Primary Caregivers' Knowledge, Attitudes and Beliefs toward Palliative Care for Children with Cancer

Abstract

Parents’ knowledge, attitudes and beliefs (KAB) toward Pediatric Palliative Care (PPC) in children with cancer remain underexplored, especially in Low and Middle Income Countries (LMICs) where the care relies heavily on family involvement. This two-phase multicenter study examined primary caregivers’ KAB toward PPC for children with cancer in order to uncover areas for improvement. The first and second phases share a common specific aim to culturally validate instruments measuring the concepts of interest. The specific aims of the second phase included describing the current primary caregivers’ KAB toward PPC for children with cancer, determining the factors associated with primary caregivers’ KAB and identifying the primary caregivers’ tasks in PPC for children with cancer. In the first study phase, cultural adaptation, content validation and pilot testing of the questionnaire were conducted. The items were newly developed or taken from previously validated tools such as the Memorial Symptom Assessment Scale and the Palliative Care Knowledge Scale. After two independent forward translations and one back-translation, ten experts in pediatric oncology and palliative care evaluated the questionnaire for content validity and cultural appropriateness. The questionnaire was then piloted through structured interviews via WhatsApp with twenty primary caregivers of children with cancer. The main study used a quantitative cross-sectional descriptive design. A sample of 105 participants from three major pediatric oncology centers in Lebanon completed the study. Data were collected through structured interviews via WhatsApp using the questionnaire validated in the pilot phase. The experts’ reviews revealed excellent Content Validity Index (CVI) for the items (CVI=0.8-1) and the overall survey (CVI=0.99). The sample in the pilot study evaluated the survey’s ease, length, clarity, wording and language. Preliminary data was obtained. In the main study, the psychometric analysis of different survey sections yielded satisfactory results for the PPC attitudes scale (Exploratory Factor Analysis revealed a three-factor structure with satisfactory Cronbach’s alpha coefficient). Results of the main study results suggested that, few primary caregivers have heard about PPC (n=18, 17.1%) and only 2% had accurate information about it. When given a brief description of PPC, more than 90% demonstrated positive attitudes (Mean attitude above 4) toward the care and recommended its integration at the start of cancer treatment. “Religious and spiritual commitment” was the most common strong facilitator and “Overwhelming negative emotions” was the most common strong barrier to integrating PPC at the individual level. Participants, on average, engaged in 22.1 activities within PPC, even without recognizing the medical term. The bivariate and regression analysis suggested significant associations of knowledge, attitudes and beliefs with several demographic and clinical factors. Examining parents’ KAB toward PPC in LMICs, such as Lebanon, enhances knowledge and potentially informs practice in these regions. This study promoted PPC understanding, highlighted factors influencing KAB toward PPC, and provided evidence on psychometric properties of novel instruments used among parents of children with cancer.