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

Summary

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.

Introduction

Many adults diagnosed with a life-threatening condition are parents with children living at home. In the USA alone, it is estimated that 2·85 million children (18 years or younger) are living with a parent who has been diagnosed with cancer.¹ In low-income and middle-income countries (LMICs) life-threatening conditions affect even more families; WHO estimates that 70% of deaths from cancer worldwide occur in LMICs.² Life-threatening infections such as HIV are also more common in LMICs, with sub-Saharan Africa the most severely affected with nearly one in every 25 adults living with HIV.³ In parts of Southern Africa over a quarter of pregnant women are HIV-positive.³ With Prevention of Mother to Child Transmission programmes,⁴ the vast majority of their children are HIV-negative but are born into families where at least one parent is HIV-positive. Although treatment advances for HIV have markedly improved long-term prognosis, daily medication and frequent clinic appointments are still required. Furthermore, over one million people died of HIV in 2016, largely because of limited access to adequate treatment.⁴

Parental life-threatening conditions have an effect on the physical, social, and emotional wellbeing of children. A large cohort study of over 60 000 children in Finland found significantly higher use of psychiatric services by children who had been affected by parental cancer before the age of 21 years than in those who had not been affected.⁵ In low-income settings, parental illness or death can even affect child survival; in rural South Africa the risk of mortality for children under 5 years increased both after their mother had died and in the months before her death.⁶ Parents with life-threatening conditions face the dual challenge of coping with their diagnosis and treatment, while maintaining their caregiving role. Parents might feel unsure about how to talk to their child and how much information to share with them, while also wanting to protect their child from distress. Parents would benefit from clear guidance and support from health-care professionals about how to approach these topics with their children. However, when a parent is ill, the health-care professionals involved are primarily focussed on the adult patient. They might never have direct contact with the patient's children or be aware of the effect of the illness on the wider family. Indeed, many might be unsure about whether considering the needs of the patient's children forms part of their role. It can be difficult for health-care professionals treating adults to raise the issue of children's understanding of parental illness and the importance of communicating with them about the illness; this challenge can deny parents much needed resources and support. Empirically based, parent or caregiver-focused recommendations are largely scarce,⁷ making this emotionally challenging task especially difficult for health-care professionals.

Given the scale of the global burden of life-threatening conditions affecting parents, and the absence of evidence-based guidelines to support health-care professionals and families to communicate the diagnosis to children, we aimed to address four main questions. First, what is the evidence that communication with children about parental life-threatening conditions is important? Second, what is the effect of communication on children and adolescents' emotional, behavioural, and health outcomes? And what is the effect of communication on parents and the wider family system? Third, what factors influence the process of communication? And what are the barriers and challenges to communication? Fourth, what are the reported preferences of children, adolescents, and parents about the way that diagnosis and information is conveyed?

The outcomes of this Review and previously published recommendations⁸ formed the basis of discussion at a workshop of international experts in 2017 to generate a framework of communication principles to address the scarcity of evidence based guidelines. The methods used are described in the appendix.