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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’.
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