Abstract
The purpose of this study was to translate and validate a questionnaire to be used by children with chronic diseases during procedures. Specific research questions were as follows: Is the translated versions reliable? Is there a correlation between VCM and another questionnaire measuring discomfort to enhance the validity of VCM? The three versions of Visual CARE measure (VCM) were translated following the principles of good practice for translation and cultural adaptation of patient-reported outcome measures, according to the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Cognitive debriefing interviews with children, parents, and healthcare professionals were carried out. The correlation between empathy and discomfort was evaluated using DISCO-RC. The final versions of VCM were administered to children and their parents after a needle procedure or a nasal tube insertion. The Cronbach’s alpha was 0.89 for the 5Q version, 0.93 for the 10Q version, and 0.96 for the 10Q-Parent version, which implies high internal consistency. The intra-class correlation was 0.623 for VCM 5Q, with a mean difference of 1.35 and an ICC of 0.767 for VCM 10Q, with a mean difference of 1.17. This is considered a good agreement between children’s and their parents’ assessments. A significant difference in the children’s reports could be seen when experiencing high discomfort as opposed to low discomfort.
Conclusion: VCM is a useful Patient-Reported Experience Measure (PREM) that can help enhance the quality of care for children in a paediatric setting by capturing their perception of the empathy shown.
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What is known:
• Parents’ by-proxy reports are not always aligned with children’s self-reports. In healthcare situations, children can be hurt when they are ignored.
• Research shows that empathic encounters relieve distress, improve the relationship between the patient (who could be a child) and carer, and create an open, trusting relationship.
What is new:
• This study shows that all three versions of the Visual CARE Measure are valid for assessing children’s experience of empathy shown by nurses during a procedure..
• This is one of the first studies that confirms the correlation between children’s experience of nurses’ levels of empathy and the child’s discomfort.
• This study shows that the Visual CARE Measure can support the evaluation of children’s rights with regards to communication in a clinical context.
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