Table 4

Changes to communication framework when a caregiver has a life-threatening condition

Change	Rationale for change
All instances of parent(s) changed to caregiver(s)	Caregiver is a more recognised term
Prepare information: Establish who else in patient’s family they want or do not want present for example, some male patients will not want female relatives present Identify who is the decision-maker within the family network; can they join the consultation Establish family’s preferred language for the consultation and arrange a translator if needed. Prepare the translator regarding the rationale for the conversation and the implications for their role in translating Identify relevant multidisciplinary team for ongoing management Establish if you need to engage with other HCPs or teams who may have helpful packages	Important to acknowledge cultural norms about gender roles and responsibilities. Important to acknowledge potential hierarchy within family and who has autonomy to make decisions about treatment. Decision-maker may not be at the appointment. Patients may have children living in different households. English is common language of HCPs, but multiple local languages and dialects spoken. Costs for family if a translator is needed. Potential impact on what information is disclosed if a family member acts as translator. Translator may worry about translating upsetting information; may modify messages to make them more acceptable, but incorrect Much variation in ongoing care pathways, provision and geographical location of specialist services
Prepare environment: Setting a time and date in advance may facilitate the family bringing the most appropriate people to the meeting, including translators or decision-makers	Decision-makers play a key role in information communicated within families and treatment plans. Distances travelled to clinic may be long; families may need time to make plans
New Section: exploring spiritual, religious and cultural beliefs:
Familiarise yourself with patient’s community’s beliefs regarding illness and/or death. Establish the family’s beliefs about illness and death Caregiver(s) may be using alternative explanations (witchcraft) to explain the illness Give permission to open a discussion about the use of traditional medicine or healers	Traditional medicine is widely available and considered as an important treatment in some communities. Acknowledging alternative perspectives and beliefs about illness causality and treatment can help facilitate the clinician–patient relationship and negotiation of what information about the illness is communicated to children in the family
Explore caregiver’s views about talking to their children:
Establish barriers and caregiver’s fears about talking to children May be helpful to share the experiences of other caregivers who have faced similar dilemmas about talking to their children Concerns of patient who has property and wealth Consider how patient may contact children from different households who might be able to practically help ill patient Cultural differences may make it difficult to understand the family’s reaction; potential to use translator’s knowledge to interpret the family’s non-verbal reaction	Stigma about illness may be an additional concern for caregivers about sharing diagnosis with children Patients may have children living in different households with cultural expectations about how property or wealth divided if they died Practical support could be available from other members of family Different cultural groups may have particular ways of expressing or avoiding showing their emotional reaction to news
Choice of words (changed from language): Consider use of drawings Encourage caregivers to use clear language and avoid euphemisms or technical jargon or words that could be misinterpreted. Explain symptoms using basic medical words and clear, concrete concepts that are condition specific in order to prevent/dispel causality being attributed to the supernatural or magic Encourage caregivers to prepare children who are at boarding school for changes in appearance of caregiver in advance	High levels of caregiver and child illiteracy. Challenge of identifying written resources in appropriate language or access to written resources due to illiteracy. Euphemisms risk misinterpretation but some cultural groups have euphemistic words that are both clear and, crucially, respectful when talking about illness and death Another opportunity to explore cultural, spiritual or religious beliefs that may conflict with medical explanation of illness Many children may attend school at distance from family home, with relatively infrequent visits
Reassurance for caregivers that discussion will not cause more problems
Explain that clearly telling a child what the illness is may prevent the child from unnecessarily blaming the caregiver for example, HIV, or wrongly attributing the illness to witchcraft or magical thinking If necessary, explain benefits for children in preparing them for caregiver’s death	Improving child’s understanding of illness can reduce stigma and/or self-blame. May be short time period between consultation and death; limited opportunities for future discussions to update children’s knowledge regarding illness progression
Preparing caregivers for common questions: Alert caregivers that children may show their worries through prayer or drawing Encourage caregivers to observe child’s play and then explore the themes that emerge Sharing the diagnosis with family members may bring up issues of succession	Family social hierarchies mean that children may not routinely feel able to ask adults questions Succession potential obstacle for caregivers in deciding whether to disclose a diagnosis
Future thinking: Explore the importance of children’s teachers and school. Support from their religious community may also be needed. Identify who is a trusted source of information for the patient and their family; may be helpful to involve this person(s) from their community Consider encouraging the patient to start writing a will and planning for the child’s future school fees. Could talk with the child about their future plans and identify a suitable mentor together For very young children, encourage the caregiver to put together a memory book	Caregivers may not consider that teachers could have an additional role as an emotional support for children. Religious faith is central to many communities. Limited opportunities for professional prebereavement support for caregivers and children Financial planning and succession arrangements are complex when dependent children may live in multiple households. School fees are a significant financial commitment for many families. Limited opportunities for professional pre-bereavement support