Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life.

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.

Trusting relationships between patients with non-curative cancer and healthcare professionals create ethical obstacles for informed consent in clinical trials: a grounded theory study.

BACKGROUND: Clinical trial participation for patients with non-curative cancer is unlikely to present personal clinical benefit, which raises the bar for informed consent. Previous work demonstrates that decisions by patients in this setting are made within a 'trusting relationship' with healthcare professionals. The current study aimed to further illuminate the nuances of this relationship from both the patients' and healthcare professionals' perspectives. METHODS: Face-to-face interviews using a grounded theory approach were conducted at a regional Cancer Centre in the United Kingdom. Interviews were performed with 34 participants (patients with non-curative cancer, number (n) = 16; healthcare professionals involved in the consent process, n = 18). Data analysis was performed after each interview using open, selective, and theoretical coding. RESULTS: The 'Trusting relationship' with healthcare professionals underpinned patient motivation to participate, with many patients 'feeling lucky' and articulating an unrealistic hope that a clinical trial could provide a cure. Patients adopted the attitude of 'What the doctor thinks is best' and placed significant trust in healthcare professionals, focusing on mainly positive aspects of the information provided. Healthcare professionals recognised that trial information was not received neutrally by patients, with some expressing concerns that patients would consent to 'please' them. This raises the question: Within the trusting relationship between patients and healthcare professionals, 'Is it possible to provide balanced information?'. The theoretical model identified in this study is central to understanding how the trusting professional-patient relationship influences the decision-making process. CONCLUSION: The significant trust placed on healthcare professionals by patients presented an obstacle to delivering balanced trial information, with patients sometimes participating to please the 'experts'. In this high-stakes scenario, it may be pertinent to consider strategies, such as separation of the clinician-researcher roles and enabling patients to articulate their care priorities and preferences within the informed consent process. Further research is needed to expand on these ethical conundrums and ensure patient choice and autonomy in trial participation are prioritised, particularly when the patient's life is limited.

A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer.

OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals when delivering end of life supportive care for parents dying with cancer who have dependent children. DATA SOURCES: A mixed-methods systematic review was undertaken. Six electronic database were searched from their inception until September 2023 (Medline OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC), supplemented by citation chaining, grey literature searches using Google Advanced Search and relevant professional bodies. Quality assessment was conducted independently by two researchers on the included studies. A convergent integrated approach was utilised for data synthesis. CONCLUSION: The review identified two educational interventions; highlighting a dearth of training opportunities to equip health and social care professionals to provide supportive care to families when a parent is at end of life with cancer. Despite health and social care professionals reported need and desire for upskilling in this area of clinical practice, there is a severe lack of evidence-based educational interventions. It is imperative that effective educational interventions are made accessible to professionals. IMPLICATIONS FOR NURSING PRACTICE: There is an imminent need for robust educational interventions to be developed, as health and social care professionals often lack the knowledge, skills and confidence on how best to support families when a parent of dependent children is at end of life. Health and social care professionals engagement with high-quality, evidence-based and theory-driven educational interventions has the potential to impact professionals' provision of family-centred cancer care at end of life. This could lead to better mental and physical outcomes for the whole family at end of life and in bereavement.

Experiences of cancer patients in receiving dietary advice from healthcare professionals and of healthcare professionals in providing this advice-a systematic review.

PURPOSE: This systematic review investigated qualitative and quantitative studies exploring patients and healthcare professionals' (HCP) experience of nutrition care throughout the cancer journey. METHODS: Five databases were systematically searched for studies reporting on patient and healthcare professionals' experience of nutrition advice. RESULTS: Fifteen studies including 374 patients and 471 healthcare professionals were included. Findings indicate that patients desire more specific nutrition advice supported by members of the multidisciplinary team and delivered in appropriate and understandable language. Healthcare professionals have highlighted a lack of time, funding, dietetic roles, and knowledge as barriers to integrating nutrition as a standard part of cancer care. Five themes were identified (current provision of nutrition advice, optimal provision of nutrition advice, tension between patient values and nutritional or HCP priorities, providing evidence-based nutrition care, and practical barriers to nutrition advice provision). CONCLUSIONS: Further work is essential to better understand and address identified barriers and improve the provision of nutrition advice to this population. IMPLICATIONS FOR CANCER SURVIVORS: Findings from this review will guide the delivery of nutrition advice for cancer survivors.

Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings.

OBJECTIVES: This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating' healthcare professionals' (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child's own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda. DESIGN: A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions. SETTING: Health and social care and third sector organisations in South Africa and Uganda. PARTICIPANTS: Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English. RESULTS: Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients' beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations. CONCLUSIONS: Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals' and communities' understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.

Obstacles and facilitators to communicating with children about their parents' mental illness: a qualitative study in a sub-district of Mpumalanga, South Africa.

BACKGROUND: Given that common mental disorders are one of the leading causes of disease burden worldwide, it is likely that many children are growing up with a parent or other adult within their family who has anxiety or depression. Parents with a mental illness may not consider it appropriate to discuss their illness with their child, and consequently an absence of communication may lead to stigmatization, shame, misunderstanding their parents' symptoms, and even blaming themselves. There is a scarcity of research exploring the experiences and perceptions of healthcare professionals about communication with children of parents with mental illness in low-resource and African contexts. METHODS: A qualitative study using semi-structured interviews with healthcare professionals (n = 15) was conducted within the Bushbuckridge sub-district of Mpumalanga Province, South Africa. Data were analysed using Thematic Analysis. RESULTS: Four themes were identified relating to the obstacles around communication with children. These included: (1) finding an appropriate language to describe mental illness, as well as the prevailing cultural explanations of mental illness (2) the stigma associated with mental illness (3) the perceived role of children in society and (4) mental health services and staff skills. Two themes that addressed facilitators of communication about parental mental illness were identified: (1) the potential to increase mental health awareness amongst the broader community through social media, the internet, and general psychoeducation (2) healthcare professionals' concerns for the wellbeing and future mental health of patients' children, as well as their hopes for increased mental health awareness amongst future generations. CONCLUSIONS: This study provides insight into healthcare professionals' attitudes and perceptions about talking to patients and families within their community about mental illness. The results provide recommendations about possible ways to promote sharing information about a parent's mental illness with children at an individual and community level. Future research should focus on the collaborative creation of culturally sensitive psychoeducational resources and evidence-based guidelines. This must be supported by systemic and organisational change in order for professionals to successfully facilitate conversations with patients who are parents, and their children.

Talking really does matter: Lay perspectives from older people on talking about suicide in later life.

Background: The cumulative body of research on suicidality in later life describes its unique and complex features in older people when compared with that in other population groups. Yet significant gaps exist in how research informs the further development of suitable interventions. The perspectives of older people are also limited in research findings. Aims: Therefore, this exploratory study aimed to (1) identify potential barriers and enablers in discussing suicidal thoughts and their expression in later life from the perspectives of lay older people and (2) explore where opportunities might occur in approach, place, relationships, and language with older people to discuss suicidal thoughts and their expression. Method: We conducted in-depth qualitative individual interviews with 15 people aged 70-89 years. This method helped explore older peoples' own lay perspectives on suicidal thoughts in later life and how these are expressed, and their understanding of where and how people might seek support. Results: A total of three themes were generated from the dataset: (1) intergenerational and socio-cultural differences in suicide expression, (2) the normalization of suicidal thoughts in later life, and (3) the importance and difficulties of everyday discussion and opportunities to express suicidal thoughts. Conclusion: Suicidal thoughts and their expression appear commonly and are normalized in later life yet remain taboo and hidden. The participants revealed how such thoughts and behaviors are typically expressed through colloquial or "off-hand" remarks and comments and the importance of authentic listening. The findings highlight the importance of more informal discussions around these topics and how care professionals, practitioners, and providers might frame opportunities for dialogue with people who may want to access support. Further engagement with community-informed participatory research methods in which older people provide their own perspectives and experiences is important in addressing these gaps. There is a need for co-designing in developing screening, assessment, and signposting outside of clinical settings that can be used in everyday caring relationships with people in later life.

Exploring healthcare professionals' beliefs, experiences and opinions of family-centred conversations when a parent has a serious illness: A qualitative study.

This study explored healthcare professionals' perceived role in talking to adult patients about sharing their diagnosis with children. Semi-structured interviews were conducted to explore healthcare professionals' beliefs about how families could and should be supported when a parent has a serious illness. Participants were 24 healthcare professionals working in primary, secondary and tertiary NHS services in the UK with adult patients diagnosed with a serious illness. Data were analysed thematically. Many healthcare professionals reported systems to identify patients' family relationships, but this information was rarely used to initiate conversations on what and how to talk to children. It was frequently assumed that someone else in the healthcare system was supporting patients with family communication. Others reported there were more urgent priorities for the consultation or considered that talking to children was a private family matter. However, several professionals did undertake these conversations, viewing this as a central part of their role. Some healthcare professionals felt they had inadequate skills or confidence to raise talking to children with their patients and indicated a need for specific training to address this. The results highlight the importance of systematically documenting patients' relationships with children so that this information can be used to inform ongoing discussions with the healthcare team about what children have been told. Patients consistently report wanting support about how to talk to children and the benefits of effective communication are well documented. Dissemination of this evidence could encourage professionals across all specialities to include family-centred communication in routine patient care. Training resources are needed so that staff feel empowered and equipped to raise these sensitive subjects with their patients.

'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

'I didn't know what was in front of me'-Bereaved parents' experience of adapting to life when a co-parent of dependent children has died with cancer.

OBJECTIVE: It is not clear how the bereaved parent navigates life with the children after a co-parent has died. The objective of this study is to explore bereaved parents' experience of managing life when a co-parent of dependent children has died with cancer. METHODS: Twenty-one in-depth interviews were conducted with bereaved parents when a co-parent died with cancer. Data were analysed thematically. RESULTS: Bereaved parents highlighted how their children was their key focus after the death of a co-parent with cancer, as they effortfully strived to be a 'perfect parent'. While some bereaved parents struggled to adapt to the role as a sole parent, others described the importance of maximising social networks to help with the practical aspects of parenting. However, most bereaved parents described intense feelings of loneliness as they navigated parenting alone. To help navigate this post-bereavement period, parents considered it important for their children to openly talk about the deceased parent. Also, meeting others who have experienced similar situations was helpful for the bereaved parent and children, providing hope for the future. Results are discussed under two themes: (1) adapting to life without the parent, and (2) a desire to keep the memory alive of the parent that died with cancer. CONCLUSIONS: Bereaved parents should be encouraged to practice self-care when a co-parent has died from cancer so they can appropriately meet the needs of their children. Bereaved parents should be reassured that showing emotion in front of the children is helpful and could facilitate better grief experiences for the whole family.

Challenges and opportunities for perinatal health services in the COVID-19 pandemic: a qualitative study with perinatal healthcare professionals.

BACKGROUND: Perinatal healthcare professionals (PHCPs) provide essential support to all parents in the perinatal period, including young parents aged 16-24, who are at an increased risk of morbidity and mortality. Little is known about the impact of COVID-19 restrictions on the provision of perinatal services, and on perinatal healthcare professionals, caring for young parents in the UK. METHODS: A UK based qualitative study using semi-structured interviews with perinatal healthcare professionals (n = 17). Data were analysed using thematic analysis. RESULTS: Two themes were identified describing perinatal healthcare professionals' perceptions of providing care to young parents during the pandemic. Perinatal healthcare professionals perceived that young parents' needs were amplified by the pandemic and that pandemic-related changes to the service, such as the use of telemedicine to replace face-to-face interactions, did not manage to successfully mitigate the increased feelings of anxiety and isolation experienced by young parents. Concerns were raised by perinatal healthcare professionals that these changes reduced young parent's access to vital support for themselves and their child and may contribute to exacerbating pre-existing inequalities. CONCLUSIONS: This study provides insight into the impact of the COVID-19 pandemic on the provision of perinatal care to young parents. Perinatal mental health professionals felt these negative impacts could be overcome by using a blended approach of technology and face-to-face interactions allowing regular contact with young parents and facilitating the exchange of vital information, while maintaining access to opportunities for social interactions with other parents. Findings from this study could be used to future-proof services against further COVID-19 restrictions.

Young parents' experiences of pregnancy and parenting during the COVID-19 pandemic: a qualitative study in the United Kingdom.

Young parents (aged 16-24 years) in the perinatal period are at an increased risk of poor mental health especially during the COVID-19 pandemic, due to multiple risk factors including social and economic instability. COVID-19 related restrictions had profound implications for the delivery of perinatal care services and other support structures for young parents. Investigating young parents' experiences during the pandemic, including their perceived challenges and needs, is important to inform good practice and provide appropriate support for young parents.Qualitative interviews were conducted with young parents (n = 21) during the COVID-19 pandemic in the United Kingdom from February - May 2021. Data were analysed using thematic analysis.Three key themes were identified to describe parents' experiences during the COVID-19 pandemic. Parents reported specific COVID-19 related anxieties and stressors, including worries around contracting the virus and increased feelings of distress due to uncertainty created by the implications of the pandemic. Parents described feeling alone both at home and during antenatal appointments and highlighted the absence of social support as a major area of concern. Parents also felt their perinatal care had been disrupted by the pandemic and experienced difficulties accessing care online or over the phone.This study highlights the potential impact of the COVID-19 pandemic on young parents, including their mental wellbeing and the perinatal support they were able to access. Insights from this study can inform the support and services offered to families going forward. Specifically, the findings emphasise the importance of (a) supporting both parents during perinatal appointments, (b) providing parents with mental health support early on and (c) finding ways to facilitate communication pathways between professionals and parents.

An Economic Evaluation Supported by Qualitative Data About the Patient Concerns Inventory (PCI) versus Standard Treatment Pathway in the Management of Patients with Head and Neck Cancer.

BACKGROUND: The head and neck cancer (HNC) Patient Concerns Inventory (PCI) is a condition-specific prompt list that allows patients to raise concerns to cancer consultants that otherwise might be overlooked. OBJECTIVE: This is the first economic evaluation of the PCI in patients with HNC investigating the costs and effects to the health service of not prioritising certain treatment pathways in addition to the primary cancer pathway. Additional costs can be accrued due to delayed referral to other appropriate services, e.g. hospital dentist. Economic evidence could influence future policy direction in this area globally. METHODS: Alongside a 3-year clustered randomised controlled trial, an economic evaluation was undertaken with Client Service Receipt Inventory data collected at three different time points (baseline and 6 and 12 months post-baseline). Patients were identified by a multidisciplinary team at the trial clinics. This economic analysis compared the PCI intervention versus the non-PCI treatment pathway. A deterministic and probabilistic sensitivity analysis was conducted to investigate the cost per quality-adjusted life-year (QALY) gain of the PCI versus non-PCI intervention treatment pathways. Qualitative data were also collected from seven consultants to triangulate findings from the economic evaluation. RESULTS: The analysis used data from 191 patients (66% of the full trial sample). The PCI inventory was low cost, at just over £13 per participant. The PCI intervention was cost effective and also cost saving, with an incremental cost difference of £295.91 over the 12-month follow-up period. The QALY values were higher in the PCI intervention strategy, with a value of 0.79, whereas the non-PCI group had a value of 0.76, thus the PCI intervention was dominant. The sensitivity analysis showed that, at a willingness-to-pay threshold of £20,000 per QALY gained, the probability of being cost effective was 0.85 (95% confidence interval [CI] 0.80-0.83). Qualitative results showed that consultants using the PCI reported an enhanced awareness of patients' overall post-treatment needs. DISCUSSION: The PCI provided an effective means to conduct clinical consultations by avoiding unnecessary healthcare costs and focussing on aspects of care most important to patients. The cost per QALY gain was within the National Institute for Health and Care Excellence guideline threshold. The economic evaluation showed that the PCI intervention strategy was dominant and therefore cost saving to the national health service (NHS) and was more effective in terms of treatment. CONCLUSION: The PCI appears to be a low-cost intervention that generates a cost-effective benefit to patients from a NHS perspective if rolled out as part of routine care. Qualitative evidence has shown that the use of the PCI is supported by consultants in routine practice. TRIAL REGISTRATION: Clinical Trials Identifier: NCT03086629.

Parent's with incurable cancer: 'Nuts and bolts' of how professionals can support parents to communicate with their dependent children.

OBJECTIVE: Parents with incurable cancer are often uncertain how, what and when is best to tell their children about their poor prognosis and prepare them for the actual death. Despite parents' desire and need for support from health and social care professionals (HSCPs), this is often lacking. HSCPs feel ill-equipped, identifying a need for an evidence-based communication framework for professionals to use in practice, promoting parent-child communication at end of life. METHODS: A systematic process, involving a systematic review and data from 76 semi-structured, face-to-face qualitative interviews from three participant populations, including HSCPs (n = 32), bereaved parents (n = 21) and funeral directors (n = 23) were triangulated. This informed the development of the 'Talking, Telling and Sharing': End of life framework (6 W Grid), guided by an expert group. RESULTS: An evidence-based, theory-driven communication framework has been developed. This provides a mechanism for HSCPs to proactively and directly engage with patients, addressing their parent-child communication concerns. CONCLUSION: Clear, evidence-based communication frameworks can enhance patient-provider communication in practice, particularly around sensitive and complex issue. PRACTICE IMPLICATIONS: There is a need for HSCPs to encourage parents to start these difficult conversations soon after receiving the poor prognosis, to avoid crisis management when the ill-parent is actively dying or throughout the immediate bereavement period.

Conversations About Children When an Important Adult Is at End of Life: An Audit.

PURPOSE: Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals' perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice. METHODS: An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress. RESULTS: Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option. CONCLUSIONS: Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.

Immediate bereavement experiences when a parent of dependent children has died of cancer: Funeral directors' perspectives.

When a parent of dependent children dies, families are often unsure if and how children could be part of the immediate bereavement period. Children excluded can be more susceptive to negative outcomes. In-depth interviews explored funeral directors' (N = 23) experiences of providing a service to families in the immediate bereavement period, when a parent dies from cancer. Findings highlighted funeral directors can have an important role in guiding families through the distressing immediate bereavement period. Recommendations are discussed surrounding a pastoral role of the funeral director in the immediate bereavement period.

Experiences of preparing children for a death of an important adult during the COVID-19 pandemic: a mixed methods study.

OBJECTIVE: The objectives of this study were to investigate how families prepared children for the death of a significant adult, and how health and social care professionals provided psychosocial support to families about a relative's death during the COVID-19 pandemic. DESIGN/SETTING: A mixed methods design; an observational survey with health and social care professionals and relatives bereaved during the COVID-19 pandemic in the UK, and in-depth interviews with bereaved relatives and professionals were conducted. Data were analysed thematically. PARTICIPANTS: A total of 623 participants completed the survey and interviews were conducted with 19 bereaved relatives and 16 professionals. RESULTS: Many children were not prepared for a death of an important adult during the pandemic. Obstacles to preparing children included families' lack of understanding about their relative's declining health; parental belief that not telling children was protecting them from becoming upset; and parents' uncertainty about how best to prepare their children for the death. Only 10.2% (n=11) of relatives reported professionals asked them about their deceased relative's relationships with children. This contrasts with 68.5% (n=72) of professionals who reported that the healthcare team asked about patient's relationships with children. Professionals did not provide families with psychosocial support to facilitate preparation, and resources were less available or inappropriate for families during the pandemic. Three themes were identified: (1) obstacles to telling children a significant adult is going to die, (2) professionals' role in helping families to prepare children for the death of a significant adult during the pandemic, and (3) how families prepare children for the death of a significant adult. CONCLUSIONS: Professionals need to: provide clear and honest communication about a poor prognosis; start a conversation with families about the dying patient's significant relationships with children; and reassure families that telling children someone close to them is dying is beneficial for their longer term psychological adjustment.

'Don't forget the children': a qualitative study when a parent is at end of life from cancer.

PURPOSE: Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. METHODS: This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. RESULTS: Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. CONCLUSIONS: Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is 'well enough' to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.