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Background: Malignant pleural mesothelioma (MPM) is a rare and usually fatal malignancy frequently linked to occupational asbestos exposures and associated with poor prognosis and considerable humanistic burden. The study aimed to develop conceptual models of the health-related quality of life (HRQoL) impact on patients with and receiving treatment for MPM, and the burden on their caregivers., Methods: This multi-country study (Australia and United Kingdom) adopted a qualitative methodology to conduct semi-structured, independent interviews with people with MPM (n = 26), current caregivers (n = 20), and caregivers of people who had recently died because of MPM (n = 4). Participants were recruited using a purposive sampling approach and interviews conducted via telephone between January 2021 and January 2022. Transcripts were analysed using thematic analysis and used to construct conceptual models., Results: Patient analysis yielded four overarching themes: (1) debilitating burden of breathlessness and fatigue; (2) physical mesothelioma symptoms experienced by patients; (3) distress of MPM on the self and family; and (4) treatment is worth 'having a go' despite the potential impact on symptoms. Caregiver analysis yielded five core themes: (1) daily life limited by caregiving duties; (2) emotional well-being and the need for support; (3) the relational role shift to caregiver; (4) time spent providing care negatively impacts work and productivity; and (5) positive aspects and outcomes of caregiving., Conclusions: This study highlights the substantial daily and emotional HRQoL impact that MPM symptoms have on patients and caregivers. Both groups reduced work, productivity, and social and leisure activities. There was evidence of positive HRQoL impacts as a result of immunotherapy and radiotherapy, but less for chemotherapy. Caregiver impacts were intensified during the end-of-life period and persisted following patient death. Evident is a need for increased psychological support, information, and advice for caregivers, increased during the end-of-life period., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Objective: Chronic kidney disease (CKD)-associated anaemia has substantial biopsychosocial impacts. This study explores the impact of CKD-associated anaemia and treatment preferences from the patient perspective., Design: Cross-sectional survey., Setting: Anonymised online survey implemented by Ipsos UK on behalf of the National Kidney Federation and GSK from October 2022 to January 2023., Participants: Data were collected from UK adults living with CKD (self-reported)., Primary and Secondary Outcome Measures: Outcome measures were exploratory and not predefined. The cross-sectional survey was designed to explore the biopsychosocial impact of living with anaemia on individuals with CKD; their unmet needs; the treatment strategies typically implemented and the associated barriers/facilitators to adherence; the healthcare professional-patient relationship with regard to anaemia diagnosis and management., Results: Of 101 participants, 90 (89%) were patients with CKD and 11 (11%) were informal carers. 96 (95%) participants reported symptom(s) relevant to their experience of CKD. 88 (87%) participants reported symptom(s) associated with anaemia and 61 (64%) expressed an impact on daily life including 18 (19%) unable to perform daily activities, 13 (14%) unable to go to work and 9 (9%) reporting poor social life/interactions. 85 (84%) participants reported they have received treatment for anaemia: intravenous iron (n=55, 54%), iron tablets (n=29, 29%), erythropoietin-stimulating agents (ESAs) via an autoinjector (n=28, 28%), ESA injections via a syringe (n=24, 24%), ESA injections via a dialysis machine (n=17, 17%), folic acid (n=22, 22%) and blood transfusion (n=17, 17%). Six of seven (86%) participants who received their ESA from a healthcare professional at home preferred injections whereas 13/27 (48%) participants who injected themselves at home preferred oral tablets., Conclusions: There is not a 'one-size-fits-all' approach to the management of CKD-associated anaemia. A personalised approach incorporating the treatment preferences of the individual should be explored when discussing treatment options., Competing Interests: Competing interests: KLH and PR declare no conflicts of interest. JR is an employee of Ipsos and received honoraria for speaking as part of a GSK panel at UK Kidney Week 2023 congress and for an internal seminar delivered to Astellas. CC and MM are employees of and hold shares in GSK. JK was an employee of GSK at the time of the study and is currently an employee of Medice UK Ltd. SP is an employee of Ipsos. JOB received payment for participating in speaker’s bureaus for GSK and CSL Vifor., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life., Aim: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life., Design: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods., Method: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media., Results: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services., Conclusion: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Objectives: The Awareness, Care and Treatment In Obesity maNagement (ACTION) Teens study explored attitudes, behaviours, perceptions and barriers regarding effective obesity care among adolescents living with obesity (ALwO), caregivers and healthcare professionals (HCPs)., Design: Cross-sectional online survey study., Setting: Study across 10 countries; here, we report data from UK respondents., Participants: Overall, 416 ALwO (aged 12 to <18 years; body mass index ≥95th percentile for age and sex (WHO charts)), 498 caregivers and 250 HCPs in the UK completed the survey (August-December 2021)., Primary and Secondary Outcome Measures: Survey questions addressed key aspects of obesity management for ALwO., Results: Overall, 46% of ALwO perceived their weight as normal or below normal and 86% believed their health was at least good; 56% and 93% of caregivers responded similarly for their ALwO. Despite this, most ALwO (57%) had attempted to lose weight in the past year and 34% felt highly motivated to lose weight. YouTube and social media were most often used by ALwO for information about weight management (41% and 39%); few ALwO and caregivers sought information from a doctor (13% and 22%). Among ALwO who had discussed weight with an HCP (n=122), 49% trusted their weight-management advice. Only 10% of ALwO and 8% of caregivers were told by a doctor that they/their child had obesity. For HCPs, obesity-related comorbidities were the most common reason for initiating weight conversations with ALwO (73%), while short appointment times were the most common barrier (46%). Overall, 30% of ALwO and 11% of caregivers did not feel comfortable bringing up weight with an HCP., Conclusions: Improved education and communication are needed among ALwO, caregivers and HCPs in the UK to help improve awareness of obesity, its aetiology and its impact on health, and to support HCPs to proactively initiate weight-related conversations and build trust with ALwO and caregivers., Trial Registration Number: NCT05013359., Competing Interests: Competing interests: JCGH reports consultancy fees from Novo Nordisk for his role as a member of the ACTION Teens Steering Committee during the conduct of the study, consultancy fees from Boehringer Ingelheim and Dupont (paid to the University of Leeds), honoraria from Novo Nordisk (paid to the University of Leeds), support from Novo Nordisk for attending meetings and financial support from Dupont for participation in an advisory board (paid to the University of Leeds). ACB reports honoraria from Johnson and Johnson, Novo Nordisk, Obesity UK and the Office for Health Improvement and Disparities, outside the submitted work; he is also on the Medical Advisory Board of, and a shareholder of, Reset Health Clinics. KC reports speaker fees from Apollo Endosurgery and Ethicon, and participation in advisory boards for Boehringer Ingelheim and Eli Lilly; he is also the Chair of Trustees for the patient charity WLSinfo and for the European Coalition for People living with Obesity. LJE receives funding from the Medical Research Council and National Institute for Health and Care Research and is a member of the Office for Health Improvement and Disparities National Child Measurement Programme board and the NHS Complications from Excess Weight Clinics E-board. AG is a full-time employee of Novo Nordisk. DG reports honoraria, speaker fees and support for meeting attendance from Novo Nordisk. CH reports consultancy fees from Ethicon and Novo Nordisk. SS reports honoraria from Merck, Novo Nordisk, Pfizer and Sandoz., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data., Methods: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis., Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate., Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP., (© 2024 The Author(s). Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Professional quality of life (ProQOL) refers to workers' subjective feelings associated with work involved in helping others who have experienced trauma. It consists of positive and negative aspects, that is, subscales of compassion satisfaction, and burnout and secondary traumatic stress. Foster and kinship caring inherently involves risks associated with exposure to the trauma responses of children in their care. This exposure can lead to poor ProQOL, carer attrition, and placement instability. While limited studies specifically explore ProQOL of carers, many studies have examined factors and interventions related to ProQOL. However, there is a lack of synthesis of these studies. To fill such a research gap, we undertook a scoping review of 70 empirical studies from Australia, the United Kingdom, and the United States, published from 2012 to 2022 reporting on ProQOL, and its related factors and concepts. We applied a multilevel ecosocial construct to examine complex interrelationships between private and governance settings to better understand factors related to ProQOL of carers and interventions aimed to improve it in these dynamic systems. In our review, some studies showed positive outcomes for carers, such as reduced stress or burnout associated with training. However, there was insufficient attention to factors associated with ProQOL at relational and sociopolitical levels. It is crucial to improve carers' ProQOL or well-being to ensure their retention and placement stability. Long-term systemic improvements require interventions across different levels of the system., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer., Methods: Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of - and barriers to - using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education)., Results: Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes., Conclusions: Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face validity of the Attitude to Health Change Scales (patient and carer versions) from the perspective of specialist palliative care professionals. Design: A two-stage study: (i) focus groups to explore experiences of scale use and wording, (ii) online survey to gather preferences on possible scale modifications. Focus group data were analysed using framework analysis. A hermeneutic approach was used to modify the wording of the scales, ensuring adherence to the underpinning concepts used in the design of the scale, congruence with the palliative care context, and simplicity of language. Setting/Subjects: Specialist palliative care practitioners in UK hospice settings who had been involved in pilot use of the scales in clinical practice. Results: 21 practitioners participated in 3 focus groups across 3 UK hospice sites, 9 of those participants responded to the survey. Four themes are presented: the importance and distinctiveness of the scales; maintaining conceptual integrity; ensuring a palliative care focus; and ensuring linguistic clarity. New iterations of the patient and carer versions of the Attitude to Health Change scales were developed. Conclusion: The scales appear to reflect the intended theoretical constructs, and are worded in a way which is congruent with the experience of specialist palliative care practitioners., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Individuals living with transfusion-dependent β-thalassemia (TDT) experience reduced health-related quality of life due to fatigue and chronic pain, which cause disruptions to daily life. Currently, limited qualitative data exist that describe these impacts., Objective: This study aimed to examine the ways in which symptoms and current treatments of TDT impact health-related quality of life, to holistically describe the humanistic burden of TDT, and to identify the unmet needs of individuals living with TDT., Methods: Adults (aged ≥ 18 years) with TDT and caregivers of adolescents (aged 12‒17 years) with TDT participated in semi-structured one-on-one virtual interviews and focus group discussions. Interviews were conducted in the USA and UK and lasted approximately 60 minutes. After transcription, the interviews were analyzed thematically using a framework approach., Results: A total of ten interviews/focus group discussions (six interviews and four focus group discussions) were conducted with 14 adults with TDT and two caregivers of adolescents with TDT. A framework analysis revealed five themes describing health-related quality of life (negative impacts on daily activities, social life, family life, work and education, and psychological well-being) and three themes describing the lived experience of TDT (impact of red blood cell transfusions and iron chelation therapy, treatment, and stigma). Physical, psychological, and treatment-related factors contributed to negative impacts on daily activities, social and family life, and work and education. Concerns about reduced lifespan, relationships and family planning, and financial independence were detrimental to participants' mental well-being. Participants reported having high resilience to the many physical and psychological challenges of living with TDT. A lack of TDT-specific knowledge among healthcare professionals, particularly regarding chronic pain associated with the disease, left some participants feeling ignored or undermined. Additionally, many participants experienced stigma and were reluctant to disclose their disease to others., Conclusions: Individuals living with TDT experience substantial negative impacts on health-related quality of life that disrupt their daily lives, disruptions that are intensified by inadequate healthcare interactions, demanding treatment schedules, and stigma. Our study highlights the unmet needs of individuals living with TDT, especially for alternative treatments that reduce or eliminate the need for red blood cell transfusions and iron chelation therapy., (© 2024. The Author(s).)

Background: Family carers of people living with comorbid dementia and cancer (CDC) play a vital supportive role, but this may be particularly burdensome and adversely impact their own health and wellbeing., Objective: To examine the experiences and psychosocial support needs of caregivers of people with CDC., Methods: A flyer advertising the study was distributed to relevant UK voluntary sector organisations and shared across social media. 13 carers of people with CDC were recruited. In-depth semi-structured interviews were conducted and transcripts were analysed using reflexive thematic analysis, underpinned by an inductive phenomenological approach., Results: Complex interactions of dementia and cancer resulted in heightened responsibility for carers, who played a crucial role in recognition/management of symptoms, performing difficult cancer-related care, and treatment decision-making that posed difficult ethical challenges. Care-recipients had reduced insight into their cancer diagnosis and prognosis, so carers often carried the emotional burden alone. Responsibilities faced by carers were compounded by a lack of targeted, accessible information/support for CDC. Carers expressed a desire to talk to and learn from others who understand the unique challenges of navigating cancer-related decision-making, treatment and care for people who are also living with dementia., Conclusions: Cancer alongside dementia presents complex challenges for carers, who desire more cancer-related information and support which is tailored to people living with dementia and their family caregivers.

Background: People with severe mental illness (SMI) such as schizophrenia and bipolar disorder are at a substantially higher risk of premature death in that they die between 10 and 20 years earlier than the general population. Cardiovascular disease (CVD) and diabetes are the main potentially avoidable contributors to early death. Research that explores the experiences of people with SMI highlights their struggles in engaging with health professionals and accessing effective and timely interventions for physical health conditions. A consequence of such struggles to navigate and access physical healthcare results in many people with SMI relying heavily on support provided by informal carers (e.g., family members, close friends). Despite this, the experiences of informal carers, and the roles they undertake in relation to supporting the physical health and psychotropic medication use of people with SMI, remains under-researched., Aims: To explore the impacts of providing care for physical health in severe mental illness on informal carers., Method: Thematic analysis of semi-structured interviews with eight informal carers of people with SMI in United Kingdom (UK) national health services., Results: Informal carers played an active part in the management of the patient's conditions and shared their illness experience. Involvement of informal carers was both emotional and practical and informal carers' own lives were affected in ways that were sometimes deeply profound. Informal carers were involved in both 'looking after' the patient from the perspective of doing practical tasks such as collecting dispensed medication from a community pharmacy (caring for) and managing feelings and emotions (caring about)., Conclusions: Providing care for the physical health of someone with SMI can be understood as having two dimensions - 'caring for' and 'caring about'. The findings suggest a bidirectional relationship between these two dimensions, and both have a cost for the informal carer. With appropriate support informal carers could be more actively involved at all stages of care without increasing their burden. This should be with an awareness that carers may minimise the information they share about their own needs and impacts of their role to spare the person they care and themselves any distress., (© 2024. The Author(s).)

Purpose: Mesothelioma is an incurable, asbestos related cancer with a poor prognosis. Little is known about how patients and carers living with the condition manage their mental health and wellbeing needs. This paper reports findings on interventions being used by patients and informal carers living with mesothelioma and those which they find most helpful., Methods: In-depth interviews with patients (n = 10) and (informal) carers (n = 11) living with mesothelioma in the UK. We analysed our data inductively using a reflexive thematic analysis approach., Results: Participants described the importance of both smaller and larger actions and strategies which helped with their mental health. This included spending more time with family and friends and going on holidays. Professionals who participants said supported their mental health journey included not only specialist nurses and mental health professionals but also legal and Asbestos Support Group professionals. The latter demonstrates the unique needs and support required for this population. Exposure to asbestos as the cause of mesothelioma, has led to a social justice aspect of the experience of living with this cancer. Participants reported the importance of collective action to their mental health and wellbeing. The data indicate that patients and carers may have distinct mental health and wellbeing requirements and need to manage these in different ways at different times., Conclusions: Findings have implications for nurses and other key professionals working in healthcare, community and legal settings supporting this client group, and for those living with mesothelioma who want to understand ways to enhance their own wellbeing., Competing Interests: Declaration of competing interest No conflicts of interest to declare., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background and Objectives: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention., Research Design and Methods: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom., Results: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery., Discussion and Implications: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

COVID-19 has impacted disproportionately two groups in the UK: healthcare workers and people from ethnically minoritised groups. However, there is a lack of evidence on how COVID-19 affected ethnically minoritised carers in care homes. Therefore, the present study aimed to explore the available evidence regarding the impact of COVID-19 on ethnically minoritised carers in UK. The relevant records were systematically searched in Cochrane COVID-19 Study Register and WHO COVID-19 global literature. A total of 3164 records were retrieved. Following duplicate elimination and abstract, title, and full-text screening, 10 studies were identified as eligible for the present scoping review. Most of the studies were conducted in the UK and USA, involving diverse healthcare occupations and methodologies. Multiple studies found anxiety, depression, stress, and post-traumatic stress disorder among carers with high odds among ethnically minoritised carers. Limited access to personal protective equipment and workplace discrimination was noted and linked with poor mental health. The carers reported difficulties in care delivery and managing extra workload arising from staff shortages. The risk of infection and clinically significant mental disorders was higher among carers from the ethnically minoritised background. They exhibited fear about care homes' uncertain futures and consequential financial losses. Conclusively, COVID-19 appeared to exert adverse effects on practices and experiences of ethnically minoritised carers in the UK's care homes; however, further studies are warranted to increase the understanding of COVID-19-related experiences of this group of carers which significantly contribute to the country's healthcare system., (© 2023. The Author(s).)

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning., Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services., Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities., Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK., Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying., Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background and Objectives: Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved., Research Design and Methods: This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination., Results: Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities., Discussion and Implications: Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background: Informal carers play an important role in the everyday care of patients and the delivery of health care services. They aid patients in transportation to and from appointments, and they provide assistance during the appointments (eg, answering questions on the patient's behalf). Video consultations are often seen as a way of providing patients with easier access to care. However, few studies have considered how this affects the role of informal carers and how they are needed to make video consultations safe and feasible., Objective: This study aims to identify how informal carers, usually friends or family who provide unpaid assistance, support patients and clinicians during video consultations., Methods: We conducted an in-depth analysis of the communication in a sample of video consultations drawn from 7 clinical settings across 4 National Health Service Trusts in the United Kingdom. The data set consisted of 52 video consultation recordings (of patients with diabetes, gestational diabetes, cancer, heart failure, orthopedic problems, long-term pain, and neuromuscular rehabilitation) and interviews with all participants involved in these consultations. Using Linguistic Ethnography, which embeds detailed analysis of verbal and nonverbal communication in the context of the interaction, we examined the interactional, technological, and clinical work carers did to facilitate video consultations and help patients and clinicians overcome challenges of the remote and video-mediated context., Results: Most patients (40/52, 77%) participated in the video consultation without support from an informal carer. Only 23% (12/52) of the consultations involved an informal carer. In addition to facilitating the clinical interaction (eg, answering questions on behalf of the patient), we identified 3 types of work that informal carers did: facilitating the use of technology; addressing problems when the patient could not hear or understand the clinician; and assisting with physical examinations, acting as the eyes, ears, and hands of the clinician. Carers often stayed in the background, monitoring the consultation to identify situations where they might be needed. In doing so, copresent carers reassured patients and helped them conduct the activities that make up a consultation. However, carers did not necessarily help patients solve all the challenges of a video consultation (eg, aiming the camera while laying hands on the patient during an examination). We compared cases where an informal carer was copresent with cases where the patient was alone, which showed that carers provided an important safety net, particularly for patients who were frail and experienced mobility difficulties., Conclusions: Informal carers play a critical role in making video consultations safe and feasible, particularly for patients with limited technological experience or complex needs. Guidance and research on video consulting need to consider the availability and work done by informal carers and how they can be supported in providing patients access to digital health care services., (©Lucas Martinus Seuren, Sara Shaw. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 31.05.2024.)

Objectives: To examine children and young people's (CYP), caregivers' and healthcare professionals' (HCPs) views or experiences of facilitators and barriers to CYP access to UK primary care services to better understand healthcare inequity. To explore differences across CYP subpopulations with greater health needs from deprived areas, identifying as ethnic minorities, with experiences of state care, special educational needs or disabilities, chronic conditions or mental health problems., Design: Scoping review., Eligibility Criteria: Included studies were in English, published 2012-2022 and reported: the views/experiences of CYP (0-25 years), caregivers or HCPs about accessing UK primary care; using quantitative or qualitative empirical methods., Data Sources: PubMed, CINAHL, Web of Science, PsycINFO and Scopus., Results: We included 47 reports (46 studies). CYP/caregivers' decision to access care was facilitated by CYP/caregivers' or their family/friends' ability to identify a health issue as warranting healthcare attention. Barriers to accessing care included perceived stigma (eg, being seen as a bad parent), embarrassment and discrimination experiences. CYP and caregivers believed longer opening hours could facilitate more timely access to care. Caregivers and HCPs reported that delayed or rejected referrals to secondary or adult care were a barrier to having needs met, especially for CYP with poor mental health. CYP and caregivers in numerous studies emphasised the importance of communication and trust with HCPs, including taking their concerns seriously, being knowledgeable and providing continuity of care for CYP. Common barriers reported across high-need subpopulations were caregivers needing knowledge and confidence to advocate for their child, gaps in HCP's knowledge and a lack of connectedness between primary and secondary care., Conclusions: Connecting general practices and community health workers/services, improving CYP/caregivers' understanding of common childhood conditions, addressing HCP's knowledge gaps in paediatric care and integrated approaches between primary and secondary care may reduce inequity in access., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Objective: To systematically map evidence to answer the research question: What is the relationship between the characteristics of children and young people (CYP) or their caregivers and primary care service use in the UK, taking into account underlying healthcare needs? DESIGN: Scoping review., Setting: Primary care., Eligibility Criteria: English-language quantitative or mixed-methods studies published between 2012 and 2022., Data Sources: Medline, Embase, Scopus and Web of Science Social Sciences Citation Index, and grey literature., Results: 22 eligible studies were identified, covering general practice (n=14), dental health (n=4), child mental health (MN) services (n=3) and immunisation (n=1). Only eight studies (36%) controlled for variables associated with healthcare need (eg, age, birth weight and long-term conditions). In these, evidence of horizontal inequity in primary care use was reported for CYP living in deprived areas in England, with and without complex needs. Horizontal inequity was also identified in primary care MN referrals for CYP in England identifying as mixed-race, Asian or black ethnicity, compared with their white British peers. No evidence of horizontal inequity was observed, however, in primary care use for CYP in England exposed to parental depression, or for CYP children from low-income households in Scotland. Increasing CYP's age was associated with decreasing primary care use across included studies. No studies were found regarding CYP from Gypsy or Traveller communities, children in care, or those with disabilities or special educational needs., Conclusions: There is evidence that socioeconomic factors impact on CYP's primary care use, in particular age, ethnicity and deprivation. However, better quality evidence is required to evaluate horizontal inequity in use and address knowledge gaps regarding primary care use for vulnerable CYP populations and the impact of policy and practice related 'supply side' of primary care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Objectives: There are approximately 5.3 million informal carers in the United Kingdom, many of whom support family in their health despite being unpaid and often unsupported. Many visit pharmacies to collect medicines and look for advice. This work explores informal carer support within community pharmacies (CP)., Methods: Semi-structured video interviews exploring perspectives on the role of CP in supporting carers were conducted in autumn 2022. The study received institutional ethical approval. Interviews were audio-recorded, transcribed verbatim, and analysed using a reflexive thematic approach., Key Findings: In total 25 interviews were conducted with 13 carers and 12 pharmacy staff. Three themes were identified:-What support do carers need through CP?-medicines management, navigating services, and carers health and wellbeing.-Barriers to CP better supporting carers-relationships with CP, carer needs, identification as a 'carer'.-Enablers to CP better supporting carers-support is a team effort, and CP as a community 'hub'., Conclusions: There is a trusted relationships between carers and pharmacy staff which can contribute to establishing pharmacies as a safe space of support, this includes medicines-specific support and navigating services, but also carer health and wellbeing support. Pharmacy staff may need to reconsider approaches to identifying and supporting carers and not just treating them as an extension of supporting a patient. In making this support accessible, relationships with pharmacy staff are important, as well as embracing CP as a 'community hub', although pharmacy staff may need training and information to facilitate them in this role., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Royal Pharmaceutical Society.)

This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care., Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services., Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework., Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled., Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations., Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: This process evaluation was conducted in parallel to the randomised controlled feasibility trial of NIDUS-Professional, a manualised remote dementia training intervention for homecare workers (HCWs), delivered alongside an individualised intervention for clients living with dementia and their family carers (NIDUS-Family). The process evaluation reports on: (i) intervention reach, dose and fidelity; (ii) contexts influencing agency engagement and (iii) alignment of findings with theoretical assumptions about how the intervention might produce change., Methods: We report proportions of eligible HCWs receiving any intervention (reach), number of sessions attended (dose; attending ≥4/6 main sessions was predefined as adhering), intervention fidelity and adherence of clients and carers to NIDUS-Family (attending all 6-8 planned sessions). We interviewed HCWs, managers, family carers and facilitators. We integrated and thematically analysed, at the homecare agency level, qualitative interview and intervention recording data., Results: 32/141 (23%) of eligible HCWs and 7/42 (17%) of family carers received any intervention; most who did adhered to the intervention (89% and 71%). Intervention fidelity was high. We analysed interviews with 20/44 HCWs, 3/4 managers and 3/7 family carers, as well as intervention recordings involving 32/44 HCWs. All agencies reported structural challenges in supporting intervention delivery. Agencies with greater management buy-in had higher dose and reach. HCWs valued NIDUS-Professional for enabling group reflection and peer support, providing practical, actionable care strategies and increasing their confidence as practitioners., Conclusion: NIDUS-Professional was valued by HCWs. Agency management, culture and priorities were key barriers to implementation; we discuss how to address these in a future trial., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: Current and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis., Methods: We conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis., Results: Benefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis., Conclusions: In this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers., (© 2024. The Author(s).)

Competing Interests: Competing interests: none.

Purpose: Many cancer patients have problems eating which are usually connected to taste and smell alterations due to side effects of cancer treatment. These problems have consequences both in terms of malnutrition and reduced quality of life. In order to explore social and psychological consequences of eating problems in cancer patients, qualitative interviews were conducted with cancer patients, their caregivers and healthcare professionals., Methods: The study was conducted in three European countries (Poland, Spain and the UK) that differed in culture, oncology care approaches and availability of nutritional products targeted to cancer patients in the market., Results: Differences in the social role of eating between the three European countries were observed which subsequently influenced the impact of eating problems for cancer patients in these countries. Furthermore, the study found that problems with food affect not only the quality of life of cancer patients, but can also distress their caregivers, who are often unable to cope with such food-related problems. In addition, the study showed that commercially available nutritional products for cancer patients focus on nutritional value but tend to neglect an important aspect of eating, which is the enjoyment of food, both individually and socially., (© 2024. The Author(s).)

Introduction: There is substantial diversity within and between contexts globally in caregiving practices and family composition, which may have implications for the early interaction's infants engage in. We draw on data from the Brain Imaging for Global Health (BRIGHT, www.globalfnirs.org/the-bright-project) project, which longitudinally examined infants in the UK and in rural Gambia, West Africa. In The Gambia, households are commonly characterized by multigenerational, frequently polygamous family structures, which, in part, is reflected in the diversity of caregivers a child spends time with. In this paper, we aim to 1) evaluate and validate the Language Environment Analysis (LENA) for use in the Mandinka speaking families in The Gambia, 2) examine the nature (i.e., prevalence of turn taking) and amount (i.e., adult and child vocalizations) of conversation that infants are exposed to from 12 to 24 months of age and 3) investigate the link between caregiver diversity and child language outcomes, examining the mediating role of contingent turn taking., Method: We obtained naturalistic seven-hour-long LENA recordings at 12, 18 and 24 months of age from a cohort of N = 204 infants from Mandinka speaking households in The Gambia and N = 61 infants in the UK. We examined developmental changes and site differences in LENA counts of adult word counts (AWC), contingent turn taking (CTT) and child vocalizations (CVC). In the larger and more heterogenous Gambian sample, we also investigated caregiver predictors of turn taking frequency. We hereby examined the number of caregivers present over the recording day and the consistency of caregivers across two subsequent days per age point. We controlled for children's cognitive development via the Mullen Scales of Early Learning (MSEL)., Results: Our LENA validation showed high internal consistency between the human coders and automated LENA outputs (Cronbach's alpha's all >.8). All LENA counts were higher in the UK compared to the Gambian cohort. In The Gambia, controlling for overall neurodevelopment via the MSEL, CTT at 12 and 18 months predicted CVC at 18 and 24 months. Caregiver consistency was associated with CTT counts at 18 and 24 months. The number of caregivers and CTT counts showed an inverted u-shape relationship at 18 and 24 months, with an intermediate number of caregivers being associated with the highest CTT frequencies. Mediation analyses showed a partial mediation by number of caregivers and CTT and 24-month CVC., Discussion: The LENA provided reliable estimates for the Mandinka language in the home recording context. We showed that turn taking is associated with subsequent child vocalizations and explored contextual caregiving factors contributing to turn taking in the Gambian cohort., Competing Interests: Competing interest The authors declare no competing interests., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals-provider, further referrals-private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to 'luck', with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families.

Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment., Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals., Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019-2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis., Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self-management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies., Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences., Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Assessing the impact of caregiving for older parents on caregivers' health is increasingly important in the context of population changes and curtailment of state provided services. This has been extensively studied but results are inconsistent, possibly reflecting a lack of attention to health-related selection into the caregiver role. We use data from a nationally representative UK longitudinal study to analyse differences in the health of people aged 40-69 at baseline by whether they were 'eligible' to provide parent care (with a living parent/parent-in-law) and by whether they subsequently assumed a caregiver role. We measured initial health status using a latent variable derived from three observer-recorded indicators as well as self-reported health. We analysed trajectories of physical and mental health over a seven-year follow-up for those providing intensive care (20+ hours per week) to a parent or parent-in-law, providers of lesser amounts of care, and non-caregivers. Outcomes were measured using the SF-12 indicators of mental and physical health. RESULTS: showed that those with a living parent or parent-in-law had better health than those lacking these relatives. However, among potential caregivers for a parent or parent-in-law, those assuming intensive caregiving had poorer initial health than non-caregivers or those who became providers of less intensive care. Fixed effects analyses of follow-up data showed that the mental health of intensive caregivers deteriorated. However, the physical health of intensive caregivers with low levels of education improved. RESULTS: show the importance of taking account of whether people are at risk of providing parental care and initial health status when assessing impacts of caregiving on health. They also indicate differential effects of caregiving on health depending on socio-demographic characteristics and reaffirm the need for greater supports for those providing substantial amounts of care to older parents., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objectives: The aim of this study was to refine a draft of the ACTiON FALLS LD programme based on the views of adults with an intellectual disability (AWID), carers and healthcare professionals (HCPs)., Design, Setting and Participants: The semistructured interview study included HCP as well as AWID and carers supporting AWID living in the community. Community settings included sheltered living, supported living, AWID living at home with family carers or independently. The interview study explored the first draft of the ACTiON FALLS LD programme as well as the wider falls management for AWID. Interviews with AWID were developed to include a range of approaches (eg, case studies, pictures) to support inclusive participation. Individual interviews were digitally recorded and transcribed. Researcher notes were used during interviews with AWID. All data were analysed using the principles of framework analysis., Results: 14 HCP, 8 carers and 13 AWID took part in the interview process. Five key themes were identified: programme components, programme design, programme approach, who would use the programme and programme delivery., Conclusions: The views of AWID, HCP and carers showed the need to consider the impact of risk perception, anxiety and fear of falling in the adaption of the ACTiON FALLS programme. The programme needs to be accessible and support the inclusion of AWID in managing falls and ultimately fulfil the requirement for a proactive and educational tool by all., Competing Interests: Competing interests: PL was the lead of the Falls in Care Homes trial and led the development of the ACTiON FALLS programme for community and care home settings, KR was a researcher on the Falls in Care Homes trial., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: This study examines gender differences in parental attitudes toward risky play for 5- to 11-year-old boys and girls in Britain., Methods: Analyses use data from the cross-sectional, nationally representative British Child Play Survey. Survey respondents were caregivers of primary-school-aged children living in Britain. Parent self-reported their risk tolerance in play via the Tolerance for Risk in Play Scale (TRiPS) and the Risk Engagement and Protection Survey (REPS). The REPS includes subscales that assess caregiver attitudes around "Protection from Injury" (PFI) and "Engagement with Risk" (EWR) in relation to children's play. Multiple linear regression compared caregiver gender differences in TRiPS, REPS-PFI, and REPS-EWR at the item level, and overall. Associations between child gender and these scales were also examined., Results: Among 1919 caregivers, no significant gender differences emerged in mean TRiPS (P = .72), REPS-EWR (P = .58), and REPS-PFI (P = .34) scores. Activity-specific differences were evident in caregivers' tolerance for individual risky play activities (15/31 activities). Parents of boys exhibited higher risk tolerance (B = -4.48, P < .01) and willingness for their child to engage in risky play (B = -0.63, P < .01) than parents of girls., Conclusions: While there was no difference between male and female caregivers overall attitudes, gender differences were prominent for specific play activities and attitudes, with male caregivers demonstrating higher tolerance for the riskiest activities. Parents of boys expressed more permissive attitudes toward engagement in risky play. Further work is needed to identify why there is gender-related variation in these attitudes and should be considered in interventions that support parents in enabling adventurous play opportunities for children.

Background: People with dementia commonly have impaired social functioning and may not recognize this. This lack of awareness may result in worse outcomes for the person and their family carers., Objective: We aimed to characterize awareness of social functioning in dementia and describe its association with dementia severity., Methods: Multi-center cross-sectional study of people aged >65 years with dementia and family informants recruited from Germany, Japan and the United Kingdom. We used the Social Functioning in Dementia (SF-DEM) scale, assessing "spending time with other people" (domain 1), "communicating with other people" (domain 2), and "sensitivity to other people" (domain 3), and calculated lack of awareness into social functioning as the discrepancy between patient and informant ratings., Results: 108 participants with dementia (50.9% women), mean age = 78.9 years, and mean MMSE score = 22.7. Patient and informant domain 1 ratings did not differ, but patient-rating was higher than carers for domain 2 (11.2 versus 10.1; p = 0.003) and domain 3 (9.7 versus 8.1; p < 0.001). Sixty people with dementia overestimated their overall social functioning, 30 underestimated, and 18 gave ratings congruent with their informant. Performance on the MMSE and its sub-domains was not associated with SF-DEM discrepancy score., Conclusions: We found that awareness of social functioning in dementia was a multidimensional concept, which varies according to subdomains of social functioning. Clinicians should help family members understand and adapt by explaining their relative with dementia's lack of awareness about aspects of their social functioning.

Background: The health of unpaid caregivers is poorer, on average, than in non-caregivers. There has been little focus on how health changes when becoming a caregiver and whether this varies by age, gender, and caregiving intensity. We aimed to investigate the mental and physical health changes involved with becoming a caregiver and whether these associations varied by gender, caregiving intensity, or age., Methods: This study used data from the UK Household Longitudinal Study (2009-20) to examine mental and physical health changes around the transition to becoming a caregiver in adults aged 16 years and older. We included adults with information on care, complete covariates needed for matching, and at least one measure of health before or after becoming a caregiver (or matched non-caregiver). Health was measured via General Health Questionnaire-12 (GHQ-12, psychological distress) and 12-item Short Form Survey (SF-12, physical and mental functioning). We applied piecewise growth curve modelling with propensity score matching to model trajectories of mental and physical health for caregivers and matched non-caregivers. Analyses were stratified by age group, gender, and caregiving intensity., Findings: Sample sizes varied from 3025 (GHQ-12 analyses in early adulthood) to 5785 (SF-12 analyses in early mid-adulthood). Psychological distress increased during transition to caregiving for all ages, particularly in those younger than 64 years, those providing care for 20 h or more per week, and for someone living within the household. Mental health functioning worsened during caregiving transition for those aged 30-64 years, those providing 20 h or more per week, and for those caring for someone within the household. Physical health functioning did not change but there was evidence of lower levels of functioning before caregiving. Changes in mental and physical health upon transition to caregiving did not differ by gender., Interpretation: Our findings highlight the importance of early identification of and support for caregivers, including younger caregivers. This is important to break the cycle of caregiving and future care need. Health services staff, including general practitioners and hospital discharge teams, are well positioned for early identification of caregivers. We also encourage particular support for the mental health of caregivers and particularly those who become caregivers at a younger age., Funding: The UK Economic and Social Research Council., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2024 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Background: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom., Methods: We undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases., Results: Findings suggested that a wide range of patients, parents and carers do not have coordinated care. For example, few participants reported having a care coordinator (12% patients, 14% parents/carers), attending a specialist centre (32% patients, 33% parents/carers) or having a care plan (10% patients, 44% parents/carers). A very small number of patients (2%) and parents/carers (5%) had access to all three-a care coordinator, specialist centre and care plan. Fifty four percent of patients and 33% of parents/carers reported access to none of these. On the other hand, a higher proportion of healthcare professionals reported that families with rare conditions had access to care coordinators (35%), specialist centres (60%) and care plans (40%)., Conclusions: Care for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions., (© 2023. The Author(s).)

Objectives: A range of preference-based quality of life (QoL) measures have been proposed for use with informal carers. Qualitative evaluation of validity and feasibility of the measures is an important step in understanding whether measures will work as intended. At present, little is known about the performance of different types of preference-based QoL measures with informal carers. The objective of this study was to qualitatively assess the feasibility, content validity (including face validity), and acceptability of 5 QoL measures (the Carer Experience Scale, CarerQoL-7D, ASCOT-C, ICECAP-A, and EQ-5D-5L) with informal carers., Methods: A total of 24 "think-aloud" interviews were conducted with a cross-section of carers of adults in the United Kingdom. This think-aloud process was followed by semistructured discussion to probe issues of validity and feasibility in more detail. The interview data were transcribed, coded to identify the frequency of errors in completing the QoL measures and thematically analyzed to study the validity, feasibility, and acceptability of the measures., Results: Few errors (3%-7% per item) were identified in completing each of the measures with little distinct pattern. Most participants found the measures to be concise, clear, and relevant. Challenges included relevance, context, time period, missing items, multiple questions, and response options. Informal carers generally expressed a preference for using a care-related QoL measure., Conclusions: Existing preference-based QoL measures have encouraging validity and feasibility within a mixed sample of informal carers, with minor challenges raised. These challenges ought to be considered, alongside the decision context, when administering QoL measures in this context., (Copyright © 2023. Published by Elsevier Inc.)

Background: Unplanned critical care admissions following in-hospital deterioration in children are expected to impose a significant burden for carers across a number of dimensions. One dimension relates to the financial and economic impact associated with the admission, from both direct out-of-pocket expenditures, as well as indirect costs, reflecting productivity losses. A robust assessment of these costs is key to understand the wider impact of interventions aiming to reduce in-patient deterioration. This work aims to determine the economic burden imposed on carers caring for hospitalised children that experience critical deterioration events., Methods: Descriptive study with quantitative approach. Carers responded to an online survey between July 2020 and April 2021. The survey was developed by the research team and piloted before use. The sample comprised 71 carers of children admitted to a critical care unit following in-patient deterioration, at a tertiary children's hospital in the UK. The survey provides a characterisation of the carer's household and estimates of direct non-medical costs grouped in five different expenditure categories. Productivity losses can also be estimated based on the reported information., Results: Most carers reported expenditures associated to the child's admission in the week preceding the survey completion. Two-thirds of working carers had missed at least one workday in the week prior to the survey completion. Moreover, eight in ten carers reported having had to travel from home to the hospital at least once a week. These expenditures, on average, amount to £164 per week, grouped in five categories (38% each to travelling costs and to food and drink costs, with accommodation, childcare, and parking representing 12%, 7% and 5%, respectively). Additionally, weekly productivity losses for working carers are estimated at £195., Conclusion: Unplanned critical care admissions for children impose a substantial financial burden for carers. Moreover, productivity losses imply a subsequent cost to society. Even though subsidised hospital parking and on-site accommodation at the hospital contribute to minimising such expenditure, the overall impact for carers remains high. Interventions aiming at reducing emergency critical care admissions, or their length, can be crucial to further contribute to the reduction of this burden., Trial Registration: Current Controlled Trials ISRCTN61279068, date of registration 07/06/2019, retrospectively registered., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Objectives: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia., Methods: Informed by critical realism, semi-structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation., Results: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70-89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a 'push system', (2) ED as the 'last resort', and (3) Taking dementia 'seriously'. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma., Conclusion: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life-limiting condition may help to reduce reliance on the ED through essential development of post-diagnostic care, from diagnosis to the end of life., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Objectives: Ensuring the continuity of home support services has become increasingly important due to challenges arising from ageing demographics and healthcare staffing shortages. However, there is a lack of validated measurements specifically designed for assessing service continuity in this context. The primary objective of this study is to develop and validate scales that capture the multidimensional nature of home support service continuity (HSSC), incorporating informational continuity, management continuity and relational continuity as its underlying components. Subsequently, these scales are employed to measure the overall level of continuity experienced within home support services and investigate its association with service quality., Methods: This study used a cross-sectional survey design with convenience sampling. Direct caregivers in the UK were recruited through the Prolific UK online platform, while direct caregivers in British Columbia, Canada were recruited through local health authorities and home support agencies. A total of 550 direct caregivers completed the online survey following the approved ethics protocol. Structural equation modelling was employed to evaluate HSSC and it underlying components. Furthermore, the study investigated the influence of HSSC on service quality within these two samples., Results: The quantitative tests confirmed that HSSC comprises three first-order continuity components. These components showed significant loadings on HSSC in the Canadian sample (N=367) (λ informational =0.81, λ management =0.93, λ relational =0.38) at p<0.01 level. This finding was further supported in the UK sample (N=183) (λ informational =0.87, λ management =0.90, λ relational =0.93) at p<0.01 level. In both samples, the overall HSSC showed a positive correlation with service quality (path coefficient for the Canadian sample: b HSSC&#95;employee perceived service quality (EPSQ) =0.22, p<0.01; the UK sample: b HSSC&#95;EPSQ =0.70, p<0.01)., Conclusions: The results support the conceptualisation of HSSC as a second-order latent construct. The newly developed and validated scales for the three first-order constructs identify specific items that could be targeted to improve HSSC and service quality., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Pancreatic cancer is a disease with poor life expectancy and high symptom burden. The experiences of the spouses, family and friends who care for this group is poorly understood, especially during palliative care and within the UK., Aims: To highlight the current gaps within research and provide some insight into the challenges faced by carers assisting those living with pancreatic cancer, and how community nurses can support this group., Methods: A total of five research databases were searched using the terms 'pancreatic cancer', 'carer' and 'experience'. Cancer and palliative charity websites were also referenced for grey literature., Findings: There is limited research exploring pancreatic cancer carers experiences in the UK healthcare system and community. Available information suggests that this group is likely to face significant psychological and physical challenges to caring., Conclusions: It is vital for community nurses to have an awareness of challenges this group face, to better recognise and support these vulnerable carers.

Objective and research design This study investigated whether the relationship between experiential avoidance and carer depression is mediated by cognitive fusion using path analysis and whether this model differs between family carers from Japan, Spain, and the UK using multi-group path analysis. Results The whole sample model ( N  = 745) showed a good fit to the data. The direct effect of experiential avoidance on carer depression ( β  = .10) and its indirect effect on carer depression through cognitive fusion ( β  = .15) were significant. Examined variables accounted for 45% of the variance of depression. Multi-group path analysis confirmed the same pattern of indirect path across 3 countries, while the direct path was no longer significant in Spanish and UK samples. Conclusion These findings suggest that targeting cognitive fusion may be particularly critical in culturally diverse carers and pre-emptive efforts to reduce experiential avoidance using psychological techniques may be beneficial among family carers prone to cognitive fusion regardless of cultural differences.

Objectives: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied., Methods: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests., Results: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support., Conclusions: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

This article casts light on informal caregiving, an essential aspect of the international postgraduate researcher (PGR) experience, but which is often invisible in literature and discourses on international education. Drawing from qualitative semi-structured interviews with international PGRs in a British university, it highlights their dual role as care recipients and lesser known caregivers across transnational and local spaces. It gives insights into the forms and dynamics of care that they give to and receive from family, friends and others, uncovering the emotional and affective aspects of undertaking a postgraduate research degree overseas which impact on their mental wellbeing. The findings have implications for the improvement of university support for international PGRs which has relevance for the wider international student community.

Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children's play. Understanding the importance and impact of environmental factors on children's play is essential to being able to support their participation in play. Data were collected from caregivers (mostly parents) of children living with life-threatening/limiting conditions, who were between 5 and 11 years old. Thirty-nine participants were recruited from two children hospitals and two hospices in Kuwait and in the United Kingdom. The participants' perspectives were explored using Q methodology. By-person factor analysis was used to explore the ranking of each statement. Content analysis was used to analyse the participants' verbal comments. The most important environmental factors were the need for others to share play and get assistance to facilitate play. However, this is not always possible as these conditions, the life-threatening/limiting conditions, may be socially isolating. Children also experience limitations in accessing play resources that match their abilities and meet their play needs. Being aware and responsive to children's play needs is essential for building appropriately supportive play environments for children living with life-threatening/life-limiting conditions.

Objectives: To describe and reflect on the consumer engagement approaches used in five living guidelines from the perspectives of consumers (i.e., patients, carers, the public, and their representatives) and guideline developers., Study Design and Setting: In a descriptive report, we used a template to capture engagement approaches and the experiences of consumers and guideline developers in living guidelines in Australia and the United Kingdom. Responses were summarized using descriptive synthesis., Results: One guideline used a Consumer Panel, three included two to three consumers in the guideline development group, and one did both. Much of our experience was common to all guidelines (e.g., consumers felt welcomed but that their role initially lacked clarity). We identified six challenges and opportunities specific to living guidelines: managing the flow of work; managing engagement in online environments; managing membership of the panel; facilitating more flexibility, variety and depth in engagement; recruiting for specific skills-although these can be built over time; developing living processes to improve; and adapting consumer engagement together., Conclusion: Consumer engagement in living guidelines should follow established principles of consumer engagement in guidelines. Conceiving the engagement as living, underpinned by a living process evaluation, allows the approach to be developed with consumers over time., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

COVID-19 has posed serious challenges for informal carers living in the UK. This article examines some of the specific challenges facing carers and the resources they used to manage them throughout the first UK lockdown. We used a framework approach to analyse naturalistic, longitudinal data from 30 carers taking part in 96 of Mobilise's daily Virtual Cuppas between March and July 2020. We found that lack of information and social restrictions cumulatively impacted carers' sense of certainty, control and motivation. This took an emotional toll on the carers, leading to exhaustion and burden. However, carers quickly established new routines and used humour and self-care to actively manage their wellbeing. Carers received support but also provided it to those in need, including fellow members of the caregiving community, supporting an ecological approach to carer resilience. Our findings may be used to anticipate challenges and promote protective resilience resources in future lockdowns.

Objectives: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost-effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia., Methods: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies., Results: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post-intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention., Conclusions: Culturally adapted START was acceptable and feasible in South Asian and Black UK-based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Early years caregivers can play a key role in young children's eating and the prevention of childhood obesity. The UK National Diet and Nutrition Survey (NDNS) is a large representative survey collecting detailed food and nutrition consumption data. Using these data, the aim of this study was to investigate the relationship between dietary intake of preschool children in the UK aged 2 to 4 years and accompanying adult/s. Nutrition consumption data from 1218 preschool children from years 1 to 8 of the 2008-2016 NDNS were accessed. Dietary data were captured using 3 or 4 day estimated food diaries. Regression analyses revealed significant differences in consumption when children were not accompanied by their parents. Compared with when children were with parents, children consumed significantly more energy dense meals (0·32 kJ/g, 95% CI 0·1-0·6 kJ/g), energy (62 kJ/g, (95% CI 27-97 kJ)) Na (19 mg, (95 % CI 6, 32)), added sugars (0·6 g, (95 % CI 0·1, 1·1)), vegetables (3 g, (95 % CI 1, 4)), total grams (12 g, (95 % CI 3, 21)) and saturated fat (0·2 g, (95 % CI 0·1, 0·4)) per eating occasion when accompanied by wider family. When children were accompanied by a formal childcare provider, they consumed significantly lower energy dense meals (-0·9 kJ/g, (95% CI -1·4 - -0·3 kJ/g)), less added sugars (-1·6 g, (95 % CI -2·4, -0·8)) and more fruit (12 g, (95 % CI 3, 21)) per eating occasion than when they were with their parents. The results demonstrate that non-parental caregivers might be an important target to promote healthy eating in young children. Further research is needed to establish which caregivers would benefit most.

Objectives: To evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers' experiences with the programme., Design: Qualitative interview study with two phases: (1) preparation phase; (2) pilot phase., Setting: Private residences of community-dwelling people with dementia in the UK and the Netherlands., Participants: Family carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews)., Intervention: Namaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions., Results: Phase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7-10)., Conclusion: We recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5-2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia., Trial Registration Number: NL5570., Competing Interests: Competing interests: HJAS became the associate director of Namaste Care International (non-financial association) after the data collection was completed and the data were analysed., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)