Assessment of Hope in Pediatric Oncology: Development, Content and Face Validation of a Parental Questionnaire

We outline the steps in creating and evaluating the content and face validity of the Questionnaire on Parental Hope in Pediatric Oncology (Q-PHPO), which measures the understanding of information provided by healthcare professionals (Part 1) and hope as experienced and perceived by parents (Part 2).

The development of the Q-PHPO was based on a literature review and 14 interviews with parents whose children had been diagnosed with cancer. The content and face validity were verified both quantitatively and qualitatively by assessing the clarity, relevance, and discomfort caused by the questionnaire, with input from expert parents (n = 7) and professionals (n = 10).

In terms of clarity, most items had an item content validity index (I-CVI) ≥ 0.80 and a kappa (K) value ≥ 0.74. Despite more nuanced results being obtained for relevance, most items had an I-CVI ≥ 0.70 and a K value ≥ 0.74. After revision, the first part of the Q-PHPO includes two dimensions: the child's illness (5 items) and the child's psychosocial well-being (4 items). The second part contains 20 items divided into three dimensions: the child's illness (6 items), the child's psychosocial well-being (9 items), and the parent's psychosocial well-being (5 items).

The results provide evidence of the content and face validity of the Q-PHPO. Further testing will confirm the questionnaire's construct and criterion validity and its reliability, making it a potentially valuable tool in pediatric oncology departments.

In this study, we adopted a Patient and Public Involvement and Engagement approach, actively involving patients, healthcare professionals, and researchers as key contributors to the development and evaluation of the Q-PHPO questionnaire. Parents of children in remission from leukemia and healthcare professionals provided valuable insights based on their lived experiences, influencing the content of the questionnaire, and contributed by assessing the relevance and clarity of the questionnaire items. Researchers specializing in questionnaire development and oncology reviewed and refined the instrument, ensuring its validity and suitability.