Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and...

Area of Science:

• Palliative Care
• Healthcare Interventions
• Programme Theory

Background:

• Paediatric palliative and hospice care is increasingly vital for children with life-limiting conditions.
• There is a growing need for effective outcome evaluation of these complex healthcare interventions.
• Theory-based evaluations are emerging as a key method for understanding intervention mechanisms.

Purpose of the Study:

• To describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria.
• To provide a reflective account of the programme theory development process.
• To support outcome evaluation and reflective practice in paediatric palliative care.

Main Methods:

• Utilized a combination of theory-based evaluation frameworks.
• Constructed a programme theory with action and change components through multiple iterations.
• Incorporated diverse stakeholder perspectives and knowledge sources to theorize programme mechanisms.

Main Results:

• The programme theory details causal mechanisms and outcomes for children and families.
• Interventions trigger coping and adaptation, enhancing physical, psychological, social, and spiritual wellbeing.
• Trust, partnership, and person/family-centered approaches are key enabling factors.

Conclusions:

• The study offers insights into the workings of specialist paediatric palliative care programmes.
• Findings aid in demonstrating the impact of care, improving outcome evaluation.
• This work contributes to enhancing specialized paediatric palliative and hospice care services.