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.

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.

'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.

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.

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.

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.

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 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.

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.

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.

'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.

What do we know about the impact of the Covid-19 pandemic on hospices? A collaborative multi-stakeholder knowledge synthesis.

Background: Prior to undertaking a study looking at the effects of the COVID-19 pandemic upon lived experiences of hospice services in the West Midlands, we sought to identify the range of issues that hospice service users and providers faced between March 2020 and July 2021, and to provide a report that can be accessed and understood by all interested stakeholders. Methods: We undertook a collaborative multi-stakeholder approach for scoping the range of potential issues and synthesising knowledge. This involved a review of available literature; a focus group with hospice stakeholders; and a collaborative knowledge exchange panel. Results: The literature on the effects of the COVID-19 pandemic on hospices remains limited, but it is developing a picture of a service that has had to rapidly adapt the way it provides care and support to its service users, during a period when it faced many fundamental challenges to established ways of providing these services. Results: The impacts of many of the changes on hospices have not been fully assessed. It is also not known what the effects upon the quality of care and support are for those with life-limiting conditions and those that care for them. We found that the pandemic has presented a new normative and service context in which quality of care and life itself was valued that is, as yet, poorly understood.

Applying a Capabilities Approach to Understanding Older LGBT People's Disclosures of Identity in Community Primary Care.

Internationally, there is increasing recognition that lesbian, gay, bisexual and trans (LGBT) populations experience substantial public health inequalities and require interventions to address these inequalities, yet data on this population is often not routinely collected. This paper considers the case study of the UK, where there are proposals to improve government and health data collection on LGBT populations, but also a degree of apparent uncertainty over the purpose and relevance of information about LGBT status in healthcare. This paper applies a health capabilities framework, arguing that the value of health information about LGBT status should be assessed according to whether it improves LGBT people's capability to achieve good health. We draw upon 36 older LGBT people's qualitative accounts of disclosing LGBT status within UK general practice healthcare. Participants' accounts of the benefits and risks of disclosure could be mapped against multiple domains of capability, including those that closely align with biomedical accounts (e.g., longevity and physical health), but also more holistic considerations (e.g., emotion and affiliation). However, across all domains, individuals tend to assess capabilities at an individual level, with relatively little reference to population-level impact of disclosure. Clearer articulation of the benefits of disclosure and data collection for the collective capabilities of LGBT populations may be a beneficial strategy for improving the quality of information on LGBT populations.

Older LGBT+ health inequalities in the UK: setting a research agenda.

Lesbian, gay, bisexual and trans+ (LGBT+) people report poorer health than the general population and worse experiences of healthcare particularly cancer, palliative/end-of-life, dementia and mental health provision. This is attributable to: (a) social inequalities, including 'minority stress'; (b) associated health-risk behaviours (eg, smoking, excessive drug/alcohol use, obesity); (c) loneliness and isolation, affecting physical/mental health and mortality; (d) anticipated/experienced discrimination and (e) inadequate understandings of needs among healthcare providers. Older LGBT+ people are particularly affected, due to the effects of both cumulative disadvantage and ageing. There is a need for greater and more robust research data to support growing international and national government initiatives aimed at addressing these health inequalities. We identify seven key research strategies: (1) Production of large data sets; (2) Comparative data collection; (3) Addressing diversity and intersectionality among LGBT+ older people; (4) Investigation of healthcare services' capacity to deliver LGBT+ affirmative healthcare and associated education and training needs; (5) Identification of effective health promotion and/or treatment interventions for older LGBT+ people, and subgroups within this umbrella category; (6) Development of an (older) LGBT+ health equity model; (7) Utilisation of social justice concepts to ensure meaningful, change-orientated data production which will inform and support government policy, health promotion and healthcare interventions.

Turning the Co-Production Corner: Methodological Reflections from an Action Research Project to Promote LGBT Inclusion in Care Homes for Older People.

Background: Older lesbian, gay, bisexual and trans (LGBT) residents are often invisible in long-term care settings. This article presents findings from a community-based action research project, which attempted to address this invisibility through co-produced research with LGBT community members. Particular Question: What conditions enable co-produced research to emerge in long-term residential care settings for older people? Aims of Project: To analyse outcomes and challenges of action-oriented, co-produced research in the given context. In particular, we explore how co-production as a collaborative approach to action-orientated research can emerge during the research/fieldwork process; and reflect critically on the ethics and effectiveness of this approach in advancing inclusion in context. METHODS: The project was implemented across six residential care homes in England. Reflections are based on qualitative evaluation data gathered pre- and post-project, which includes 37 interviews with care home staff, managers and community advisors (two of whom are co-authors). Results and Conclusions: We discuss how the co-production turn emerged during research and evaluate how the politics of this approach helped advance inclusion-itself crucial to well-being. We argue for the value of co-produced research in instigating organizational change in older people's care environments and of non-didactic storytelling in LGBT awareness-raising amongst staff.

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.