Commissioning and co-production in health and care services in the United Kingdom and Ireland: An exploratory literature review.

INTRODUCTION: This exploratory literature review seeks to examine the literature around commissioning processes in the co-production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co-production in service design and delivery? What are the contextual factors that influence these processes? METHOD: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008-2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty-seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions. RESULTS: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co-production; navigating relationships and the collective voice. CONCLUSION: Commissioning processes were commonly a barrier to the co-production of health and care services. Though co-production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer-term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed. PATIENT AND PUBLIC CONTRIBUTION: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement.

Does the impact of bereavement vary between same and different gender partnerships? A representative national, cross-sectional study.

BACKGROUND: Data suggest poorer bereavement outcomes for lesbian, gay and bisexual people, but this has not been estimated in population-based research. This study compared bereavement outcomes for partners of same-gender and different-gender decedents. METHODS: In this population-based, cross-sectional survey of people bereaved of a civil partner or spouse 6-10 months previously, we used adjusted logistic and linear regression to investigate outcomes of interest: (1) positive screen on Inventory of Complicated Grief (ICG), (2) positive screen on General Health Questionnaire (GHQ), (3) grief intensity (ICG) and (4) psychiatric symptoms (GHQ-12). RESULTS: Among 233 same-gender partners and 329 of different-gender partners, 66.1% [95% confidence interval (CI) 60.0-72.2] and 59.2% [95% CI (53.9-64.6)] respectively screened positive for complicated grief on the ICG, whilst 76.0% [95% CI (70.5-81.5)] and 69.3% [95% CI (64.3-74.3)] respectively screened positive on the GHQ-12. Same-gender bereaved partners were not significantly more likely to screen positive for complicated grief than different-gender partners [adjusted odds ratio (aOR) 1.56, 95% CI (0.98-2.47)], p = 0.059, but same-gender bereaved partners were significantly more likely to screen for psychiatric caseness [aOR 1.67 (1.02, 2.71) p = 0.043]. We similarly found no significant association of partner gender with grief intensity [B = 1.86, 95% CI (-0.91to 4.63), p = 0.188], but significantly greater psychological distress for same-gender partners [B = 1.54, 95% CI (-0.69-2.40), p < 0.001]. CONCLUSIONS: Same-gender bereaved partners report significantly more psychological distress. In view of their poorer sub-clinical mental health, clinical and bereavement services should refine screening processes to identify those at risk of poor mental health outcomes.

LGBT+ partner bereavement and appraisal of the Acceptance-Disclosure Model of LGBT+ bereavement: A qualitative interview study.

BACKGROUND: Support from social networks is vital after the death of a partner. Lesbian, gay, bisexual and/or transgender (LGBT+) people can face disenfranchisement and isolation in bereavement. The Acceptance-Disclosure Model (of LGBT+ bereavement) posits that experiences are shaped by the extent to which individuals feel able to disclose their bereavement to others, and whether that loss is acknowledged appropriately. AIM: To explore LGBT+ specific experiences of partner bereavement; determine decision-making processes regarding disclosure of relationships/identities; and appraise the Acceptance-Disclosure Model using primary qualitative data. DESIGN: Exploratory in-depth qualitative interview study positioned within a social constructivist paradigm. Data were analysed using inductive and deductive reflexive thematic analysis. SETTING/PARTICIPANTS: 21 LGBT+ people from across England bereaved of their civil partner/spouse. RESULTS: Participants described LGBT+ specific stressors in bereavement: lack of recognition of their loss; inappropriate questioning; unwanted disclosure of gender history; and fears of discrimination when accessing support. Disclosure of LGBT+ identities varied across social networks. Some participants described hiding their identities and bereavement to preserve relationships, and challenging intersections between LGBT+ identities and other aspects of culture or self. These findings provide primary evidence to support the Acceptance-Disclosure Model. CONCLUSIONS: LGBT+ people face additional stressors in bereavement. Not all LGBT+ people want to talk directly about their relationships/identities. Sensitive exploration of support needs, aligned with preferences around disclosure of identities, can help foster trust. Five recommendations for inclusive practice are presented. Further research should consider whether the Acceptance-Disclosure Model has utility to explain bereavement experiences for other isolated or disenfranchised groups.

Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study.

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. AIM: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. DESIGN: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. SETTING/PARTICIPANTS: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. FINDINGS: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. CONCLUSIONS: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making.

The role of sexual orientation, age, living arrangements and self-rated health in planning for end-of-life care for lesbian, gay and bisexual (LGB) older people in the UK.

This article reports on findings from the quantitative phase of a two-year research project designed to explore end-of-life care experiences and needs of lesbian, gay, bisexual and transgender people. We draw on a subset of the sample (N = 180/237) to analyse the relationship between advance care planning, sexual orientation, living arrangements and self-rated health. The results contribute to a growing body of evidence on how sexual minorities approach and make decisions on advance care planning. A greater understanding of such patterns could help inform the way healthcare professionals engage in conversations about end-of-life care planning with older LGB people.

'My wife is my doctor at home': A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting.

BACKGROUND: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. AIM: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. DESIGN: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. PARTICIPANTS: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). FINDINGS: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient's 'doctor' at home-assessing patient's symptoms, administering drugs, and providing hands-on care. CONCLUSION: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

Uncertain trajectories in old age and implications for families and for palliative and end of life care policy and practice.

The provision of high-quality end-of-life care for all is high on national (and international) agendas, but areas of unmet needs identified includes elderly people. This article draws on an autoethnographic account of the dying and death of my father to identify and interrogate disjunctions between end-of-life care policy and commonplace experiences of elderly people who die in a hospital setting. There are significant disjunctions between the "blunt" tools of end-of-life care policy and the everyday experiences of the dying and death of an elderly patient and an urgent need to improve end-of-life care for our oldest generations.

Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study.

BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis. SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.

BACKGROUND: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. METHODS: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. RESULTS: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. CONCLUSIONS: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

Older bisexual people: Implications for social work from the 'Looking Both Ways' study.

There is a growing social work literature about lesbian, gay, bisexual, and transgender (LGBT) older people. However, research and guidance are predominantly based on the experiences of older gay men and, to a lesser extent, older lesbians. There is little to help practitioners work with older bisexual people. The Looking Both Ways study aimed to contribute to this gap in knowledge. We undertook in-depth purposely sampled qualitative interviews with 12 people aged over 50, all of whom have bisexual relationship histories and half of whom also currently identify as bisexual. There were three main findings. First, biphobia (prejudice against bisexual people) impacts on older people with bisexual histories in ways that may affect their well-being in later life. Second, concerns around receiving care are similar in some ways and different in others from the concerns of lesbians and gay men. Third, people with bisexual relationship histories may have developed strong support networks and resilience, factors that may be very beneficial in later life. Three recommendations for social work professionals were identified: 1) understand biphobia, 2) recognize the legitimacy of concerns about receiving care, and 3) ask about support networks rather than assuming family support.

Between loss and restoration: The role of liminality in advancing theories of grief and bereavement.

A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been explored. To advance grief theory this paper reports analysis of the survey free-text data to examine the relationship between social support and emotional responses to bereavement. Individuals bereaved of a civil partner or spouse 6-10 months previously were identified through death registration data. 569/1945 (29 %) completed surveys were received. Of those, 311 participants (55 %) provided responses to two free-text questions which asked about their 'feelings since the death of their partner or spouse', and 'about the support around' them. Data were analysed using corpus-assisted discourse analysis and the discourse dynamics approach for figurative language. Participants described diverse emotional responses to the bereavement (e.g. sadness, anger, denial, acceptance), and the value of formal and informal bereavement support. Although many of the experiences described are accounted for in existing grief theory, some participants described a liminal experience not recognised within these theories. They felt trapped, unable to engage with loss or restoration, and unable to move forward as their planned future no longer existed. They sought out 'communitas' (solidarity in experiences), but often found support from their social networks had diminished. Metaphors were used to describe this liminality, with partner grief expressed as a dark agentic force, a monster, an abyss, and as water. The findings of this study offer original insights into experiences and trajectories of bereavement, and our understandings of prolonged or complicated grief. A novel model 'Between Loss and Restoration' is presented to include these experiences. Recognition of the place for liminality within the spectrum of grief experiences could enhance grief literacy and improve formal and informal bereavement support provision.

Peer education for advance care planning: volunteers' perspectives on training and community engagement activities.

BACKGROUND: Peer education by volunteers may aid attitudinal change, but there is little understanding of factors assisting the preparation of peer educators. This study contributes to conceptual understandings of how volunteers may be prepared to work as peer educators by drawing on an evaluation of a training programme for peer education for advance care planning (ACP). OBJECTIVES: To report on volunteers' perspectives on the peer education training programme, their feelings about assuming the role of volunteer peer educators and the community engagement activities with which they engaged during the year after training. To examine broader implications for peer education. DESIGN: Participatory action research employing mixed methods of data collection. PARTICIPANTS: Twenty-four older volunteers and eight health and social care staff. DATA COLLECTION METHODS: Evaluative data were gathered from information provided during and at the end of training, a follow-up survey 4 months post-training; interviews and focus groups 6 and 12 months post-training. FINDINGS: Volunteers' personal aims ranged from working within their communities to using what they had learnt within their own families. The personal impact of peer education was considerable. Two-thirds of volunteers reported community peer education activities 1 year after the training. Those who identified strongly with a community group had the most success. CONCLUSION: We reflect on the extent to which the programme aided the development of 'critical consciousness' among the volunteers: a key factor in successful peer education programmes. More research is needed about the impact on uptake of ACP in communities.

'Out of the frying pan into the fire': a qualitative study of the impact on masculinity for men living with advanced prostate cancer.

Background: Studies have highlighted how advanced prostate cancer causes biographical disruption and presents challenges to masculine identities for men. This article draws on a wider study that focused on the experiences of men living with advanced prostate cancer and their caregivers. Although men's experience of advanced illness is not overlooked in the literature, only a small body of work has taken an in-depth look at men's experiences with advanced prostate cancer and their caregivers in a non-Westernised cultural and social context. Objective: To explore how advanced prostate cancer impacts on men's masculine identity from the perspective of patients and their caregivers. Methods: A qualitative study of men living with advanced prostate cancer (n = 23) and family caregivers (n = 23) in Ghana. We used the Consolidated Criteria for Reporting Qualitative Studies (COREQ) as the reporting guideline. Results: The findings from this study highlight profound challenges for most men to their masculine identities, from both the treatment and the symptoms of advanced prostate cancer within a non-Westernised, patriarchal society. Four main themes were developed. These were the impact on masculinity in terms of: (1) physical changes, (2) sexual ability, (3) socio-economic roles and (4) expressing emotions. Changes in physical appearance, feeling belittled, having no active sexual life and the inability to continue acting as provider and protector of the family made some men describe their situation as one of moving out of the 'frying pan into the fire'. Conclusion: This study revealed the impact of advanced prostate cancer on masculine identity. These narratives add a new dimension to what is already known about the impacts on men's masculine identities when dealing with advanced prostate cancer. This knowledge can help improve the care provided to men with advanced prostate cancer with emphasis on the cultures, beliefs and aspirations of these men and their caregivers.

After you: conversations between patients and healthcare professionals in planning for end of life care.

BACKGROUND: This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients' preferences for place of care (and death) were facilitated and documented. METHODS: The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study. RESULTS: Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions. CONCLUSIONS: This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

The impact of Covid-19 pandemic on hospices: A systematic integrated review and synthesis of recommendations for policy and practice.

Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place.The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic. Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searchers for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken. Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services. Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care.

Hospices in the UK faced many challenges during the first two-years of the Covid-19 pandemic. In this time several research studies and reviews took place that provided hospices with recommendations for how to adapt their policies and clinical practices. In this review we identified 12 documents that contained 58 recommendations for hospices' policy and practice. We grouped these recommendations together under ten key themes. We found that there were several recommendations aiming to secure hospice resources to mitigate the short and longer-term impacts upon hospice funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services.

Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life.

BACKGROUND: Over the past ten years there has been an increasing focus on the need for improving the experience of end of life care. A number of policy initiatives have been introduced to develop approaches to discussing and documenting individual preferences for end of life care, in particular preferred place to die. METHODS: The aim was to investigate practice in relation to discussing and documenting end of life care and preferred place to die in the last 4 weeks of life with patients and their families. The study utilised an audit of 65 case notes, alongside four group interviews with a mix of health care professionals involved in palliative care provision. RESULTS: While there was evidence that discussions relating to end of life care and preferred place to die had taken place in around half of the audited case notes, there appeared to be a lack of a systematic approach to the recording of discussions with patients or carers about these kind of issues. Health care staff subsequently highlighted that initiating discussions about end of life care and preferences in relation to place of death was challenging and that the recording and tracking of such preferences was problematic. CONCLUSIONS: Further work is required to establish how information may be adequately recorded, revised and transferred across services to ensure that patients' preferences in relation to end of life care and place of death are, as far as possible, achieved.

Development and evaluation of an LGBT+ education programme for palliative care interdisciplinary teams.

BACKGROUND: Despite national policy recommendations to enhance healthcare access for LGBT+ (lesbian, gay, bisexual, transgender, and those who do not identify as cisgender heterosexual) people, education on LGBT+ issues and needs is still lacking in health and social care curricula. Most of the available resources are focused on primary care, mental health, and sexual health, with little consideration to broader LGBT+ health issues and needs. The limited available educational programmes pertaining to LGBT+ individuals outside the context of sexual or mental health have mainly focused on cancer care or older adults. AIM: To support palliative care interdisciplinary teams to provide LGBT+ affirmative care for people receiving and needing palliative and end-of-life care. METHODS: A 1½-h workshop was developed and evaluated using Kotter's eight-step process for leading change. Across four hospices, 145 health and social professionals participated in the training. A quasi-experimental non-equivalent groups pre-post-test design was used to measure self-reported levels of knowledge, confidence, and comfort with issues, and needs and terminology related to LGBT+ and palliative care. RESULTS: There was a significant increase in the reported levels of knowledge, confidence, and comfort with issues, needs, and terminology related to LGBT+ and palliative care after attending the training. Most participants reported that they would be interested in further training, that the training is useful for their practice, and that they would recommend it to colleagues. CONCLUSION: The project illustrates the importance of such programmes and recommends that such educational work is situated alongside wider cultural change to embed LGBT+-inclusive approaches within palliative and end-of-life care services.

What Are LGBT+ Inequalities in Health and Social Support-Why Should We Tackle Them?

Health inequalities are differences in health experiences and outcomes which arise through the everyday circumstances of people's lives and the appropriateness of the systems put in place to support them [...].

Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey.

Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/no, multiple-response and open-ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care-costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition.