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al. Association of infants exposed to prenatal Zika virus infection with their clinical, neurologic, and developmental status evaluated via the general movement assessment tool. JAMA Netw Open 2019; 2: e187235. 3 Nielsen-Saines K, Brasil P, Kerin T, et al. Delayed childhood neurodevelopment and neurosensory alterations in the second year of life in a prospective cohort of ZIKV-exposed children. Nat Med 2019; 25: 1213-17. 4 Faiçal AV, de Oliveira JC, Oliveira JVV, et al. Neurodevelopmental delay in normocephalic children with in utero exposure to Zika virus. BMJ Paediatr Open 2019; 5: e000486. 5 Carvalho AL, Ventura P, Taguchi T, et al. Cerebral palsy in children with congenital Zika syndrome: a 2-year neurodevelopmental follow-up.

When a child is diagnosed with a life threatening condition, one of the most challenging tasks facing healthcare professionals is to communicate this to the child, as well as to their parents or caregivers. Evidence-based guidelines are urgently needed for all healthcare settings, from tertiary referral centres in high income countries to resource limited environments in low and middle income countries, where rates of child mortality are high. We place this narrative review in the context of children's developing understanding of illness and death. We review the impact of communication on children's emotional, behavioural and social functioning, as well as treatment adherence, disease progression and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families and healthcare professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents and caregivers, generated from a workshop of international experts. Communication with Children and Adolescents about the Diagnosis of their own Life Threatening ConditionAlan Stein (AS) conceptualized and the designed the review. Louise Dalton (LD), Lucy Hanington (LH), Kim Fredman Stein (KFS) and AS undertook the literature searches and selected the studies. AS, LD and Elizabeth Rapa (ER) gathered the information from the studies and drafted the manuscript. Myra Bluebond-Langner (MBL), Sue Ziebland (SZ), Emily Harrop (EH), Ruth Bland (RB), Brenda Kelly (BK), Tamsen Rochat (TR) and KFS provided specific input to different sections of the manuscript; Communication Expert Group commented on drafts of the manuscript and contributed to the development of the guidelines. LD and ER compiled the tables. All authors have read and approved the final version of the Review. Conflict of Interest statementsEH declares she is deputy chair of the NICE clinical guideline development committee for NG61 (End of Life Care in Infants, Children and Young People). All of the other authors declare no Conflicts of Interest Role of funding sourceThe funder of the study had no role in any aspect of the review.

Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families’ needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of ‘saying goodbye’ in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’.

Communication with Children and Adolescents about the Diagnosis of a Life Threatening Condition in their Parent Many adults diagnosed with a life threatening condition have children living at home; they and their partners face the dual challenge of coping with the diagnosis while trying to maintain a parenting role. Parents are often uncertain about how, when and what to tell their children about the condition and are fearful of the impact on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Healthcare professionals play a key role in supporting and guiding parents and caregivers to communicate with their children about the diagnosis. However, the practical and emotional challenges of communicating with families are compounded by a lack of evidence-based guidelines. This narrative review considers children's awareness and understanding of their parents' condition, the effect of communication around parental life threatening condition on their wellbeing, factors that influence communication and the challenges to achieving effective communication. Children's and parents' preferences about communication are outlined. An expert workshop was convened to generate principles for healthcare professionals, intended as practical guidance in the current absence of empirically-derived guidelines.

Wellcome Trust.

Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives’ experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents ( n = 278, mean 53.4 years) tended to be female ( n = 216, 78%); over half were ‘son/daughter’ (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their ‘usual place of care’ ( n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of ‘not knowing’; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Background: Health and social care professionals’ ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. Aim: To explore health and social care professionals’ experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/participants: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March–June 2020) of the COVID-19 pandemic in the United Kingdom. Results: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. Conclusion: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.