Communication with Children and Adolescents about the Diagnosis of a Life-Threatening Condition in Their Parent

It can be difficult for healthcare professionals treating adults with a life-threatening condition to raise the issue of children's understanding of parental illness and the importance of communicating with them about the illness. 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. This Lancet review - one in a series (see Related Summaries, below) - 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.

The final sample of the review consisted of 43 articles from the search and an additional 34 articles identified from references of relevant articles. In brief, among the topics explored are:

• Why communicating with children about parental life-threatening conditions matters - The literature identifies several compelling reasons to encourage parents, supported by healthcare professionals, to discuss their illness openly with their children. Research consistently highlights the need for communication with children in a timely manner and the potential negative consequences when information is absent. When children are not given information about their parent's illness, they attempt to make sense of the situation on their own. In a Ugandan study, adolescents (13-19 years) who were not told that their parent had died of HIV or AIDS attributed the death to either a treatable condition or a spiritual cause. This absence of information might lead to children worrying that they have caused the illness, for instance.
• Effect of communication on children's and adolescents' emotional, behavioural, and health outcomes - Many studies indicate the benefits of communication for children, such as reduced anxiety. Although there are many studies supporting the value of talking with children about a parent's life-threatening condition, this value is not universal. Intervention programmes for families experiencing parental life-threatening conditions have sought to facilitate communication between parents and children. Evaluation of these programmes provides some evidence of their benefit, although identifying the specific elements responsible for positive outcomes is difficult. For example, in a rural South African population with high levels of HIV, a randomised controlled trial (RCT) tested whether an intervention (Amagugu), consisting of 6 home-based counselling sessions delivered by lay counsellors, increased HIV disclosure by mothers who were HIV-positive to their children (n=464; 6-10 years) who were HIV-negative. During the sessions, the mother and counsellor identified other people with whom the child could discuss HIV. Materials provided to the mother included a Body Map to explain HIV in an age appropriate, non-stigmatising manner. The control group received an enhanced standard of care, which included one clinic-based counselling session to promote disclosure. The intervention group was found to have higher rates of maternal HIV disclosure, as well as improvements in healthcare engagement, care-planning for the child, and the mother-child relationship than did the control group. There were no differences between the groups for maternal and child mental health outcomes. However, subsequent analysis showed that where disclosure was undertaken, irrespective of group, it was associated with improvements in maternal and child mental health.
• Effect of communication on parents and the wider family system - Studies have found that sharing information can encourage trust between children and parents. Some studies indicate potential psychological and physical health benefits for parents following interventions to enhance communication with their children around illness.
• Factors that influence the process of communication - For example, studies have noted the consequences and difficulties that parents have experienced by not disclosing their HIV status; parents were concerned they would accidentally disclose their status in a moment of stress or high emotion. These situations deny the parent time to prepare or to make the communication process as supportive as possible.
• Barriers and challenges to communication - Parents often do not know how to tell their children about their illnessand want support, ideally from a healthcare professional. Studies both in high-income countries (HICs) and low- to middle-income countries (LMICs) highlight parents' fear of causing their child distress or creating anxiety or an unnecessary psychological burden. The success of this communication style might be limited if parents do not first check their child's understanding (which might be greater than suspected by parents) or elicit their child's concerns. Although parents often adopted a model of communicating facts rather than emotions, parents have been found to want their children to share more of their feelings. Children have reported that their parents were similarly uncommunicative about their own emotions. Children's difficulties in communicating about life-threatening conditions mirror themes expressed by parents, with children reporting that communication is often impeded by fears of upsetting their parents and a desire to protect their parents by avoiding talking about illness. Often, the healthcare professional responsible will have received no, or limited training in helping with communicating about illness. There are also cultural differences in preparing for death; in some communities around the world talking about death or dying is considered taboo.
• Reported preferences about how diagnosis and information is conveyed - An expert group of clinicians and researchers with experience of working with families affected by life-threatening conditions in HICs and LMICs met for a 2-day workshop in Oxford, United Kingdom (UK), in 2017. Their discussion of the research literature resulted in a summary of the themes that are important to children, adolescents, and their parents in the content and delivery of communication. See the panel on pages 1171-1173, which includes suggested phrases for parents and/or children. The experts stress that different cultures and what is appropriate to discuss with children must be considered, while upholding the principles of the United Nations (UN) Convention on the Rights of the Child.

As reported here, the literature is complicated by methodological difficulties. For example, only 3 studies done in LMICs directly involved children as research participants (in contrast to HICs); future research should strive to sensitively include children as active participants.

Furthermore, "A programme of formal communication skills training is crucial, both in medical schools and other health-care curricula, and part of continuing professional development for front-line health-care professionals. Evaluation of training and how this translates into enhanced clinical practice is essential....Building an infrastructure to provide support around family communication requires recognition of the training, time, and financial commitment involved."

The researchers conclude that the literature has focused on communication and the relationship between family members and hospital-based healthcare professionals, at the expense of considering the roles and responsibilities of professionals in the wider healthcare and community system (e.g., family or general practitioners, spiritual leaders, and school staff). "It is essential that there is a discussion among all healthcare professionals involved to decide who will take lead responsibility for addressing the children's communication needs."