Table 2.

Research priority topics and sub-topics.

Topics	Sub-topics
Epidemiology/population (including access to services)	Incidence and prevalence Access to services Needs Prevention Populations Stages of care
Measurement and assessment	Global outcomes (e.g. quality of life) Pain and breathlessness Sedation Antibiotics Psychosocial issues
Service delivery and models of care	Service delivery and models of care Settings of care: service delivery and outcomes  Inpatient versus outpatient  Home-based care  Virtual/tele-care Joint working  Shared care  Care coordination and intra/multi-agency working Transitions between service or care settings Palliative and end-of-life care: service models Patient experience Safety and quality  Infection control  Medication errors  Patient observation schedules  Staff patient ratios
Health interventions: pharmacological and/or invasive	Active treatments for conditions or prevention of complications Minimising impacts of treatments: preparation and pre-medication Respiration and ventilation (including weaning/withdrawal) Feeding and nutrition Survivorship and late effects Fertility
Symptom management and control	Symptom management Pain management strategies and practices (including weaning/withdrawal) Pain: non-pharmacological interventions Pain: drug trials
Other interventions: physical health and functioning	Management of musculo-skeletal function Continence Communication Sleep General physical health
Intervention adherence
Emotional and psychological issues	Coping and resilience Impacts, needs and experiences  Children and young people  Parents and carers  Siblings Support systems and structures Interventions
Participation and inclusion	Preventing discrimination and exclusion Independence and young adulthood Mobility
Communication and decision-making	Documenting care Communication between staff/within team Communication between staff and children/parents/families Treatment and care decision-making
Other family needs and support	Service organisation and provision Parents as carers Supporting self-management
Practices related to palliative and end-of-life care	Advance care planning and preparing for death Identification of best practice
Bereavement	Needs and support for children and young people Needs and support for parents and other family members
Ethics
Workforce	Retention and well-being Training and education
Funding research	Setting research questions Areas