between groups.

Results: Parents and HCPs reported significant changes to parents’ sleep after their child’s cancer diagnosis including reduced sleep quality and quantity, frequent night awakenings, and alternate sleeping arrangements/routines e.g., increased co-sleeping. Factors influencing parental sleep were categorised into six themes: (1) Child characteristics; (2) Medical/treatment; (3) Environmental; (4) Parenting role and supports; (5) Sleep-related behaviours; and (6) Psychological factors (cognitive/emotional). Poor sleep affected parents’ cognition, mood, anxiety, fatigue, relationships, and capacity to provide optimal care for their unwell child. All participants endorsed the need for personalised interventions and suggested a range of individual strategies and changes to clinical practice to improve parent sleep.

Conclusions and clinical implications: Multiple factors contribute to inadequate/disturbed sleep for parents on the hospital ward. Tailored interventions for parents, environmental adaptations, improved education for HCPs around sleep-promoting practices, and higher-level changes to health policy are required to address this issue.