Fiona Scheibl

Introduction Relational continuity of care is where patients see the same clinicians over time. Evidence suggests relational continuity of care is valued by patients and clinicians and results in better health. While current National Health Service policy aims to maintain relational continuity of care, it has been declining in recent years, which may be linked to the growth in practice size, increased staff turnover, part-time working and the focus on patient access. Our research aims to develop resources to help clinicians measure, manage and improve relational continuity of care. Methods and analysis A mixed-methods approach in UK primary care commencing with two workshops drawing patients, clinicians and researchers together to establish an agreed approach on the measurement of continuity of care. Second, analysis of national data will provide insight into how staff turnover, part time working, practice size and funding per patient affects continuity. Third, case studies in a sample of high-performing practices will document the barriers and facilitators to the establishment and maintenance of continuity of care. Fourth, an economic analysis of resource costs and health outcomes using linked primary and secondary care data will show whether costs influence continuity for different patient groups (by age, sex, deprivation status and chronic disease status). Fifth, we will develop practical guidance for clinicians to improve continuity of care, based on the findings from each stage of the research. Ethics and dissemination The study has approval from HRA Health and Care Research Wales Research Ethics Committee (HCRW). Findings will be disseminated through peer-reviewed publications, participatory workshops, podcasts, clinical networks and academic conferences.

Background: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. Objective: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Methods: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Results: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB’s offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. Conclusions: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. Trial Registration: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555

BACKGROUND Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. OBJECTIVE This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. METHODS Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. RESULTS Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB’s offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. CONCLUSIONS AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. CLINICALTRIAL ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555

Organisational priorities for health care focus on efficiency as the health and care needs of populations increase. But evidence suggests that excessive planning can be counterproductive, leading to resistance from staff and patients, particularly those living with cognitive impairment. The current paper adds to this debate reporting an Institutional Ethnography of staff delivering care for older patients with cognitive impairment on acute orthopaedic wards in three National Health Service hospitals in the United Kingdom. A key problematic identified in this study is the point of disjuncture seen between the actualities of staff experience and intentions of protocols and policies. We identified three forms of disjuncture typified as: ‘disruptions’, where sequenced care was interrupted by patient events; ‘discontinuities’, where divisions in professional culture, space or time interrupted sequenced tasks; and ‘dispersions’, where displaced objects or people interrupted sequenced care flow. Arguably disruption is an integral characteristic of care work; it follows that to enable staff to flourish, organisations need to confer staff the autonomy to address systemic disruptions rather than attempt to eradicate them. Ultimately, organisational representations of ‘good practice’ as readily joined up, impose a care standard ‘stereotype’ that obscures rather than clarifies the interactional problems encountered by staff.

Background: It can be challenging for general practitioners to support their oldest old patients through the complex process of relocation. Objective: To provide a typology of the experiences of moving in very old age that is clinically useful for practitioners navigating very old people’s relocation. Methods: Qualitative analysis of data from a mixed-methods UK population-based longitudinal study, Cambridge City over-75s Cohort (CC75C), from Year 21 follow-up onwards. Interviews with participants aged ≥95 years old and proxy informants (Year 21: 44/48, 92%, subsequent attrition all deaths). Thematic analysis of qualitative data available from 26/32 participants who moved before they died. Results: Individuals who moved voluntarily in with family experienced gratitude, and those who moved into sheltered house or care homes voluntarily had no regrets. One voluntary move into care was experienced with regret, loss and increased isolation as it severed life-long community ties. Regret and loss were key experiences for those making involuntary moves into care, but acceptance, relief and appreciation of increased company were also observed. The key experience of family members was trauma. Establishing connections with people or place ahead of moving, for example through previous respite care, eased moving. A checklist for practitioners based on the resulting typology of relocation is proposed. Conclusions: Most of the sample moved into residential care. This study highlights the importance of connections to locality, people and place along with good family relationships as the key facilitators of a healthy transition into care for the oldest old. The proposed checklist may have clinical utility.

Older people are likely to transition to a new home closer to family who can provide assistance or to long-term residential care as their health declines and their care needs increase. A minority choose to move to “age-friendly” housing before the onset of disability, but the majority prefer to “age in place” and defer moving until health crises compel a transition. Older people living with dementia are likely to move into residential care, but not much is known about the role they play in decision making around these moves. This qualitative study addresses this gap in knowledge by examining how a rare cohort of “older old” people, most with some level of cognitive impairment, were involved in decisions surrounding assistance seeking and moving to a care home. Thematic analysis of qualitative interview data from Cambridge City over-75s Cohort (CC75C) study participants aged 95 years and older, who had moved in later life, and their proxy informants (n = 26). Moves at such an old age were made due to a complexity of push and pull factors which had layered dynamics of decision making. In most cases (n = 22), decision making involved other people with varying degrees of decision ownership. Only four older people, who moved voluntarily, had full ownership of the decision to move. Many relatives reported being traumatized by events leading up to the move. “Older old” people are sometimes unable to make their own decisions about moving due to the urgency of health crisis and cognitive decline. There is a need to support relatives to discuss moving and housing options at timely junctures before health crises intervene in an effort to optimize older people’s participation in decision making.

Background and aim As people live longer, dying in very old age is becoming more common. Palliative care is trying to adapt, from models that evolved predominantly from cancer care origins, to better meet the needs and priorities of frail older people. From one of the longest-running studies of ageing¹ we have already described disability and cognition in the last year of life of a population-representative sample of men and women who died aged ≥85² and their end-of-life place of care transitions,^3,4 showing most died away from home, with markedly higher dependency levels amongst people dying ≥90. From interviews with relatives after the study participants’ deaths, reportedly dying comfortably was associated with avoiding transitions, particularly with staying in care homes that had become home.⁵ Qualitative research in the same study found participants aged ≥95 were willing to discuss their end-of-life care preferences.⁶ We also sought to understand bereaved family members’ perspectives on their ‘older old’ relatives’ deaths. Methods Analysis (framework approach) of n = 295 informant interview responses to an open question ‘If you had to live through the time of […participant’s…] final illness again, would you like anything to have been managed differently?’ regarding n = 290 deceased participants (mean age at death 90.2, SD 5.1 years) in the Cambridge City over-75s Cohort study, UK. Results We will detail our findings that highlighted four key themes: communication (information-sharing, inter-personal/professional understanding), time (responsiveness, constraints), place (staying, moving, continuity) and care (in all settings). Discussion Training and service integration implications for end-of-life care for society’s ‘oldest old’ will be discussed. References Fleming J, Zhao E, O’Connor DW, et al.Cohort profile: the Cambridge City over-75s Cohort (CC75C). I J Epidemiol 2007;36(1):40–46. http://ije.oxfordjournals.org Zhao J, Barclay S, Farquhar M, et al.The “oldest old” in the last year of life: population-based findings from CC75C study participants aged at least 85 at death. J Am Geriatr Soc 2010;58(1):1–11 Fleming J, Zhao J, Farquhar M, Brayne C, Barclay S. Place of death for the ‘oldest old’: ≥85-year-olds in the CC75C population-based cohort. Br J Gen Pract 2010;60(573):171–179 Perrels AJ., Fleming J, Zhao J, et al. Place of death and end-of-life transitions experienced by very old people with differing cognitive status: retrospective analysis of a prospective population-based cohort aged 85 and over. Palliat Med 2014;28(3):220–233 Fleming J, Calloway R, Perrels A, et al. Dying comfortably in very old age with or without dementia – a representative “older old” population study. Palliat Med 2016a;30(4):S36. http://pmj.sagepub.com/content/30/4/S1.full.pdf+html Fleming J, Farquhar M, Brayne C, Barclay S. Death and the oldest old: attitudes and preferences for end-of-life care – qualitative research within a population-based cohort study. PLoS ONE 2016b;11(4):e0150686

Health and social care policy in the UK advocates inter-professional working (IPW) to support older people with complex and multiple needs. Whilst there is a growing understanding of what supports IPW, there is a lack of evidence linking IPW to explicit outcomes for older people living in the community. This review aimed to identify the models of IPW that provide the strongest evidence base for practice with community dwelling older people. We searched electronic databases from 1 January 1990-31 March 2008. In December 2010 we updated the findings from relevant systematic reviews identified since 2008. We selected papers describing interventions that involved IPW for community dwelling older people and randomised controlled trials (RCT) reporting user-relevant outcomes. Included studies were classified by IPW models (Case Management, Collaboration and Integrated Team) and assessed for risk of bias. We conducted a narrative synthesis of the evidence according to the type of care (interventions delivering acute, chronic, palliative and preventive care) identified within each model of IPW. We retrieved 3211 records and included 37 RCTs which were mapped onto the IPW models: Overall, there is weak evidence of effectiveness and cost-effectiveness for IPW, although well-integrated and shared care models improved processes of care and have the potential to reduce hospital or nursing/care home use. Study quality varied considerably and high quality evaluations as well as observational studies are needed to identify the key components of effective IPW in relation to user-defined outcomes. Differences in local contexts raise questions about the applicability of the findings and their implications for practice. We need more information on the outcomes of the process of IPW and evaluations of the effectiveness of different configurations of health and social care professionals for the care of community dwelling older people.

Most services provided by health and social care organisations for older people living at home rely on interprofessional working (IPW). Although there is research investigating what supports and inhibits how professionals work together, less is known about how different service models deliver care to older people and how effectiveness is measured. The aim of this study was to describe how IPW for older people living at home is delivered, enacted and evaluated in England.

Interest in researching flexible working arrangements has been growing as such practices have been heralded as the way to reconcile or balance the increased pressures of work and family life. Relatively little attention has been paid to the experiences of flexible working arrangements in small and medium sized enterprises. We report the findings of empirical work on ten small and medium‐sized enterprises and four larger organizations. The reasons for introducing particular flexible working arrangements in SMEs were explored. Our findings show that business case reasons were used when introducing flexible working arrangements in both SMEs and larger organizations, although in different ways.