Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent

doi:10.1016/S0140-6736(18)33202-1

Review

. 2019 Mar 16;393(10176):1164-1176.

doi: 10.1016/S0140-6736(18)33202-1. Epub 2019 Mar 14.

Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent

Louise Dalton¹, Elizabeth Rapa¹, Sue Ziebland², Tamsen Rochat³, Brenda Kelly⁴, Lucy Hanington¹, Ruth Bland⁵, Aisha Yousafzai⁶, Alan Stein⁷; Communication Expert Group

Collaborators, Affiliations

Collaborators

Communication Expert Group:
Theresa Betancourt, Myra Bluebond-Langner, Catherine D'Souza, Mina Fazel, Kim Fredman-Stein⁸, Emily Harrop⁹, Daniel Hochhauser, Barbara Kolucki, Aoife C Lowney, Elena Netsi, Linda Richter

Affiliations

¹ Department of Psychiatry, University of Oxford, Oxford, UK.
² Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
³ Department of Paediatrics, School of Clinical Medicine, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; Human Sciences Research Council, Johannesburg, South Africa.
⁴ Nuffield Department of Women's and Reproductive Health, University of Oxford, Oxford, UK; Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
⁵ School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; Institute of Health and Wellbeing, Glasgow, UK; University of Glasgow and Royal Hospital for Children, Glasgow, UK.
⁶ Harvard T H Chan School of Public Health, Boston, MA, USA.
⁷ Department of Psychiatry, University of Oxford, Oxford, UK; School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa. Electronic address: [email protected].
⁸ Department of Psychology, University of Bath, Bath, UK.
⁹ Helen & Douglas House, Oxford, UK.

PMID: 30894272
DOI: 10.1016/S0140-6736(18)33202-1

Review

Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent

Louise Dalton et al. Lancet. 2019.

. 2019 Mar 16;393(10176):1164-1176.

doi: 10.1016/S0140-6736(18)33202-1. Epub 2019 Mar 14.

Authors

Louise Dalton¹, Elizabeth Rapa¹, Sue Ziebland², Tamsen Rochat³, Brenda Kelly⁴, Lucy Hanington¹, Ruth Bland⁵, Aisha Yousafzai⁶, Alan Stein⁷; Communication Expert Group

Collaborators

Communication Expert Group:
Theresa Betancourt, Myra Bluebond-Langner, Catherine D'Souza, Mina Fazel, Kim Fredman-Stein⁸, Emily Harrop⁹, Daniel Hochhauser, Barbara Kolucki, Aoife C Lowney, Elena Netsi, Linda Richter

Affiliations

¹ Department of Psychiatry, University of Oxford, Oxford, UK.
² Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
³ Department of Paediatrics, School of Clinical Medicine, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; Human Sciences Research Council, Johannesburg, South Africa.
⁴ Nuffield Department of Women's and Reproductive Health, University of Oxford, Oxford, UK; Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
⁵ School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa; Institute of Health and Wellbeing, Glasgow, UK; University of Glasgow and Royal Hospital for Children, Glasgow, UK.
⁶ Harvard T H Chan School of Public Health, Boston, MA, USA.
⁷ Department of Psychiatry, University of Oxford, Oxford, UK; School of Public Health, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa. Electronic address: [email protected].
⁸ Department of Psychology, University of Bath, Bath, UK.
⁹ Helen & Douglas House, Oxford, UK.

PMID: 30894272
DOI: 10.1016/S0140-6736(18)33202-1

Abstract

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 effect on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Health-care professionals have 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 scarcity of evidence-based guidelines. This 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 health-care professionals, intended as practical guidance in the current absence of empirically derived guidelines.

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Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent

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Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent

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