Title: Using the Person-Based Approach to Develop a Resource for Healthcare Professionals to Facilitate Family-Centred Conversations when an Adult Patient has a Serious Illness
Funder: Department of Health and Social Care

Abstract: Background: Everyday thousands of adults across the UK are diagnosed with serious health conditions. Many will have important relationships with children, as parents, caregivers or grandparents, and face the unenviable task of sharing their diagnosis with children. Communicating effectively with children about parental illness is associated with better psychological outcomes for children and the family.1 Conversely, when these important conversations are absent, children report increased symptoms of anxiety, depression and behavioural difficulties. Family-centred conversations is a key component in protecting their long-term psychological health.2 Adult patients want help from healthcare professionals (HCPs) to think about what, how and when to share their diagnosis with children. HCPs describe feeling uncertain and unskilled in asking patients about their relationships with children, fearing that they will make the situation worse.3,4 Consequently, support for patients is often absent.4,5 Aims: To improve HCPs' knowledge, skills and confidence about initiating family-centred conversations when an adult patient has a serious illness. Methods: A resource for HCPs will be created, underpinned by the Person-based approach 6 which draws on and integrates views of key stakeholders and PPI in a collaborative and iterative fashion at all stages. Phase 1 Planning: Focus group discussion with Advisory Panel of HCPs (n=8) who have responsibility for professional training at a national level. Data will be inductively analysed using thematic analysis. Findings will inform resource design and delivery. Phase 2A Resource Development: Workshops to identify resource content with 1) adults with lived childhood experience of parental serious illness (n=6-8); 2) patients with lived-experience of a range of serious health conditions (or their partners) with dependent children (n=6-8); 3) general and specialist HCPs from a range of clinical disciplines (n=6-8). Data from workshops 1 and 2 will be analysed thematically and resulting guiding principles presented to workshop 3. Resource content will be created and presented to Advisory Panel from phase 1 for critical discussion. Phase 2B Resource Testing: Think-aloud individual interviews to iteratively test and modify the resource with i) HCPs (n=6-8); ii) patients and partners with lived-experience of serious illness (n=6-8); iii) young people (n=5) with lived-experience of an adult s illness. After every 4/5 interviews, data will be critically discussed with co-applicants to modify the resource. This process of iterative development and testing (anticipated 3 rounds) will be used to reach the final version of the resource. Phase 3 Formative Evaluation: Online survey of HCPs pre-and-post accessing the resource (n=200), including Likert-style questions measuring HCPs' knowledge, perceptions and attitudes and self-rated clinical communication skills. Analysed using paired sample t-tests to explore differences in HCPs' perceived self-efficacy. After three months, one-off semi-structured interviews with consenting HCPs (n=30), analysed using reflexive thematic analysis. Anticipated Impact and Dissemination: Resource will be disseminated via publications in journals, blogs, podcasts, Advisory Panel, applicants and collaborators professional and personal networks, University websites and social media. The project will promote HCPs confidence in helping their adult patients talk to children. Facilitating family-centred conversations will improve the short- and long-term mental health of children and families affected by serious illness.

Lay abstract: Everyday thousands of adults are diagnosed with serious health conditions such as cancer, heart disease, diabetes or COVID-19. Many of these adults have important relationships with children, such as parents, caregivers or grandparents, and so will face the unenviable task of sharing this information with children. Adults understandably want to protect children from the distress of serious illness, yet research shows that when children are not told about what is happening, they reach their own conclusions. For example, children may feel they are to blame for changes they have noticed in a parent s behaviour, or when a grandparent stops visiting. Studies show children want and need age-appropriate and honest information about the illness; this allows them to make sense of what they are seeing and be emotionally supported by their family network. Effective communication with children about serious illness has benefits both for children s mental health, but also trust and relationships within the family. Adult patients want help from their healthcare team to think about what, how and when to share their diagnosis with children, or how to answer questions such as &ldquo;Are you going to die?&rdquo;. This support is often missing, as healthcare professionals (HCPs) rarely meet patient s children at appointments and these important connections may be invisible to the healthcare system. Furthermore, HCPs describe feeling uncertain and unskilled in asking patients about their relationships with children, fearing that they will make the situation worse or upset their patients. Consequently, these topics are often completely avoided during medical appointments. This project will explore how best to equip HCPs with the skills and confidence to support their patients talk about these sensitive topics with the children they love. We will ask groups of HCPs and people with experience of serious illnesses about the key messages they think should be included and how they need to be presented. We will listen carefully to the voices of different communities to make sure different beliefs and cultures are included. We will then work in partnership with all of these different groups to develop the resource. We will ask 200 HCPs for feedback about the resource by answering some questions online. Three months later we will interview 30 HCPs to find out their thoughts about the resource and how it may have shaped their conversations with patients. These methods will help ensure the resource is useful for HCPs to provide families with the support they want and need. HCPs have a critical role in helping their patients understand why talking to children matters. By promoting family centred conversations, the project will improve the short- and long-term mental health of children and families affected by serious illness.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE