Language validation of a measurement instrument to assess the needs of parents and children in palliative care – a pilot study

Abstract

Introduction: Pediatric palliative care is a specialized form of care provided to children with terminal illnesses or life-threatening conditions. Its aim is not only to control symptoms, but also to improve the overall quality of life of the child and its family. It includes comprehensive support and care that respects the individual needs of the child and its family, including physical, emotional, social, and spiritual aspects. Objective: To translate and implement the language validation of the Pediatric Palliative Care – Parent & Child Needs Survey (PCNeeds) tool and to determine the level of needs of families caring for a child with a life-limiting or life-threatening illness. Methods: To determine the needs of parents of children in palliative care, a quantitative method of a questionnaire survey was used in which 20 parents participated. Data analysis was carried out using descriptive statistics. Results: The highest level of needs of families was in the area of coping with the child’s symptoms, including pain. Parents felt emotional strain, social isolation, and overall pressure on the family, including financial burden. However, they also expressed a high degree of satisfaction in many areas, such as communication with health professionals, clarity of information, and the relationship with their child. Conclusion: The study demonstrated the high internal consistency of the Czech version of the PCNeeds measurement instrument. It will be further tested for psychometric properties in the next stage of the research.