Concordance between couples reporting their child's quality of life and their decision making in pediatric oncology palliative care.

In children 18 years and younger with cancer and no reasonable chance for cure the authors used a cross-sectional study design to (1) describe concordance between fathers' and mothers' evaluation of quality of life (QoL) and (2) determine parental correlation for how factors such as hope, anticipated QoL, and prolonged survival time influence decisions between supportive care alone versus aggressive chemotherapy. Both parents of 13 children performed PedsQL 4.0 Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. Concordance was assessed using intraclass correlation coefficient (ICC). Parents reported preferences of supportive care versus aggressive chemotherapy in a hypothetical scenario and rated factors that influenced decision making. Concordance was variable across QoL domains, better for physical health (ICC = 0.46), nausea (ICC = 0.61), general fatigue (ICC = 0.50), and sleep/rest fatigue (ICC = 0.76). Correlation was variable between parents on the influence of factors on their decision, with particularly poor correlation for importance of hope (r = -0.24). Variable concordance was reported between parental assessment of child QoL and factors influencing their decision making, suggesting parents may have different perspectives in decision making and that understanding both is important in clinical care.

Challenges to participation in paediatric palliative care research: a review of the literature.

It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team.