Experiences of hospital care for people with multiple long-term conditions: a scoping review of qualitative research.

BACKGROUND: Multiple long-term conditions-the co-existence of two or more chronic health conditions in an individual-present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals. METHODS: We undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings. RESULTS: Of 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care. CONCLUSIONS: Qualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care.

Healthcare resource use and costs for people with type 2 diabetes mellitus with and without severe mental illness in England: longitudinal matched-cohort study using the Clinical Practice Research Datalink.

BACKGROUND: Approximately 60 000 people in England have coexisting type 2 diabetes mellitus (T2DM) and severe mental illness (SMI). They are more likely to have poorer health outcomes and require more complex care pathways compared with those with T2DM alone. Despite increasing prevalence, little is known about the healthcare resource use and costs for people with both conditions. AIMS: To assess the impact of SMI on healthcare resource use and service costs for adults with T2DM, and explore the predictors of healthcare costs and lifetime costs for people with both conditions. METHOD: This was a matched-cohort study using data from the Clinical Practice Research Datalink linked to Hospital Episode Statistics for 1620 people with comorbid SMI and T2DM and 4763 people with T2DM alone. Generalised linear models and the Bang and Tsiatis method were used to explore cost predictors and mean lifetime costs respectively. RESULTS: There were higher average annual costs for people with T2DM and SMI (£1930 higher) than people with T2DM alone, driven primarily by mental health and non-mental health-related hospital admissions. Key predictors of higher total costs were older age, comorbid hypertension, use of antidepressants, use of first-generation antipsychotics, and increased duration of living with both conditions. Expected lifetime costs were approximately £35 000 per person with both SMI and T2DM. Extrapolating nationally, this would generate total annual costs to the National Health Service of around £250 m per year. CONCLUSIONS: Our estimates of resource use and costs for people with both T2DM and SMI will aid policymakers and commissioners in service planning and resource allocation.

Living with diabetes alongside a severe mental illness: A qualitative exploration with people with severe mental illness, family members and healthcare staff.

AIMS: Diabetes is two to three times more prevalent in people with severe mental illness, yet little is known about the challenges of managing both conditions from the perspectives of people living with the co-morbidity, their family members or healthcare staff. Our aim was to understand these challenges and to explore the circumstances that influence access to and receipt of diabetes care for people with severe mental illness. METHODS: Framework analysis of qualitative semi-structured interviews with people with severe mental illness and diabetes, family members, and staff from UK primary care, mental health and diabetes services, selected using a maximum variation sampling strategy between April and December 2018. RESULTS: In all, 39 adults with severe mental illness and diabetes (3 with type 1 diabetes and 36 with type 2 diabetes), nine family members and 30 healthcare staff participated. Five themes were identified: (a) Severe mental illness governs everyday life including diabetes management; (b) mood influences capacity and motivation for diabetes self-management; (c) cumulative burden of managing multiple physical conditions; (d) interacting conditions and overlapping symptoms and (e) support for everyday challenges. People living with the co-morbidity and their family members emphasised the importance of receiving support for the everyday challenges that impact diabetes management, and identified barriers to accessing this from healthcare providers. CONCLUSIONS: More intensive support for diabetes management is needed when people's severe mental illness (including symptoms of depression) or physical health deteriorates. Interventions that help people, including healthcare staff, distinguish between symptoms of diabetes and severe mental illness are also needed.

Nursing's professional respect as experienced by hospital and community nurses.

BACKGROUND: There is growing awareness that patient care suffers when nurses are not respected. Therefore, to improve outcomes for patients, it is crucial that nurses operate in a moral work environment that involves both recognition respect, a form of respect that ought to be accorded to every single person, and appraisal respect, a recognition of the relative and contingent value of respect modulated by the relationships of the healthcare professionals in a determined context. Research question/aim: The purpose of this study was to develop better understandings of perceptions of nursing's professional respect in community and hospital settings in England. RESEARCH DESIGN: The research design was qualitative. Focus groups were chosen as the most appropriate method for eliciting discussion about nursing's professional respect. Participants and research context: A total of 62 nurses who had been qualified for at least a year and were working in two localities in England participated in this study. METHODS: Data were collected using 11 focus group sessions. The data were analysed by means of an inductive content analysis, extracting meaning units from the information retrieved and classifying the arising phenomena into conceptually meaningful categories and themes. Ethical considerations: To conduct the research, permission was obtained from the selected universities. RESULTS: Recognition respect of human beings was perceived as ingrained in the innermost part of nurses. Regarding appraisal respect, a great importance was placed on: the interactions among healthcare professionals, the time to build trust in these relationships, the influences of the workplace characteristics and nurses' professional autonomy and decision-making. CONCLUSION: Recognition respect of persons was embedded in the inmost part of nurses as individuals. Concerning appraisal respect, it was thought to be deeply enshrined in the inter- and intra-healthcare professional interactions. The forging of trusting relationships over time was deemed to be strongly associated with good quality interactions with other healthcare professionals.

'Trying to battle a very slow version of the system that exists outside': Experiences of waiting for healthcare in English prisons.

Prison has been described as the ultimate form of time-punishment - a place where time is no longer a commodity for individuals to spend, but is ordered by a system which symbolises its power through the control of segments of people's lives. As such, a prison sentence epitomises the experience of waiting. Yet anticipating release is not the only form of waiting within carceral life; waiting for healthcare in its various forms also shapes people's temporal experience. Drawing on interviews with 21 people who have lived in prison, this article describes how experiences of waiting for healthcare are mediated by expectation or hope, perceptions of the relationship between behaviour and healthcare access, and the consequences of waiting for care. Constraints on the autonomy of people in prison mean that waiting for healthcare differs in important ways from waiting for healthcare in the community, and can be perceived as an additional form of punishment. The experience of waiting for prison healthcare can affect physical and psychological well-being, and can in itself be understood as a pain of imprisonment.

Understanding the organisational influences on the quality of and access to primary care in English prisons: a qualitative interview study.

BACKGROUND: Primary care for routine healthcare conditions is delivered to thousands of people in the English prison estate every day but the prison environment presents unique challenges to the provision of high-quality health care. Little research has focused on the organisational factors that affect quality of and access to prison health care. AIM: To understand key influences on the quality of primary care in prisons. DESIGN AND SETTING: This was a qualitative interview study across the North of England from 2019 to 2021. METHOD: Interviews were undertaken with 43 participants: 21 prison leavers and 22 prison healthcare professionals. Reflexive thematic analysis was undertaken. RESULTS: The overarching organisational issue influencing quality and access was that of chronic understaffing coupled with a workforce in flux and dependence on locum staff. This applied across different prisons, roles, and grades of staff, and was vocally discussed by both patient and staff participants. Intricately related to understaffing (and fuelled by it) was the propensity for a reactive and sometimes crisis-led service to develop that was characterised by continual firefighting. A persistent problem exacerbated by the above issues was unreliable communication about healthcare matters within some prisons, creating frustration. Positive commentary focused on the characteristics and actions of individual healthcare professionals. CONCLUSION: This study highlights understaffing and its consequences as the most significant threat to the quality of and access to prison primary care. Strategies to address health care affecting prison populations urgently need to consider staffing. This issue should receive high-profile and mainstream attention to address health inequalities.

Interventions to improve the implementation of evidence-based healthcare in prisons: a scoping review.

BACKGROUND: There are challenges to delivering high quality primary care within prison settings and well-recognised gaps between evidence and practice. There is a growing body of literature evaluating interventions to implement evidence-based practice in the general population, yet the extent and rigour of such evaluations in incarcerated populations are unknown. We therefore conducted a scoping literature review to identify and describe evaluations of implementation interventions in the prison setting. METHODS: We searched EMBASE, MEDLINE, CINAHL Plus, Scopus, and grey literature up to August 2021, supplemented by hand searching. Search terms included prisons, evidence-based practice, and implementation science with relevant synonyms. Two reviewers independently selected studies for inclusion. Data extraction included study populations, study design, outcomes, and author conclusions. We took a narrative approach to data synthesis. We followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for scoping reviews. RESULTS: Fifteen studies reported in 17 papers comprised one randomised controlled trial, one controlled interrupted time series analysis and 13 uncontrolled before and after studies. Eight studies took place in the US and four in the UK. Ten studies evaluated combined (multifaceted) interventions, typically including education for staff or patients. Interventions most commonly targeted communicable diseases, mental health and screening uptake. Thirteen studies reported adherence to processes of care, mainly testing, prescribing and referrals. Fourteen studies concluded that interventions had positive impacts. CONCLUSIONS: There is a paucity of high-quality evidence to inform strategies to implement evidence-based health care in prisons, and an over-reliance on weak evaluation designs which may over-estimate effectiveness. Whilst most evaluations have focused on recognised priorities for the incarcerated population, relatively little attention has been paid to long-term conditions core to primary care delivery. Initiatives to close the gaps between evidence and practice in prison primary care need a stronger evidence base.

Understanding the impact of Covid-19 on the delivery and receipt of prison healthcare: an international scoping review.

BACKGROUND: People being held in prison are particularly vulnerable to Covid-19 infection, as places of detention are high-risk environments for spread of infection. Due to this risk, many prisons across the globe introduced measures to reduce the risk of Covid-19 transmission. The pandemic changed almost all aspects of prison life, including prison healthcare provision. We undertook a scoping review to understand what is known about the impact of the Covid-19 pandemic on the receipt and delivery of prison healthcare. This scoping review is part of a wider mixed-methods study focusing more specifically on the impact that Covid-19 had on prison healthcare delivery in England. METHODS: We conducted an international scoping review of peer-reviewed articles published between December 2019 and January 2022, across six electronic databases. We also conducted a hand search of key journals and the reference lists of included articles. RESULTS: Twelve articles met our inclusion criteria. The articles focused primarily on prisons in high-income countries and mostly explored the impact that the pandemic had on the provision of drug treatment services. Some aspects of drug treatment services were more impacted than others, with those delivered by external providers and preparations for release particularly hindered. Whilst prison mental health services were purportedly available, there were changes regarding how these were delivered, with group therapies suspended and most consultations taking place using telehealth. The articles reported both digital and non-digital adaptations or innovations to prison healthcare services to ensure continued delivery. Collaboration between different agencies, such as the prison itself, healthcare providers, and non-governmental organisations, was key to facilitating ongoing provision of healthcare to people in prison. CONCLUSIONS: Covid-19 impacted on prison healthcare internationally, but different treatment services were affected in disparate ways, both within and between countries. The published literature concentrates on the impact on drug treatment services. Prison healthcare providers rapidly adapted their processes to attempt to maintain service provision.

The quality of prison primary care: cross-sectional cluster-level analyses of prison healthcare data in the North of England.

Background: Prisoners have significant health needs, are relatively high users of healthcare, and often die prematurely. Strong primary care systems are associated with better population health outcomes. We investigated the quality of primary care delivered to prisoners. Methods: We assessed achievement against 30 quality indicators spanning different domains of care in 13 prisons in the North of England. We conducted repeated cross-sectional analyses of routinely recorded data from electronic health records over 2017-20. Multi-level mixed effects logistic regression models explored associations between indicator achievement and prison and prisoner characteristics. Findings: Achievement varied markedly between indicators, prisons and over time. Achieved processes of care ranged from 1% for annual epilepsy reviews to 94% for blood pressure checks in diabetes. Intermediate outcomes of care ranged from only 0.2% of people with epilepsy being seizure-free in the preceding year to 34% with diabetes having sufficient blood pressure control. Achievement improved over three years for 11 indicators and worsened for six, including declining antipsychotic monitoring and rising opioid prescribing. Achievement varied between prisons, e.g., 1.93-fold for gabapentinoid prescribing without coded neuropathic pain (odds ratio [OR] range 0.67-1.29) and 169-fold for dried blood spot testing (OR range 0.05-8.45). Shorter lengths of stay were frequently associated with lower achievement. Ethnicity was associated with some indicators achievement, although the associations differed (both positive and negative) with indicators. Interpretation: We found substantial scope for improvement and marked variations in quality, which were largely unaltered after adjustment for prison and prisoner characteristics. Funding: National Institute for Health and Care Research Health and Social Care and Delivery Research Programme: 17/05/26.

Quality indicators and performance measures for prison healthcare: a scoping review.

BACKGROUND: Internationally, people in prison should receive a standard of healthcare provision equivalent to people living in the community. Yet efforts to assess the quality of healthcare through the use of quality indicators or performance measures have been much more widely reported in the community than in the prison setting. This review aims to provide an overview of research undertaken to develop quality indicators suitable for prison healthcare. METHODS: An international scoping review of articles published in English was conducted between 2004 and 2021. Searches of six electronic databases (MEDLINE, CINAHL, Scopus, Embase, PsycInfo and Criminal Justice Abstracts) were supplemented with journal searches, author searches and forwards and backwards citation tracking. RESULTS: Twelve articles were included in the review, all of which were from the United States. Quality indicator selection processes varied in rigour, and there was no evidence of patient involvement in consultation activities. Selected indicators predominantly measured healthcare processes rather than health outcomes or healthcare structure. Difficulties identified in developing performance measures for the prison setting included resource constraints, data system functionality, and the comparability of the prison population to the non-incarcerated population. CONCLUSIONS: Selecting performance measures for healthcare that are evidence-based, relevant to the population and feasible requires rigorous and transparent processes. Balanced sets of indicators for prison healthcare need to reflect prison population trends, be operable within data systems and be aligned with equivalence principles. More effort needs to be made to meaningfully engage people with lived experience in stakeholder consultations on prison healthcare quality. Monitoring healthcare structure, processes and outcomes in prison settings will provide evidence to improve care quality with the aim of reducing health inequalities experienced by people living in prison.

Exploring the facilitators, barriers, and strategies for self-management in adults living with severe mental illness, with and without long-term conditions: A qualitative evidence synthesis.

BACKGROUND: People living with severe mental illness (SMI) have a reduced life expectancy by around 15-20 years, in part due to higher rates of long-term conditions (LTCs) such as diabetes and heart disease. Evidence suggests that people with SMI experience difficulties managing their physical health. Little is known, however, about the barriers, facilitators and strategies for self-management of LTCs for people with SMI. AIM: To systematically review and synthesise the qualitative evidence exploring facilitators, barriers and strategies for self-management of physical health in adults with SMI, both with and without long-term conditions. METHODS: CINAHL, Conference Proceedings Citation Index- Science, HMIC, Medline, NICE Evidence and PsycInfo were searched to identify qualitative studies that explored barriers, facilitators and strategies for self-management in adults with SMI (with or without co-morbid LTCs). Articles were screened independently by two independent reviewers. Eligible studies were purposively sampled for synthesis according to the richness and relevance of data, and thematically synthesised. RESULTS: Seventy-four articles met the inclusion criteria for the review; 25 articles, reporting findings from 21 studies, were included in the synthesis. Seven studies focused on co-morbid LTC self-management for people with SMI, with the remaining articles exploring self-management in general. Six analytic themes and 28 sub-themes were identified from the synthesis. The themes included: the burden of SMI; living with co-morbidities; beliefs and attitudes about self-management; support from others for self-management; social and environmental factors; and routine, structure and planning. CONCLUSIONS: The synthesis identified a range of barriers and facilitators to self-management, including the burden of living with SMI, social support, attitudes towards self-management and access to resources. To adequately support people with SMI with co-morbid LTCs, healthcare professionals need to account for how barriers and facilitators to self-management are influenced by SMI, and meet the unique needs of this population.

Impact of severe mental illness on healthcare use and health outcomes for people with type 2 diabetes: a longitudinal observational study in England.

BACKGROUND: People with severe mental illnesses (SMIs) have reduced life expectancy compared with the general population. Diabetes is a contributor to this disparity, with higher prevalence and poorer outcomes in people with SMI. AIM: To determine the impact of SMI on healthcare processes and outcomes for people with type 2 diabetes (T2DM). DESIGN AND SETTING: Retrospective, observational, matched, nested, case-control study conducted in England using patient records from the Clinical Practice Research Datalink, linked to Hospital Episode Statistics. METHOD: A range of healthcare processes (primary care consultations, physical health checks, and metabolic measurements) and outcomes (prevalence and hospitalisation for cardiovascular disease [CVD], and mortality risk) were compared for 2192 people with SMI and T2DM (cases) with 7773 people who had diabetes alone (controls). Sociodemographics, comorbidity, and medication prescription were covariates in regression models. RESULTS: When compared with results for participants with T2DM only, SMI was associated with increased risk of all-cause mortality (hazard ratio [HR] 1.919, 95% confidence interval [CI] = 1.602 to 2.300) and CVD-specific mortality (HR 2.242, 95% CI = 1.547 to 3.250), higher primary care physician consultation rates (incidence rate ratio [IRR] 1.149, 95% CI = 1.111 to 1.188), more-frequent checks of blood pressure (IRR 1.024, 95% CI = 1.003 to 1.046) and cholesterol (IRR 1.038, 95% CI = 1.019 to 1.058), lower prevalence of angina (odds ratio 0.671, 95% CI = 0.450 to 1.001), more emergency admissions for angina (IRR 1.532, 95% CI = 1.069 to 2.195), and fewer elective admissions for ischaemic heart disease (IRR 0.682, 95% CI = 0.508 to 0.915). CONCLUSION: Monitoring of metabolic measurements was comparable for people with T2DM who did, and did not, have SMI. Increased mortality rates observed in people with SMI may be attributable to underdiagnosis of CVD and delays in treatment.

Determinants of Physical Health Self-Management Behaviours in Adults With Serious Mental Illness: A Systematic Review.

Behavioural interventions can support the adoption of healthier lifestyles and improve physical health outcomes, but it is unclear what factors might drive success of such interventions in people with serious mental illness (SMI). We systematically identified and reviewed evidence of the association between determinants of physical health self-management behaviours in adults with SMI. Data about American Association of Diabetes Educator's Self-Care Behaviours (AADE-7) were mapped against the novel Mechanisms of Action (MoA) framework. Twenty-eight studies were included in the review, reporting evidence on 104 determinant-behaviour links. Beliefs about capabilities and beliefs about consequences were the most important determinants of behaviour, especially for being physically active and healthy eating. There was some evidence that emotion and environmental context and resources played a role in determining reducing risks, being active, and taking medications. We found very limited evidence associated with problem solving, and no study assessed links between MoAs and healthy coping. Although the review predominantly identified evidence about associations from cross-sectional studies that lacked validated and objective measures of self-management behaviours, these findings can facilitate the identification of behaviour change techniques with hypothesised links to determinants to support self-management in people with SMI. Systematic Review Registration: PROSPERO, registration CRD42018099553.

Exploring Severe Mental Illness and Diabetes: Protocol for a Longitudinal, Observational, and Qualitative Mixed Methods Study.

BACKGROUND: The average life expectancy for people with a severe mental illness (SMI) such as schizophrenia or bipolar disorder is 15 to 20 years less than that for the population as a whole. Diabetes contributes significantly to this inequality, being 2 to 3 times more prevalent in people with SMI. Various risk factors have been implicated, including side effects of antipsychotic medication and unhealthy lifestyles, which often occur in the context of socioeconomic disadvantage and health care inequality. However, little is known about how these factors may interact to influence the risk of developing diabetes and poor diabetic outcomes, or how the organization and provision of health care may contribute. OBJECTIVE: This study aims to identify the determinants of diabetes and to explore variation in diabetes outcomes for people with SMI. METHODS: This study will employ a concurrent mixed methods design combining the interrogation of electronic primary care health records from the Clinical Practice Research Datalink (CPRD GOLD) with qualitative interviews with adults with SMI and diabetes, their relatives and friends, and health care staff. The study has been funded for 2 years, from September 2017 to September 2019, and data collection has recently ended. RESULTS: CPRD and linked health data will be used to explore the association of sociodemographics, illness, and health care-related factors with both the development and outcomes of type 2 diabetes in people with SMI. Experiences of managing the comorbidity and accessing health care will be explored through qualitative interviews using topic guides informed by evidence synthesis and expert consultation. Findings from both datasets will be merged to develop a more comprehensive understanding of diabetes risks, interventions, and outcomes for people with SMI. Findings will be translated into recommendations for interventions and services using co-design workshops. CONCLUSIONS: Improving diabetes outcomes for people with SMI is a high-priority area nationally and globally. Understanding how risk factors combine to generate high prevalence of diabetes and poor diabetic outcomes for this population is a necessary first step in developing health care interventions to improve outcomes for people with diabetes and SMI. TRIAL REGISTRATION: ClinicalTrials.gov NCT03534921; https://clinicaltrials.gov/ct2/show/NCT03534921.

Using drawings as a reflective tool to enhance communication in dementia care.

Communication skills training can be a valuable means of supporting professional and family carers of people with dementia. Most communication skills training programmes for those caring for people with dementia focus on dementia awareness and the technical aspects of communication, such as the pace and volume of the carer's speech. However, it is also important to examine what is conveyed about a carer's internal experience in their non-verbal interactions with people living with dementia. This article explores how drawings can be used to help carers to reflect on what is communicated and question any hidden assumptions. It discusses three case studies to demonstrate the complex dynamics that may be involved in interactions with people with dementia: the loss of shared memories, facing towards someone with dementia rather than away from them, and talking about issues that may be upsetting. Drawings provide a means for carers to access their unspoken thoughts and emotions, and can help them to improve their understanding of non-verbal interactions with people who have dementia.