RESUMEN
BACKGROUND: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process. METHODS: We drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders' perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes. RESULTS: The programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors. CONCLUSIONS: Our findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Pediatría , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos al Final de la Vida/organización & administración , Pediatría/métodos , Desarrollo de Programa/métodos , Niño , Evaluación de Programas y Proyectos de Salud/métodos , Calidad de Vida/psicologíaRESUMEN
CONTEXT: The Nausea and Vomiting Management Barriers Questionnaire (NVMBQ) measures patient-related barriers to antiemetic medication. OBJECTIVES: The primary aim of this study was to test the construct validity, internal consistency, and content validity of the NVMBQ. The secondary aim was to develop a shortened version of the NVMBQ. METHODS: A quantitative secondary data analysis from a previous cross-sectional study of the NVMBQ (n = 299) was performed. It included analyses of descriptive data, factor structure, internal consistency, and patient comments. Content validity was established with 10 experts (including patients, nurses, physicians, and scientists) using the item-wise content validity index and the scale CVI (S-CVI). RESULTS: The exploratory factor analysis revealed eight underlying dimensions that were mostly congruent with the hypothesized structure when developing the NVMBQ. Internal consistency was high (α = 0.90). More than 70% of the items were estimated as relevant by the experts. However, the S-CVI was moderate (S-CVI = 0.74). A 14-item short version of the NVMBQ was identified. Qualitative analysis suggested the inclusion of additional clinically relevant items (e.g., the inability to take oral antiemetics if nausea was already present). CONCLUSION: The NVMBQ provides a good basis for assessing patient-related barriers to chemotherapy-induced nausea and vomiting management. We will use the resulting and translated NVMBQ in a larger study to assess the relationships between chemotherapy-induced nausea and vomiting, patient-related barriers, and current antiemetic regimens.