A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making

Abstract

BackgroundCommunication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians’ views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child.MethodsQualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions.ResultsData analysis confirmed the acceptability and usefulness of the resource. Two major themes were revealed: 1. Family empowerment, with sub-themes Giving words and clarity, Conversation starter, ‘I’m not alone in this’, and A resource to take away, highlighted how the resource filled a gap by supporting and enabling families in a multitude of ways; 2. Not just for families, with sub-themes A guide for staff, When to give the resource?, How to give the resource and Who should give the resource?, explored the significant finding that participants viewed the resource as a valuable tool for themselves, but its presence also brought into relief potential gaps in communication processes around end-of-life care.ConclusionThe interview data indicated the positive reception and clear value and need for this type of resource. However, it is likely that successful resource uptake will be contingent on discussion and planning around dissemination and use within the health care team.

A scoping review and assessment of essential elements of shared decision-making of parent-involved interventions in child and adolescent mental health

“…Similarly, clinicians found interventions to be useful as it facilitated discussion. In pediatric health settings, health professionals welcome additional resources that provide access to information at the convenience of parents, and outside of the clinical session [ 78 ]. As a result of this, parents can be better prepared for appointments allowing for further discussions between parents and clinicians.…”

What instruments should we use to assess paediatric decision-making interventions? A narrative review

“…Eight studies evaluated the feasibility of the SDM intervention from the perspective of parents, seven evaluated from the perspective of the parents and healthcare professionals, one evaluated from the perspective of healthcare professionals (Delany et al, 2017) and two evaluated from the perspective of parents and the child patient (Feenstra et al, 2015; Robertson et al, 2019). All studies used purpose-designed questions to evaluate the feasibility of their intervention.…”

Decision-Making at End-of-Life for Children With Cancer: A Systematic Review and Meta-Bioethical Analysis

“…The lack of systematic teaching of the ethical and legal aspects of medicine is the fundamental reason for the difficulty in resolving ethical dilemmas at the end of life in the care of children with cancer. Ethical complexity and the availability of parental resources influence the physician when they are faced with the need to decide on life support (17). Other determinants that impact physician decision-making, particularly in the initiation of palliative care, include age, length of practice experience in pediatric oncology, and religious affiliation.…”

“…One challenge in addressing the particular needs of children in these situations is to avoid or decrease the prevalence of medical paternalism (20). This can be achieved through the incorporation of support resources for parents, such as texts or online tools that are based on their child's care decisions (17) (Table 4).…”