Co-producing an online patient public community research hub: a qualitative study exploring the perspectives of national institute for health research (NIHR) research champions in England.

BACKGROUND: Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers' everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes' (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known about how HEIs can best do this. Our aim was to develop a university website for patients and members of the public to learn about ways to get actively involved in research and be able to access the results of health and social care research. METHODS: This project involved working as partners with five National Institute for Health and Care Research (NIHR) Research Champions. NIHR Research Champions are volunteers who raise awareness and share experiences about health and social care research. Content of a prototype Patient Public Community Research Hub website was co-produced with the Research Champions, and then 15 NIHR Research Champions from across England were asked for their views about the website. FINDINGS: The information collected told us that the Patient Public Community Research Hub was viewed as being beneficial for increasing visibility of PPIE opportunities and sharing the findings of studies though needs further work: to make the information more user-friendly; to improve the methods for directing people to the site and to create new ways of connecting with people. It provides a foundation for further co-development and evaluation. A set of recommendations has been developed that may be of benefit to other HEIs and organisations who are committed to working with patients and members of the public.

Sharing the results of health and care research studies with patients and members of the public could be improved. In many cases, patients and members of the public do not receive the results of studies they have taken part in. As well, it should also be easy for patients and members of the public to find out about opportunities to get involved with researchers in the development of their research. Universities have an important role to play in providing opportunities for patients and members of the public to be involved in the development of research studies, as well as sharing the findings of their studies. Creating an online patient public community research hub for this purpose was co-produced with National Institute for Health and Care Research (NIHR) Research Champions. The aims of this research were to find out what research volunteers within the National Institute for Health Research (NIHR), in the UK, would like to find on a university website about health and care research. This research aimed to understand how best to raise awareness about how people can get involved in research. It also aimed to understand how best to share information about research, with patients and members of the public, from a university website. Five NIHR Research Champions from diverse ethnic and cultural backgrounds (including younger and older people) helped to develop a set of webpages on a university website, called the Patient Public Community Research Hub. Once the initial online hub was created, online interviews were held with another 15 NIHR Research Champions. The interviews were to help the researcher to understand what they thought about the Patient Public Community Research Hub. The results from the interviews were analysed and grouped into themes. The themes helped to tell us what NIHR Research Champions felt patients and members of the public would want to see on the Patient Public Community Research Hub and what areas needed improving. A co-produced set of recommendations was created with the NIHR Research Champions who helped to shape the Patient Public Community Research Hub. The recommendations are for researchers, other organisations, or services to use. These recommendations along with the findings may help to improve how information gets shared about the results of research and ways in which patients and members of the public can get involved.

Perceptions, knowledge, and practices of breastfeeding in indigenous regions of Mexico during Covid-19 pandemic.

OBJECTIVE: To explore the perceptions, knowledge, and practices of breastfeeding in the context of Covid-19 of pregnant and postpartum women, midwives, and health providers in an indigenous region of Chiapas, Mexico. MATERIALS AND METHODS: Qualitative thematic analysis study involving semi-structured interviews (n = 46) with pregnant women (n = 19), postpartum women (n = 6), health providers (n = 10, i.e., doctors/nurses), and midwives (n = 11). RESULTS: Among mothers, 47% (n = 11) did not know if Covid-19 is transmitted through breastfeeding. They mentioned that they would stay away from their newborns if infected. Health providers and midwives have not received education or any supporting material on the value of breastfeeding during Covid-19 infection. CONCLUSION: Breastfeeding mothers' promotion and counseling remain poor in indigenous communities and have worsened during the Covid-19 pandemic. Breastfeeding training among health providers and midwives should be provided or strengthened even more in emergency situations.

Perspective: Challenges and Strategies to Reduce the Sodium Content of Foods by the Food Service Industry.

Most Americans have dietary sodium intakes that exceed the recommended limits, which is a risk factor for hypertension and CVD. The share of total food expenditures for foods prepared and consumed away from home (FAFH) is ∼55%. These foods are consumed at various venues, including restaurants, workplaces, schools and universities, military installations, and assisted living/long-term care facilities. The food service industry has dealt with and continues to deal with various challenges in its attempt to reduce the sodium content in the foods that they prepare and sell. Despite these challenges, there have been various successful strategies used to reduce the sodium content in FAFH. This perspective article provides an overview of the challenges and strategies that have been used by the food service industry to reduce sodium in FAFH, as well as future sodium reduction strategies. Because of the widespread consumption of FAFH, implementing such future strategies could have a profound impact on the sodium content of the American diet.

Strengthening the role of the executive nurse director: A qualitative interview study.

AIM: To explore the challenges and opportunities facing executive nurse directors in the UK and identify factors to strengthen their role and support more effective nurse leadership. DESIGN: A qualitative descriptive study using reflexive thematic analysis. METHODS: Semi-structured, telephone interviews were carried out with 15 nurse directors and 9 nominated colleagues. RESULTS: Participants described a uniquely complex role with a broader scope than any other executive board member. Seven themes were identified: preparation for the role, length of time in role, role expectations, managing complexity, status, being political and influencing. Strengthening factors included successful working relationships with other board colleagues, development of political skills and personal status, coaching and mentoring, working within a supportive team culture and having strong professional networks. CONCLUSION: Executive nurse leaders are key to the transmission of nursing values and the delivery of safety and quality in healthcare settings. To strengthen this role, the limiting factors and the recommended shared learning identified here should be recognized and addressed at an individual, organizational and professional level. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Given the pressure on all health systems to retain nurses, the role of executive nurse leaders needs to be seen as an important source of professional leadership and their value in actioning health policy into practice recognized. IMPACT: New insights have been provided into the executive nurse director role across the UK. Findings have demonstrated challenges and opportunities to strengthen the executive nurse director role. These include recognition of the need for support, preparation, networking and more realistic expectations of this unique nursing role. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution.

Mobilizing physiotherapy knowledge: Understanding the best evidence and barriers to implementation of hydrotherapy for musculoskeletal disease.

OBJECTIVES: To explore two linked strategies to highlight the best current available evidence for hydrotherapy and to explore the barriers and enablers to mobilizing this evidence into practice. METHOD: Phase 1: The best published evidence for hydrotherapy was collated using a Critically Appraised Topic (CAT) methodology. The focus was the best available research evidence for hydrotherapy in musculoskeletal conditions (i.e. osteoarthritis (OA), juvenile idiopathic arthritis (JIA), rheumatoid arthritis (RA), ankylosing spondylitis (AS), and low back pain (LBP)). Once evaluated for quality, a summary of the evidence was produced in a Clinical Bottom Line (CBL). Phase 2: A Focus Group explored the: CBL, the barriers and facilitators of embedding the best evidence for hydrotherapy into practice. RESULTS: Phase 1: The CAT identified seven studies that indicated hydrotherapy had beneficial, although short term, effects for common musculoskeletal conditions. Phase 2: Six participants from primary, secondary care, private practice, and education discussed the evidence identified. They highlighted issues such as: understanding the value of hydrotherapy, an overuse of quantitative methodologies and the quality of existing research as being barriers to this knowledge being actively mobilized into clinical care. CONCLUSIONS: These two linked enquiries (CAT and Focus Group) identified the best evidence and the basis for discussion to explore barriers and facilitators of evidence use in practice. This gave an understanding of the reasons for the research to practice gap and thereby allows planning of knowledge mobilization strategies to reduce this.

It's ok to be different: Supporting black and minority ethnic nurses and midwives in their professional development in the UK.

BACKGROUND: A significant proportion of the United Kingdom's (UK's) healthcare workforce comprises people from Black and Minority Ethnic (BME) backgrounds. Evidence shows that this population is under-represented at senior management levels. A collaborative leadership development initiative for BME nurses and midwives, by involving their line managers and mentors, was designed and implemented in a Scottish Health Board. AIM: This paper affirms the importance of a collaborative initiative that is targeted to support BME nurses and midwives for leadership development and career progression, and the promotion of an inclusive organisational culture to improve team work, and service standards. METHOD: This initiative adopted an Action Research approach. The programme began with collectively exploring participants' understanding of BME workforce development challenges, then planning and delivering a targeted leadership development training, and then evaluating it, in a cyclical way. FINDINGS: With support from the project facilitators, line managers and mentors, a significant number of BME participants have gone on to achieve career progression. Participating line-managers and mentors have gained an in-depth and nuance understanding of workforce diversity, individuals' potentials, unconscious biases, and the importance of an inclusive organisational culture. All participants reported that they have learned to become more reflective in their professional practice, and more able to explore, embrace, and promote inclusive workplace culture. BME participants reported feeling that they were valued members of staff, and that this had led to a positive impact on team work and better patientcare outcome. CONCLUSION: The project has opened a new window into the world of the BME workforce. Findings highlight the value of a diverse workforce, and of an inclusive organisational culture being crucial for effective team work, and of overall benefit to workforce management. Finally, a collaborative initiative like this can successfully improve team work to deliver better patient care.

Working as frontline health facilitators, service providers, program supporters, and social health activists in Indian hilly terrain areas: A qualitative study of accredited social health activists' experiences before and during the COVID-19 pandemic.

Background: Community health workers (CHW) contribute to achieving health targets of the Sustainable Development Goals (SDG) and Universal Health Care (UHC) in low- and middle-income countries (LMICs). In India, accredited social health activists (ASHAs) function as health facilitators, service providers, and programme supporters for rural and tribal communities and are at the frontline during the COVID-19 pandemic. We aimed to describe the ASHAs' work roles both before and during the COVID-19 pandemic, explore the tasks ASHAs performed throughout the pandemic, and understand its effects on the evolving role of ASHAs. Methods: We used qualitative data from a pre-COVID-19 study conducted in 2018-2019 including face-to-face interviews with purposively sampled ASHAs and their health care supervisors (n = 18) from rural Maharashtra state (India), and a follow-up study during the COVID-19 pandemic using telephonic interviews with a subset of participants from the pre-COVID-study (n = 8). Data were analysed thematically using MAXQDA v11.00. Results: The primary theme in the pre-COVID-19 study was ASHAs' role as described above, except as social health activists, linking beneficiaries to the local maternal and child health care services, distributing medicines for common illnesses, access to government schemes, and engaging in multiple health surveys. During the pandemic, raising awareness, screening of at-risk populations, arranging referrals, providing treatment and follow-up to COVID-19 patients, and supporting their family members. These activities increased the workload and health risks to ASHAs and their family, causing stress and tension among them. However, they had effectively carried out the new duties. ASHAs have improved their status, earning praise from families, society, and the government. They were honoured with the Global Health Leaders Award at the 75th World Health Assembly. Conclusion: ASHAs' contribution to the health system improved the indicators related to maternal and child health during the pre-COVID-19 pandemic. Additionally, they maintained frontline health care during the COVID-19 pandemic, demonstrating resilience despite the challenges of increased workload and stress. However, the COVID-19 pandemic highlights the need to respond to and understand the implications of ASHAs' evolving roles.

A survey of the training and working arrangements of general practitioners providing asthma and chronic obstructive pulmonary disease care in a rural area of Maharashtra State.

Background: Chronic respiratory diseases (CRD), especially asthma and chronic obstructive pulmonary disease (COPD), are common public health problems resulting in a substantial burden of disease for individuals. There is a need to understand the perceptions and practices of primary care physicians ("general practitioners [GPs]") who provide most of the health care in rural India. We surveyed all private and public practitioners listed as practising in a rural area of Western India with the aim of identifying GPs (GPs: graduates, registered and allowed to practice in India) to understand their training, working arrangements, and asthma/COPD workload. Methodology: We administered a short questionnaire at educational meetings or via e-mail to all private and public practitioners listed as providing community-based services in the Junnar block, Pune district, Maharashtra. The survey asked about qualifications, experience, and working arrangements, and about current asthma and COPD workload. A descriptive analysis was performed. Results: We approached 474 practitioners (434 from private sector and 40 from public sector). Eighty-eight were no longer practising in the study area. The response rate was 330/354 (93.2%) of private and 28/32 (87.5%) of public sector practitioners. We excluded 135 nonrespiratory hospital specialists and 23 private practitioners whose highest qualification was a diploma. Our final sample of 200 GPs (70% males) was 177 from private sector and 23 from public sector. The private GPs had more experience in clinical practice in comparison to public GPs (18.6 vs. 12.8 years). Eighty-four percent of GPs from the private sector only had Ayurveda, Yoga, Naturopathy, Unani, Siddha, and Homoeopathy (AYUSH) qualifications, though >90% provided "modern medicine" services. In the public sector, 43.5% GPs only had AYUSH qualifications, though all provided "modern medicine" services. A minority (9% of private GPs and 16% of public GPs) provided both services. Nearly two-thirds (62%) of private GPs had inpatient facilities compared to only 9% of public sector GPs. In both sectors, more GPs stated that they managed people with asthma than treated COPD (Private: 97% vs. 75%; Public 87% vs. 57%). Conclusion: Many GPs practising "modern medicine" only had qualifications in Ayurveda/Homeopathy and fewer GPs are involved in the management of COPD as compared to asthma. These are important factors that form the context for initiatives seeking to improve the quality of community-based care for people with CRD in Maharashtra state in India.

A two-arm parallel-group individually randomised prison pilot study of a male remand alcohol intervention for self-efficacy enhancement: the APPRAISE study protocol.

INTRODUCTION: The prevalence of at-risk drinking is far higher among those in contact with the criminal justice system (73%) than the general population (35%). However, there is little evidence on the effectiveness of alcohol brief interventions (ABIs) in reducing risky drinking among those in the criminal justice system, including the prison system and, in particular, those on remand. Building on earlier work, A two-arm parallel group individually randomised Prison Pilot study of a male Remand Alcohol Intervention for Self-efficacy Enhancement (APPRAISE) is a pilot study designed to assess the feasibility and acceptability of an ABI, delivered to male prisoners on remand. The findings of APPRAISE should provide the information required to design a future definitive randomised controlled trial (RCT). METHODS AND ANALYSIS: APPRAISE will use mixed methods, with two linked phases, across two prisons in the UK, recruiting 180 adult men on remand: 90 from Scotland and 90 from England. Phase I will involve a two-arm, parallel-group, individually randomised pilot study. The pilot evaluation will provide data on the likely impact of A two-arm parallel group individually randomised Prison Pilot study of a male Remand Alcohol Intervention for Self-efficacy Enhancement (APPRAISE), which will be used to inform a future definitive multicentre RCT. Phase II will be a process evaluation assessing how the ABI has been implemented to explore the change mechanisms underpinning the ABI (figure 1) and to assess the context within which the ABI is delivered. ETHICS AND DISSEMINATION: The APPRAISE protocol has been approved by the East of Scotland Research Ethics Committee (19/ES/0068), National Offender Management System (2019-240), Health Board Research and Development (2019/0268), Scottish Prison Service research and ethics committee, and by the University of Edinburgh's internal ethics department. The findings will be disseminated via peer-reviewed journal publications, presentations at local, national and international conferences, infographics and shared with relevant stakeholders through meetings and events. TRIAL REGISTRATION NUMBER: ISRCTN27417180.

Interplaying role of healthcare activist and homemaker: a mixed-methods exploration of the workload of community health workers (Accredited Social Health Activists) in India.

BACKGROUND: Globally, community health workers (CHWs) are integral contributors to many health systems. In India, Accredited Social Health Activists (ASHAs) have been deployed since 2005. Engaged in multiple health care activities, they are a key link between the health system and population. ASHAs are expected to participate in new health programmes prompting interest in their current workload from the perspective of the health system, community and their family. METHODS: This mixed-methods design study was conducted in rural and tribal Primary Health Centers (PHCs), in Pune district, Western Maharashtra, India. All ASHAs affiliated with these PHCs were invited to participate in the quantitative study, those agreeing to contribute in-depth interviews (IDI) were enrolled in an additional qualitative study. Key informants' interviews were conducted with the Auxiliary Nurse Midwife (ANM), Block Facilitators (BFF) and Medical Officers (MO) of the same PHCs. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. RESULTS: We recruited 67 ASHAs from the two PHCs. ASHAs worked up to 20 h/week in their village of residence, serving populations of approximately 800-1200, embracing an increasing range of activities, despite a workload that contributed to feelings of being rushed and tiredness. They juggled household work, other paid jobs and their ASHA activities. Practical problems with travel added to time involved, especially in tribal areas where transport is lacking. Their sense of benefiting the community coupled with respect and recognition gained in village brought happiness and job satisfaction. They were willing to take on new tasks. ASHAs perceived themselves as 'voluntary community health workers' rather than as 'health activists". CONCLUSIONS: ASHAs were struggling to balance their significant ASHA work and domestic tasks. They were proud of their role as CHWs and willing to take on new activities. Strategies to recruit, train, skills enhancement, incentivise, and retain ASHAs, need to be prioritised. Evolving attitudes to the advantages/disadvantages of current voluntary status and role of ASHAs need to be understood and addressed if ASHAs are to be remain a key component in achieving universal health coverage in India.

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

Incidence, nature and causes of avoidable significant harm in primary care in England: retrospective case note review.

OBJECTIVE: To estimate the incidence of avoidable significant harm in primary care in England; describe and classify the associated patient safety incidents and generate suggestions to mitigate risks of ameliorable factors contributing to the incidents. DESIGN: Retrospective case note review. Patients with significant health problems were identified and clinical judgements were made on avoidability and severity of harm. Factors contributing to avoidable harm were identified and recorded. SETTING: Primary care. PARTICIPANTS: Thirteen general practitioners (GPs) undertook a retrospective case note review of a sample of 14 407 primary care patients registered with 12 randomly selected general practices from three regions in England (total list size: 92 255 patients). MAIN OUTCOME MEASURES: The incidence of significant harm considered at least 'probably avoidable' and the nature of the safety incidents. RESULTS: The rate of significant harm considered at least probably avoidable was 35.6 (95% CI 23.3 to 48.0) per 100 000 patient-years (57.9, 95% CI 42.2 to 73.7, per 100 000 based on a sensitivity analysis). Overall, 74 cases of avoidable harm were detected, involving 72 patients. Three types of incident accounted for more than 90% of the problems: problems with diagnosis accounted for 45/74 (60.8%) primary incidents, followed by medication-related problems (n=19, 25.7%) and delayed referrals (n=8, 10.8%). In 59 (79.7%) cases, the significant harm could have been identified sooner (n=48) or prevented (n=11) if the GP had taken actions aligned with evidence-based guidelines. CONCLUSION: There is likely to be a substantial burden of avoidable significant harm attributable to primary care in England with diagnostic error accounting for most harms. Based on the contributory factors we found, improvements could be made through more effective implementation of existing information technology, enhanced team coordination and communication, and greater personal and informational continuity of care.

Identifying the challenges and opportunities of the executive nurse director role in the UK: a scoping review.

The executive nurse director role is complex and there is significant variation in the expectations and responsibilities placed on it. The main function of the role is to deliver the nursing agenda and ensure that safety and quality remain the focus of the executive board. However, it is unclear what evidence exists regarding the challenges and opportunities experienced by executive nurse directors. This scoping review, undertaken as part of the Stronger Study, explores the literature published from 2009 onwards on the challenges and opportunities affecting executive nurse directors' ability to deliver the nursing agenda in the UK. Findings from the review suggest that the importance attached to the executive nurse director role is not matched by the amount of research available. Strengthening the executive nurse director role requires a stronger evidence base and an awareness of the benefits of the role.

Declining soil transmitted helminth detections in an Australian tropical region.

Soil-transmitted helminths (STHs), are recognised neglected tropical diseases and have been endemic in patients in tropical Northern Australia. We reviewed the temporal trends in detections of STHs and Hymenolepis nana in faecal samples from Northern Territory (NT) Government Health facilities, representing patients with acute illnesses and comorbidities between 2008 and 2018. Ascaris lumbricoides is not detected in patients in the NT. The number of faecal samples examined yearly was relatively constant with a median of 4458 (range 4246-4933). Faecal samples from patients under the age of 5 years declined by 45% over the 11 years of the study. Detections of Trichuris trichiura, Strongyloides spp., and hookworm ova fell significantly by 89% (p<0.001), 71% (p<0.001), and 43% (p<0.01), respectively, over the 11 years. Detections of H. nana declined by 33% absolutely, but not significantly, when assessed relative to the reduction in faecal samples from patients under the age of 5 years. The marked reduction in STH numbers coincided with a 10-fold increase in NT dispensing of ivermectin, predominantly used for scabies control, in widely geographically spaced locations throughout the NT, over the 11 years of the study. Our data support previous findings of the beneficial collateral effects of ivermectin therapy. Ivermectin is not recognised as having anti-cestode activity, hence the continued presence of H. nana endemically in the NT, suggests declines in STHs are not related to other changes in health hardware or existing mass drug administration programs. The reduction in T. trichiura detections may not be explained by this association, as unlike Strongyloides spp., the anti-helminthic effect of ivermectin has been less marked.

Foreign aid, Cashgate and trusting relationships amongst stakeholders: key factors contributing to (mal) functioning of the Malawian health system.

Malawi has a long history of receiving foreign aid, both monetary and technical support, for its health and other services provision. In the past two decades, foreign aid has increased, with the aim of the country being able to achieve its Millennium Development Goals by the end of 2015. It is currently moving towards achieving the sustainable development goals. Despite increased donor support, progress in the Malawian health service has remained very slow. This article discusses how trusting relationships amongst the stakeholders is vital in proper financial management, including of foreign aid and effective functioning of the health system in Malawi. This article is based on a qualitative study, using a range of research approaches: the in-depth case study of foreign aid funded Maternal and Child Health (MCH) projects (n = 4); Key Informant Interviews (n = 20) and reviews of policy documents to explore the issues around foreign aid and MCH services in Malawi. During the study period 2014-16, the country continued to face significant financial and other resource management challenges. The study has identified key factors, notably the issue of financial mismanagement, particularly Cashgate, news of which broke in 2013. This scandal has resulted in a great deal of mistrust amongst key stakeholders in health. The concomitant deterioration of working relationships has had a major impact on the health system resulting in further mal-distribution of resources and programme duplications. After highlighting key issues around foreign aid, Cashgate and trusting relationships amongst stakeholders, this article makes policy suggestions, with the aim of assisting donors and external development partners to better understand Malawian socio-political networks and relationships amongst key stakeholders. This understanding will help all those involved in the effective financial management and dispersal of foreign aid.

A qualitative study of experiences of health and social care in home mechanical ventilation.

AIM: To contribute insight into health and social care integration through an exploration of the care experiences of adults with degenerative neuromuscular conditions who use a mechanical ventilator at home. DESIGN: Descriptive qualitative research. METHODS: Seventeen semi-structured interviews were conducted with patients and family carers living in Scotland during 2015-2016 and thematically analysed. RESULTS: To achieve a satisfying life, home ventilated participants required help from a variety of health and social care services, as well as care from family. Examples of successful care were identified, but there were also serious failures and conflict with services. Identifying how care fails or succeeds for this patient population and their families requires an understanding of the interdependency of health and social care. This was achieved by examining health and social care provision from the experiential perspective of care-users to provide insights into how disconnected provision has an impact on users' lives in numerous, idiosyncratic ways.