Background:Communication between parents and their children about parental life-limiting illness is stressful. Parents want support from health-care professionals; however, the extent of this support is not known. Awareness of family’s needs would help ensure appropriate support.Aim:To find the current literature exploring (1) how parents with a life-limiting illness, who have dependent children, perceive health-care professionals’ communication with them about the illness, diagnosis and treatments, including how social, practical and emotional support is offered to them and (2) how this contributes to the parents’ feelings of supporting their children.Design:A systematic literature review and narrative synthesis.Data sources:Embase, MEDLINE, PsycINFO, CINAHL and ASSIA ProQuest were searched in November 2015 for studies assessing communication between health-care professionals and parents about how to talk with their children about the parent’s illness.Results:There were 1342 records identified, five qualitative studies met the inclusion criteria (55 ill parents, 11 spouses/carers, 26 children and 16 health-care professionals). Parents wanted information from health-care professionals about how to talk to their children about the illness; this was not routinely offered. Children also want to talk with a health-care professional about their parents’ illness. Health-care professionals are concerned that conversations with parents and their children will be too difficult and time-consuming.Conclusion:Parents with a life-limiting illness want support from their health-care professionals about how to communicate with their children about the illness. Their children look to health-care professionals for information about their parent’s illness. Health-care professionals, have an important role but appear reluctant to address these concerns because of fears of insufficient time and expertise.

This paper explores two interlinked components of practitioner's support to children when a parent or carer is at the end of life or has died. The primary issue relates to communication and the competence and confidence of practitioners when working with this community of children. The paper suggests that related to this is the lack of training practitioners receive, both as students and through continual professional development, within the fields of social care and health. The metaphor of the elephant in the room is used to delineate how practitioners avoid such discussions and thereby miss opportunities to support children experiencing potentially the most traumatic life event they have faced. Drawing on current research and the author's experience and reflections as a researcher and practitioner the paper suggests that children experiencing the death of a parent or carer are not being recognized as children in need but rather requiring interventions from specialist services.

Background: Although the death of a parent during childhood is relatively commonplace, the voices of children affected by parental life-limiting illness are under-represented in research evidence. Guidance for healthcare professionals is largely based upon professional opinion rather than the experience of children themselves. Aim: To synthesise and appraise the literature from primary research with children about their experience of having a parent with a life-limiting illness. Design: Integrative review and thematic synthesis. Registered on PROSPERO (CRD42019094581). Data sources: PsychINFO, Medline, Embase, Scopus and Web of Science were searched, supplemented by searches of grey literature and systematic reviews. There were no restrictions on publication date, and study quality was appraised using the Hawker checklist. Studies reporting the findings of primary research with participants under 18, whose parent has a life-limiting illness, were eligible for inclusion. Results: Twenty-one papers met the inclusion criteria ( n = 13 qualitative; n = 8 quantitative), reporting on n = 18 studies from high-income countries. Findings reveal that throughout parental life-limiting illness, children strive for agency, but are often shielded and excluded by adults. The experience of living with a dying parent is emotionally demanding for children and involves significant caregiving responsibilities. However these children are not passive, developing strategies to cope with the situation and wanting to be involved. Conclusions: The review has enabled the voices of children affected by parental life-limiting illness to be heard and will inform the development of guidance for parents and professionals.