Online information support for improving caregiving knowledge and coping self efficacy among parents of children with Haematological cancer

Parents of children who are diagnosed with haematological cancers, such as leukaemia and lymphoma, experience stress as they need to care for and support their child throughout the treatment period. Information support is the provision of relevant information to meet these parents’ information needs, which enables them to provide care for their child and to cope with stress. The feasibility of using e-Health as a method of delivering information support has not been adequately explored. The objective of this study was to design, develop, and evaluate the feasibility and preliminary effectiveness of an online learning portal, e-Haematological Oncology Parents Education (e-HOPE), to provide information support to Malaysian parents of children with leukaemia or lymphoma. E-HOPE was a comprehensive Malay language caregiving education resource which was delivered via an e-Health approach. The study consisted of four phases. First, an exploratory qualitative needs assessment study was conducted to explore the childhood cancer parents’ information support needs among a sample of parents of children with cancer (n = 14) and healthcare professionals (n = 8). Thematic analysis of the in-depth interviews showed that parents had broad information needs which should be provided in an easily understood manner. Next, a baseline cross-sectional survey was conducted among 173 parents of children with leukaemia or lymphoma to determine their caregiving knowledge and coping self-efficacy. The mean score for caregiving knowledge was 11.99 from a maximum score of 18. Multiple linear regression showed that parent’s gender and education status predicted caregiving knowledge. The mean score for coping self-efficacy was 196.03 from a maximum score of 260. Coping self-efficacy was not associated with caregiving knowledge. Subsequently, findings from the needs assessment phase and Cognitive Load Theory informed the design and development of e-HOPE. E-HOPE demonstrated good content validity. Finally, a parallel open-label randomised controlled feasibility trial was conducted among Malaysian parents of children with leukaemia or lymphoma (N = 51) to evaluate the feasibility of e-HOPE for information support. The recruitment rate was 3.64 participants per month and the dropout rate was 49.0%. The results showed that a definitive trial was feasible with some amendments to increase the number of study sites and prolong the recruitment period. Study sites needed good internet connectivity for parents use in the ward. E-HOPE and usual care did not result in a significant change in both caregiving knowledge and coping self-efficacy at Week-8. Parents in the intervention arm (n = 18) reported that e-HOPE was of good quality with Web Evaluation Questionnaire (WEQ) dimension scores ranging from 4.30 to 4.89, of a maximum score of 5. In conclusion, use of an online learning platform such as e-HOPE is feasible to deliver information support to parents of children with haematological cancer. A definitive trial would be required to determine its effectiveness in improving caregiving knowledge and coping self-efficacy among parents of children with leukaemia or lymphoma.

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