Communication with Children and Adolescents about the Diagnosis of Their Own Life-Threatening Condition

"The global prevalence of life-threatening conditions in children makes it an urgent priority to develop robust, child-focused communication guidelines and a research agenda to address the limitations and gaps in the literature."

Given the scale of the global burden of life-threatening conditions involving children and the absence of evidence-based guidelines to support healthcare professionals and families to communicate the diagnosis, especially those in low- and middle-income countries (LMICs), this Lancet article, one in a series (see Related Summaries, below):

• reviews the literature and provides communication principles and examples based on the authors' own clinical and academic perspectives;
• examines the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships;
• considers the factors that influence the process of communication and the preferences of children, families, and healthcare professionals about how to convey the diagnosis;
• explores barriers and challenges to effective communication; and
• outlines principles for communicating with children, parents, and caregivers, generated from a workshop of international experts.

As the authors explain, healthcare philosophy about sharing information with children regarding their illness and prognosis has changed substantially since 1950. Until the 1960s, prevailing practice was to withhold the diagnosis, or its life-threatening nature, to protect children from distress. Over subsequent decades, the importance of disclosure was increasingly recognised, resulting in a more nuanced and personalised consideration of what, when, and how much a child should be told about their diagnosis. Furthermore, acknowledgement that the whole family is affected when a child is unwell has resulted in adoption of family-centred models of paediatric care. The traditional relationship between doctors and patients has also changed, causing a shift in the doctor's role to promote patient empowerment and shared decision making.

The article discusses cognitive and emotional developmental stages and conceptualisation of a life-threatening condition. For example, there is a substantial increase in the salience and influence of peers in adolescence; establishing and maintaining peer group identification is complicated by social isolation due to periods of inpatient treatment, or feeling or looking different because of the life-threatening condition. Panel 1 shows the chronology of acquisition of concepts of death beginning at approximately age 5 years, with full understanding around 10 years.

As noted here, culture and traditions, ethnicity, and religious and spiritual beliefs also influence children's and parents' or caregivers' perspectives on the meaning of death and illness (e.g., possible reluctance in Catholic communities to disclose the life-threatening condition because it could preclude hope and faith). Conceptual understandings of death vary widely worldwide (e.g., a study in South Africa that described how death can be seen as a transformational experience in which communication remains possible with deceased family members). The way these factors interact calls on healthcare professionals to explore an individual's belief system to ensure that the information communicated is meaningful and to enable the healthcare professional to avoid stereotypes and recognise the different cultural and religious reference points of family members.

The final sample of the narrative review consisted of 57 articles from the search and 44 articles identified from references of relevant articles; details of each study are summarised in the appendix. The literature has disproportionately focused on the experience of families and children with cancer in high-income countries (HICs) and HIV in LMICs. In general, studies exploring children's views consistently report the importance of honest discussions about illness, prognosis, and death. The results of the review are presented in relation to 3 research questions:

1. What is the effect of communication on emotional, behavioural, and social outcomes? And what is the effect of the communication on their parents or caregivers and the wider family system? - Studies have identified benefits of communication for children and adolescents across a range of outcomes, although this is not universal. With regard to treatment adherence, disease transmission, and progression: Communication between the child, their parents or caregivers, and healthcare professionals helps to gain the trust of the child and is associated with enhanced adherence through improved understanding of illness and the importance of treatment. The relationship between communication and outcomes for parents or caregivers has also been explored.
2. What factors influence the process of communication, and what are the barriers and challenges to communication? - The literature explores child factors, parent or caregiver factors, and factors influencing healthcare professionals' communication. For example, parental communication is linked to parents' own understanding and emotional response to the diagnosis. Parents might struggle to anticipate or react to worries their child might have. Furthermore, healthcare professionals and parents might have very different views about how much information should be shared with the child, often originating from the parents' desire to "protect their child".
3. What are the reported preferences of children, adolescents, and parents or caregivers on the way diagnostic information is conveyed? - Panel 3 on pages 1157-1158 provides a summary of these preferences from the research. Researchers stress that it is important to respect young people's wishes regarding what information they do and do not want, and to take account of their developmental capacities while upholding the principles of the United Nations (UN) Convention on the Rights of the Child.

An expert group of clinicians and researchers with experience of working with children and families affected by life-threatening conditions in HICs and LMICs met for a 2-day workshop in Oxford, United Kingdom (UK), in 2017. The group used the outcome of the literature review and previously published recommendations and integrated these with their academic and clinical perspectives. This iterative process resulted in a framework of principles to facilitate healthcare professionals in communicating with families. See the table on pages 1159-1160, which also includes suggested phrases. These are guiding principles only; practitioners are advised to be aware of the circumstances - e.g., in an acute situation, the child and parent or caregiver might be unable to assimilate large quantities of information. Key messages must be prioritised, repeated, and checked for understanding.

There are gaps in the literature that the researchers feel need to be addressed. For instance, openness is a consistently recurring theme within the literature, but the concept is usually poorly defined or quantified. Moreover, the informational or emotional content and developmental appropriateness of the communication is rarely specified or evaluated. This omission should be addressed in future research, which should consider how to sensitively involve children and parents or caregivers in studies closer to the moment of diagnosis.

Furthermore, communication skills are a key component of training curricula for healthcare professionals, but the effect of such training on clinical practice has rarely been evaluated. The researchers contend that extensive communication skills training and ongoing support programmes are required in both LMICs and HICs.

In conclusion: "Communicating the diagnosis of a life-threatening condition to a child is not a single event and evolves over time and illness trajectory, including supportive discussions about management and prognosis....Effective communication requires an understanding of how the parent or caregiver and child perceive the situation, the transfer of information, and also emotional support for parents, caregivers, and families. Providing emotional support to families is time-consuming and undoubtedly has an effect on health-care professionals; support to process the personal effect of this work is crucial to ensure that health-care professionals are able to cope with the emotional demands of this work."