Centre for Health Services Studies

Excellence in Health Research


profile image for Professor Patricia Wilson PhD, MSc, BEd (Hons), RN, NDN

Professor Patricia Wilson PhD, MSc, BEd (Hons), RN, NDN

Professor of Primary and Community Care

 

 

I was appointed CHSS Professor of Primary and Community Care in April 2014 to lead the new Kent Academic Primary Care Unit (KAPCU). The unit will play a major role in ensuring that Kent will benefit from primary and community care which is a national example for quality and patient-centred care. Good primary care forms the bedrock of the NHS and leads to better health outcomes. Before joining CHSS I was a Reader in Patient Experience in the Centre for Research in Primary and Community Care at the University of Hertfordshire.

My career began in NHS community nursing - I was attracted by working with patients and families as partners in the community. My particular interest is in long term conditions management and in involving patients, carers and the public in health services at all levels - including a say in NHS structures. During the 1990’s I moved into higher education and was programme lead for the specialist community nursing degree and developed an MSc Advancing Practice in Primary Care.

In 1999 the white paper “Our Healthier Nation – Saving Lives”, first mentioned the concept of “expert patient”. This was a turning point for me, bringing together a long-held professional interest, policy agenda and some personal experience of managing a long term condition. It led to a PhD, programme of research and a series of publications charting the development of chronic disease self-management programmes both in the UK and internationally. This work helped deliver local Expert Patients Programmes, and contributed to national and international work developing self-management programmes for people with learning disabilities, sickle cell anaemia, cancer and other chronic diseases.

Over the past six years my interest in involving people in their care at self-management level has extended to the field of patient and public involvement (PPI) within NHS structures and health research. I have a national and international PPI profile and was part of a group working to establish more regionally focused and synergistic PPI by bringing together component parts of the research infrastructure – CLAHRCS, AHSN, RDS and the research networks. I co-led the PPI research theme within the newly formed CLAHRC East of England. I was a member of the Eastern Academic Health Science Network node board and advised particularly on PPI. I was appointed to the NIHR INVOLVE advisory board and Self-Management UK (formerly the Expert Patients Programme) national advisory panel in 2012, and sit on the Editorial Board of a new journal, Research Involvement and Engagement.

In my previous role I was part of the Primary Care Research Network East of England management group, with specific remit for community services research. In 2014 I was appointed Primary Care Academic Speciality Lead, Division 5, Kent Surrey and Sussex NIHR Clinical Research Network. I also sit on the editorial board of Primary Health Care Research and Development, and was recently appointed to the South East Research for Patient Benefit regional funding committee having previously served on the East of England committee.

In 2015 I was appointed as co-convenor of the International Collaboration for Community Health Nursing Research, and link with a number of international colleagues.

back to top

Also view these in the Kent Academic Repository

Articles
Butler, C., Wilson, P. M., Abrahamson, V., Mikelyte, R., Gage, H., Williams, P., Brigden, C. L., Swash, B., Rees-Roberts, M., Silsbury, G. and others. (2022) 'Optimum models of hospice at home services for end-of-life care in England: a realist-informed mixed-methods evaluation.', NIHR Journals Library. NIHR. doi: 10.3310/MSAY4464.

Abstract | View in KAR | View Full Text

Abstract Background Many people prefer to die at home when the time comes. Hospice at home services aim to support patients to achieve this. A range of hospice at home services exist; some services have been evaluated, but there has been limited evidence synthesis. Objectives The main objective was to find out what models of hospice at home services work best, for whom and in what circumstances. Other objectives supported this aim, including an analysis of the health economic costs of hospice at home models. Design The study was an overarching, non-interventional, realist evaluation comprising three phases. Phase 1 was a survey of hospice at home services. Phase 2 involved 12 case studies, grouped into four models on the basis of size and 24 hours per day, 7 days per week (24/7), operations, from which quantitative and health economics data were gathered. Qualitative interview data from bereaved carers, commissioners and providers were analysed to generate context–mechanism–outcome configurations. Phase 3 comprised stakeholder consensus meetings. Setting Hospice at home services across England. Participants A total of 70 hospice at home managers responded to the survey. A total of 339 patient and family/informal carer dyads were recruited; 85 hospice at home providers and commissioners were interviewed. A total of 88 stakeholders participated in consensus meetings. Main outcome measures The quality of dying and death of patients was assessed by bereaved carers (using the Quality of Dying and Death questionnaire). A patient's use of services was collected using the Ambulatory and Home Care Record. Results Hospice at home services varied; two-thirds were mainly charitably funded, and not all operated 24/7. Most patients (77%) had cancer. Hospice at home services overall provided care that was likely to deliver 'a good death', and 73% of patients died in their preferred place. Six context–mechanism–outcome configurations captured factors relevant to providing optimum hospice at home services: (1) sustainability (of the hospice at home service); (2) volunteers (use of, in the hospice at home service); (3) integration and co-ordination (with the wider health and social care system); (4) marketing and referral (of the hospice at home service); (5) knowledge, skills and ethos (of hospice at home staff); and (6) support directed at the carer at home. Key markers of a good service included staff who had time to care, providing hands-on care; staff whose knowledge and behaviour promoted supportive relationships and confidence through the process of dying; and services attending to the needs of the informal carer. Areas of potential improvement for most hospice at home services were the use of volunteers in hospice at home, and bereavement care. Limitations The study had the following limitations – heterogeneity of hospice at home services, variations in numbers and patient clinical statuses at recruitment, a low Quality of Dying and Death questionnaire response rate, and missing data. Only patients with an informal carer involved on a daily basis were eligible for the study. Conclusions Hospice at home services delivered high-quality care and a 'good death', with the majority of patients dying in their stated preferred place. Hospice at home providers can improve their impact by focusing on the features identified that deliver the best patient outcomes. Commissioners can facilitate patient preference and reduce the number of hospital deaths by working with hospice at home services to secure their financial sustainability and increase the numbers and range of patients admitted to hospice at home services. Future research Future research should explore the use of volunteers in the hospice at home setting and evaluate approaches to bereavement support. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 24. See the NIHR Journals Library website for further project information
Abrahamson, V., Zhang, W., Wilson, P. M., Farr, W., Reddy, V., Parr, J., Peckham, A. and Male, I. (2021) 'A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review', BMJ Open. doi: 10.1136/bmjopen-2021-051241.

Abstract | View in KAR | View Full Text

Objectives: Waiting times in the UK for an autism diagnostic assessment have increased rapidly in the last five years. This review explored research (including 'grey' literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances, to deliver high quality and timely diagnosis. Design: We performed a Rapid Realist Review (RRR) consistent with recognised standards for realist syntheses. We collected 129 grey literature and policy/guidelines and 220 articles from seven databases (Jan 2011-Dec 2019). We developed programme theories of how, why and in what contexts an intervention worked, based on cross-comparison and synthesis of evidence. The focus was on identifying factors that contributed to a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within specific parameters (Autism diagnostic services in Paediatric and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group, including representatives from local parent forums, national advocacy groups and clinicians, was integral to the process. Results: Based on 45 relevant articles, we identified seven programme theories that were integral to the process of diagnostic service delivery. Four were related to the clinical pathway: initial recognition of possible autism; referral and triaging; diagnostic model; and providing feedback to parents. Three programme theories were pertinent to all stages of the referral and diagnostic process: working in partnership with families; inter-agency working; and training, service evaluation and development. Conclusions: This theory informed review of childhood autism diagnostic pathways identified important aspects that may contribute to efficient, high quality and family-friendly service delivery. The programme theories will be further tested through a national survey of current practice and in-depth longitudinal case studies of exemplar services.
Mikelyte, R., Abrahamson, V., Hill, E. and Wilson, P. M. (2020) 'Factors Influencing Trends in Opioid Prescribing for Older People: A Scoping Review', Primary Health Care Research & Development. Cambridge University Press. doi: 10.1017/S1463423620000365.

Abstract | View in KAR | View Full Text

Aim: The review aimed to identify factors influencing opioid prescribing as regular pain-management medication for older people. Background: Chronic pain occurs in 45–85% of older people but appears to be under-recognised and undertreated. However, strong opiate prescribing is more prevalent in older people, increasing at the fastest rate in this age group. Method: This review included all study types, published 1990-2017, which focused on opioid prescribing for pain-management among older adults. Arksey and O'Malley's (2005) framework was used to scope the literature. PubMed, EBSCO Host, the UK Drug Database and Google Scholar were searched. Data extraction, carried out by two researchers, included factors explaining opioid prescribing patterns and prescribing trends. Findings: 613 papers were identified and 53 were included in the final review consisting of 35 research papers, 10 opinion pieces and 8 grey literature sources. Factors associated with prescribing patterns were categorised according to whether they were patient-related, prescriber-driven or system driven. Patient factors included age, gender, race and cognition; prescriber factors included attitudes towards opioids and judgements about 'normal' pain; and policy/system factors related to the changing policy landscape over the last three decades, particularly in the USA. Conclusion: A large number of context-dependent factors appeared to influence opioid prescribing for chronic pain-management in older adults but the findings were inconsistent. There is a gap in the literature relating to the UK healthcare system; the prescriber and the patient perspective; and within the context of multi-morbidity and treatment burden.
Abrahamson, V., Jaswal, S. and Wilson, P. M. (2020) 'An evaluation of the clinical microsystems approach in general practice quality improvement', Primary Health Care Research & Development. Cambridge University Press. doi: 10.1017/S1463423620000158.

Abstract | View in KAR | View Full Text

Background: Changes to the general practice (GP) contract in England (April 2019) introduced a new quality improvement (QI) domain. The clinical microsystems programme is an approach to QI with limited evidence in primary care. Aim: To explore experiences of GP staff participating in a clinical microsystems programme. Design and setting: GPs within one clinical commissioning group (CCG) in South East England. Normalisation process theory informed qualitative approach. Method: Review of all CCG clinical microsystems projects using pre-existing data. The Diffusion of Innovation Cycle was used to inform the sampling frame and GPs were invited to participate in interviews or focus groups. Ten practices participated; 11 coaches and 16 staff were interviewed. Results: The majority of projects were process-driven activities related to dministrative systems. Projects directly related to health outputs were fewer and related to externally imposed targets. Four key elements facilitated practices to engage: feeling in control; receiving enhanced service payment; having a senior staff member championing the approach; and good practice–coach relationship. There appeared to be three key benefits in addition to project-specific ones: improved working relationships between CCG and practice; more cohesive practice team; and time to reflect. Conclusion: Small projects with clear parameters were more successful than larger ones or those spanning organisations. However, there was little evidence suggesting the key benefits were unique attributes of the microsystems approach and sustainability was problematic. Future research should focus on cross-organisational approaches to QI and identify what, if any, added value the approach provides.
Abrahamson, V., Zhang, W., Wilson, P. M., Farr, W. and Male, I. (2020) 'A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review', BMJ Open, pp. 1-8. doi: http://dx.doi.org/10.1136/bmjopen-2020-037846.

Abstract | View in KAR | View Full Text

Introduction The National Health Service (NHS) Long-Term Plan (2019) acknowledges that children and young people with suspected autism wait too long for diagnostic assessment and sets out to reduce waiting times. However, diagnostic pathways vary with limited evidence on what model works best, for whom and in what circumstances. The National Autism Plan for Children (2003) recommended that assessment should be completed within 13 weeks but referral to diagnosis can take as long as 799 days. This Rapid Realist Review (RRR) is the first work package in a national programme of research: a Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD). We explore how particular approaches may deliver high-quality and timely autism diagnostic services for children with possible autism; high quality is defined as compliant with National Institute for Heath and Care Excellence (2011) guidelines, and timely as a pathway lasting no more than one calendar year, based on previous work. Methods and analysis RRR is a well-established approach to synthesising evidence within a compressed timeframe to identify models of service delivery leading to desired outcomes. RRR works backwards from intended outcomes, identified by NICE guidelines and the NHS England Long-Term Plan. The focus is a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within a particular set of parameters (Autism and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group consists of policymakers, content experts and knowledge users with a wide range of experience to supplement, tailor and expedite the process. The RRR is consistent with Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and includes identifying the research question, searching for information, quality appraisal, data extraction, synthesising the evidence, validation of findings with experts and dissemination. Ethics and dissemination Ethical approval not required. Findings will inform the wider RE-ASCeD evaluation and be reported to NHS England.
Barker, R., Wilson, P. M. and Butler, C. (2020) 'Does national policy in England help deliver better and more consistent care for those at the end of life?', Journal of Health Service Research and Policy. Sage. doi: 10.1177/1355819620914939.

Abstract | View in KAR | View Full Text

Objectives: To explore the extent to which national policy in end of life care in England influences and guides local practice, to ensure that care for patients over the age 75 years is of a consistently good quality. Method: This paper reports on phase one of a larger study and focuses its discussion on the high level (macro) determinants emerging from the analysis. Fifteen in-depth interviews were conducted with professionals involved in the development of English policy in end of life care. Results: Factors influencing the quality of end of life care were stratified into three system levels: meso, macro and micro. English national policy was reported to be an important macro-level determinant of effective outcomes and examples were provided to demonstrate how policy was influencing practice. Yet the complexity of the area and the range of interacting contributory factors mean the value of policy alone is hard to assess. At the macro-level concern was voiced around: whether policy was effective in tackling rising inequity; lack of mandatory leverage to exert change relating to end of life outcomes; the impact of ongoing infrastructural change on statutory services; workforce pressures; over-reliance on acute services; and continued abdication of responsibility for end of life care to medical professionals supported by the continued dominance of the medical model of care. Conclusions: The links between the existence of policy at the macro-level of the system, and the effective enactment of good practice remain unclear although strategies are suggested to help achieve greater national consistency in end of life care outcomes. Policymakers must pay attention to the following: controlling the rise in localism and its contribution to regional inequalities; the impact of continuous infrastructural change together with increasing workforce pressures; encouraging broader professional and public responsibility for recognition; and care of those at the end of life.
Hashem, F., Brigden, C. L., Wilson, P. M. and Butler, C. (2020) 'Understanding what works, why and in what circumstances in Hospice at Home Services for End of Life Care: applying a realist logic of analysis to a systematically searched literature review', Palliative Medicine. Sage, pp. 16-31. doi: 10.1177/0269216319867424.

Abstract | View in KAR | View Full Text

Background: We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. Aim: To find out in the existing literature what features of hospice at home models work best, for whom and under what circumstances. Design: A realist logic of analysis was applied to synthesise the evidence focusing on mechanisms by which an intervention worked (or did not work). An initial programme theory was developed using the National Association for Hospice at Home standards, Normalisation Process Theory and through refinement using stakeholder engagement. Data sources: PubMed, Science Direct, AMED, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, SCOPUS, Web of Science, DARE, Google Scholar, NHS Evidence, NIHR CRN portfolio database, NIHR journal library of funded studies, including searches on websites of relevant professional bodies [August 2014, June 2017, June 2019]. Results: Forty-nine papers were reviewed, of which 34 wereincluded contributing evidence to at least one of eight theory areas: marketing and referral, sustainable funding model, service responsiveness and availability, criteria for service admission, knowledge and skills of care providers, integration and co-ordination, anticipatory care, support directed at carers. Conclusions: Our literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, our programme theories can be refined and tested against any new empirical evidence.
Rees-Roberts, M., Williams, P., Hashem, F., Brigden, C. L., Greene, K., Gage, H., Goodwin, M., Silsbury, G., Wee, B., Barclay, S. and others. (2019) 'Hospice at Home services in England: a national survey', BMJ Supportive and Palliative Care. BMJ Publishing Group, pp. 1-7. doi: 10.1136/bmjspcare-2019-001818.

Abstract | View in KAR | View Full Text

OBJECTIVE: Hospice at home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a "good death". A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision. METHODS: Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview. RESULTS: Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.5%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (e.g. district nursing, GP services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical. CONCLUSION: There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.
Wilson, P. M. and Mavhandu-Mudzusi, A. H. (2019) 'Working in partnership with communities to improve health and research outcomes. Comparisons and commonalities between the UK and South Africa', Primary Health Care Research & Development. Cambridge University Press. doi: 10.1017/S1463423619000677.

Abstract | View in KAR | View Full Text

Community and public participation and involvement is an underpinning principle of primary healthcare, an essential component of a social justice orientated approach to healthcare, and a vehicle to improving health outcomes for patients, public and communities. However, influenced by history and context, there are intrinsic issues surrounding power imbalance and other barriers to partnerships between communities, public, policy makers and researchers. It is important to acknowledge these issues, and through doing so share experiences and learn from those working within very different settings. In South Africa, community participation is seen as a route to decolonisation. It is also integral to the core functions of South African Higher Education Institutes, alongside teaching and research. In the UK there has also been a history of participation and involvement as part of a social rights movement, but notably public involvement has become embedded in publicly funded health research as a policy imperative. In this paper we draw on our respective programmes of work in public and community participation and involvement. These include a South African community engagement project to reduce teenage pregnancy and HIV infection working through a partnership between teachers, students and university academics, and a national evaluation in England of public involvement in applied health research. We begin by highlighting the lack of clarity and terms used interchangeably to describe participation, engagement and involvement. Frameworks for partnership working with relevance to South Africa and the UK are then analysed, suggesting key themes of relationships, working together, and evaluation and monitoring. The South African project, and examples of public involvement in English primary and community care research are examined through these themes. We conclude the paper by mapping out common enablers and barriers to partnership working within these very different contexts.
Early, F., Wilson, P. M., Deaton, C., Wellwood, I., Dickerson, T., Ward, J., Jongepier, L., Barlow, R., Singh, S. J., Benson, J. and others. (2019) 'Developing an intervention to increase REferral and uptake TO pulmonary REhabilitation in primary care in patients with chronic obstructive pulmonary disease (the REsTORE study): mixed methods study protocol', BMJ Open. BMJ. doi: 10.1136/bmjopen-2018-024806.

Abstract | View in KAR | View Full Text

Introduction: Chronic obstructive pulmonary disease (COPD) is a progressive lung disease associated with breathlessness, inability to exercise, frequent infections, hospitalisation and reduced quality of life. Pulmonary rehabilitation (PR), providing supervised exercise and education, is an effective and cost-effective treatment for COPD but is significantly underused. Interventions to improve referral and uptake have been tested and some positive results reported. However, interventions are diverse and no clear recommendations for practice can be made. This study aims to understand the challenges to referral and uptake in primary care, where most referrals originate, and to develop a flexible toolkit of resources to support referral and uptake to PR in primary care in the UK. Methods and analysis: This is a mixed methods study informed by normalisation process theory and burden of treatment theory. In the first phase, general practitioners, practice nurses and PR providers will be invited to complete an online survey to inform a broad exploration of the topic areas. In phase 2 interviews and focus groups will be conducted with patients, healthcare professionals (HCP) in primary care, PR providers and commissioners to gain an in-depth understanding of the issues and needs. Toolkit development in phase 3 will draw together the learning from phases 1 and 2 and employ an iterative development process to build the toolkit jointly with patients and HCPs. It will be tested in primary care for usability and acceptability.
Abrahamson, V. and Wilson, P. (2019) 'Positioning the six-month review in the recovery process post-stroke: The ideology of personal responsibility', Health & Social Care in the Community. Wiley, pp. 249-259. doi: 10.1111/hsc.12677.

Abstract | View in KAR | View Full Text

Stroke is the UK's fourth highest cause of death and an estimated 300,000 people in England are living with related disability. This paper explores the six‐month review (6MR), a policy initiative that aimed to ameliorate unmet need. A multiple case study approach underpinned by critical realism was used to elicit the views of patients, carers, providers and commissioners across three sites using interviews, observations and documentation. Forty‐six patients (age range 28–91 years), 30 carers and 28 professionals were interviewed between December 2015 and October 2016. Twenty‐nine reviews were observed. Data was analysed thematically across sites. 6MRs carried out by stroke nurse specialists (SNSs) were found to be more medically orientated than those completed by a Stroke Association (SA) co‐ordinator who focused on social issues. Reviewers regarded reviews primarily as an opportunity to address unmet need and signpost to further services. Patients responded in three different ways: proactive and engaged, reflected an active orientation to recovery and self‐management; proactive and self‐managing on their own terms, encompassed patients who were striving for independence but took their own approach sometimes at odds with that of clinicians; and passive orientation, whereby patients did not engage in rehabilitation or self‐management. Patients identified different priorities to those of reviewers, particularly those with other long‐term conditions and this appeared to contribute to the dissatisfaction that some expressed. In conclusion, there was little evidence that the 6MR played a key role in recovery. Locally defined outcomes for the 6MR reflecting national policy were not substantiated by the findings. Our findings suggest that the 6MR should review therapy goals and facilitate patient‐led goals. Reviewers should be allowed the freedom to individualise the process rather than adhering to a rigid framework dictated by national policy and local protocols.
Hamilton-West, K. E., Bates, A., Hotham, S. and Wilson, P. M. (2019) 'Development of a training programme for primary care mental health staff to support management of depression and anxiety in long-term conditions', Primary Health Care Research & Development. Cambridge University Press. doi: 10.1017/S1463423618000658.

Abstract | View in KAR | View Full Text

Aim: We aimed to develop, deliver and evaluate a brief training programme for primary care mental health staff in NW London focussing on long-term physical health conditions (LTCs). The objective was to improve participants' knowledge, understanding and confidence (self-efficacy) in providing effective support to people with LTCs. The second objective was to develop an online version to be made available more widely. Background: The project was commissioned by NW London Collaboration of Clinical Commissioning Groups as part of a strategy to develop more joined up care and support for people with mental health needs. Training was developed by a team of experts, with input from commissioners, service users, clinicians and service managers. Methods: Training was delivered via two-day interactive workshops providing: (i) key facts (informed by a review of published research and publically available health information); (ii) opportunity to engage with the 'lived experience' of people with LTCs (via videos, role plays, case studies and group discussion); (iii) skills-based training (in specific assessment and intervention methods). Knowledge, understanding and confidence (with respect to supporting people with LTCs) were assessed at the start and end of the training. An online training programme (with embedded evaluation questionnaire) was also developed, covering the same themes as the workshop. Findings: Mental health staff (n=60) reported limited knowledge, understanding and confidence before the workshop, underlining the need for training. Knowledge of LTCs improved significantly following training (P<0.0001), along with awareness of the impact of poor psychological wellbeing on physical health (P<0.05) and the role of psychological therapies in supporting people with LTCs (P<0.0001). Self-efficacy also improved (P<0.001). Online training was accessed by 894 participants in the first six months and 187 provided feedback via the evaluation questionnaire. Responses indicated that participants found the training useful (88%), interesting (91%) and easy to understand (97%).
Abrahamson, V. and Wilson, P. M. (2019) 'How unmet are unmet needs post-stroke? A policy analysis of the six-month review', BMC Health Services Research. Springer. doi: 10.1186/s12913-019-4210-2.

Abstract | View in KAR | View Full Text

Background: Stroke is the fourth largest cause of death in the UK and a leading cause of death and disability worldwide. Policy recommends reviewing patients at six-months post-stroke to identify unmet needs but lacks evidence of effectiveness. This study explored needs identified by patients, how they were addressed by the six-month review (6MR) and whether or not policy aspirations for the review were substantiated by the data. Methods: A multiple case study design underpinned by critical realism. Data sources included interviews with 46 patients and 28 professionals across three sites in the South East Coast of England. Patients' interviews coincided with their reviews of which twenty-nine were observed. Thematic analysis of interviews, observations and policy documents was carried out within and across sites. Results: There were 'hotspots' in the care pathway where patients and carers felt particularly unsupported. Whilst these gaps exacerbated anxiety, they were neither universal nor ameliorated by review. Patients consistently identified unmet needs related to rehabilitation, information/education and support. Stroke nurse specialists focused on investigations, medication and liaising with general practitioners or consultants while the Stroke Association co-ordinator focused on sign-posting to other services and provision of generic information which not all respondents found helpful. The remit of review was more modest than that of policy aspirations. Conclusions: The review rests on two causal assumptions: that identifying unmet need will lead to its amelioration; and that provision of information will lead to behaviour change and self-management. While there was some evidence to support the former, there was almost none for the latter. The 6MR would benefit from a patient-led approach to its timing and format; a consistent and individualised approach to stroke education and self-management that is embedded across the care pathway; and targeting reviews should be considered.
Bunn, F., Goodman, C., Russell, B., Wilson, P., Manthorpe, J., Rait, G., Hodkinson, I. and Durand, M.-A. (2018) 'Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis', BMC Geriatrics. BMC. doi: 10.1186/s12877-018-0853-9.

Abstract | View in KAR | View Full Text

Background: Health care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models. Methods: Iterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n-13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n=11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included. Results: We included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM. Conclusions: To embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.
Butler, C., Brigden, C. L., Gage, H., Williams, P., Holdsworth, L. M., Greene, K., Wee, W., Barclay, S. and Wilson, P. M. (2018) 'Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation', BMJ Open. BMJ. doi: 10.1136/bmjopen-2017-021192.

Abstract | View in KAR | View Full Text

Introduction: Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question. Methods and analysis: This is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops.
Wilson, P., Mathie, E., Poland, F., Keenan, J., Howe, A., Munday, D., Kendall, S., Cowe, M., Staniszewska, S. and Goodman, C. (2018) 'How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation', Journal of Health Services Research and Policy. SAGE, pp. 98-106. doi: 10.1177/1355819617750688.

Abstract | View in KAR | View Full Text

Objectives: To explore how embedded patient and public involvement (PPI) is within mainstream health research following two decades of policy-driven work to underpin health research with PPI in England. Methods: Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled PPI to be embedded as normal practice. Data was collected through a national scoping and survey, and qualitative methods to track PPI processes and impact over time within 22 nationally funded research projects. Results: In research studies that were able to create reciprocal working relationships and to embed PPI this was contingent on: the purpose of PPI being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of PPI; PPI opportunities being provided throughout the research; and ongoing evaluation of PPI. Key contested areas included: whether to measure PPI impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as 'authentically' lay; scaling-up PPI embedded within a research infrastructure rather than risk token presence ; and whether PPI can have a place within basic science. Conclusion: While PPI can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing the moral and methodological imperatives.
Monographs
Wilson, P. M. and Abrahamson, V. (2018) Evaluation of West Kent Clinical Commissioning Group Clinical Microsystems Programme for General Practice. University of Kent.

Abstract | View in KAR | View Full Text

This evaluation was commissioned by West Kent Clinical Commissioning Group (CCG) who have invested in training senior managers in the role of coach to facilitate implementation of the clinical microsystems programme developed by the Dartmouth Institute, USA (Nelson et al., 2008). The approach shows promise in improving quality within the NHS (Williams, Dickinson, Robinson, & Allen, 2009, p126) and accords with new ways of working identified in the General Practice Forward View (NHS England, 2016). To-date, nearly thirty general practices in West Kent have been involved in the programme carrying out a range of quality improvement programmes (Arnold & Kankam, 2017).
Hamilton-West, K. E., Bates, A., Hotham, S. and Wilson, P. M. (2017) Improving competencies of PWPs/counsellors to work with people with long-term conditions: Final Report. University of Kent.

View in KAR | View Full Text

Research reports (external)
Hill, E., Mikelyte, R., Abrahamson, V. and Wilson, P. M. (2018) Exploration of the Factors Influencing Opioid Prescribing as Regular Pain-Management Medication for Older People. CHSS: Canterbury.

View in KAR | View Full Text

Conference or workshop items
Abrahamson, V., Zhang, W., Farr, W., Male, I., Parr, J., Kenny, L., Grahame, V., Allard, A., Reddy, V., Saunders, G. and others. (2021) 'How can we deliver timely and high quality diagnosis for children with possible autism in the UK: a rapid realist review of autism service delivery literature', in. Royal College of Paediatrics and Child Health Conference 2021, BMJ. doi: 10.1136/archdischild-2021-rcpch.97.

Abstract | View in KAR

Background: Referrals and waiting times for diagnostic assessment of possible autism in children have increased substantially within UK NHS recently, delaying opportunities for intervention and frustrating families. Research exploring which service models could improve quality and timeliness of autism assessment is a key NHSE priority. Objectives: Explore evidence from research and grey literature about which autism assessment pathways work well, for whom and under what circumstances, to deliver high quality and timely diagnosis. Inform subsequent stages of our Realist Evaluation/study. Methods: We performed a Rapid Realist Review (RRR), a well-established approach to synthesising evidence to identify service delivery models achieving desired outcomes. RRRs seek to develop programme theories (PTs), or explanations, of how, why and in what contexts an intervention works. The focus was a clearly defined intervention (diagnostic pathway), specific outcomes (high quality and timely) within particular parameters (Autism diagnostic services in UK). This was carried out in five iterative stages. We collected 129 grey literature and policy/guidelines from the background search, and 220 articles from primary search (Jan 2011-Dec 2019; seven databases, terms: autism, diagnostic pathway, model of service provision, assessment process). Following duplicate removal and screening of abstracts, two researchers carried out data extraction by hybrid approach: basic details from each included article (n=79) were recorded in an Excel data extraction form; highly relevant articles (n=45) were coded in NVivo. PTs were developed by cross comparison and synthesis of evidence from the articles and findings were discussed with expert stakeholders. Results: 7 PTs were identified, the first 4 informing stages contributing to effective diagnostic pathways, the remaining 3, overarching principles. Potential facilitative service models were identified. 1. If frontline health/education professionals are confident in recognizing symptoms of autism, understand referral pathways and take parents' concerns seriously, then children and young people (CYP) will be referred appropriately, in a timely manner. 2. If services provide clear guidelines for referrers on what information is needed, time will be saved and fewer CYP will be assessed unnecessarily. 3. If a structured and consistent approach to service delivery is adopted, making best use of available staff and expertise then the number of assessments per individual may be reduced. 4. If feedback takes an assets-based approach and management plans are individualized, then parental expectations will be moderated. 5. If parents have a single point of contact, are provided explanations throughout and included in decision-making then diagnostic pathway may be less stressful. 6. If 'experts' including CYP and parents work together and knowledge generated is embedded into local services, this will build capacity and support service planning. 7. If professionals have access to tailored training appropriate to their role, and services engage in development and evaluation, then there will be a higher degree of consistency. Conclusions: This first theory informed review of childhood autism diagnostic pathways has identified important aspects that may contribute to more efficient, high quality and family friendly service delivery. We will test whether the resulting PTs are met, and how service design could be further enhanced through a national survey of current practice and in depth case study of exemplar services.
Abrahamson, V., Butler, C., Wilson, P. M., Mikelyte, R., Brigden, C. L., Silsbury, G. and Goodwin, M. (2019) 'Optimum Hospice at Home Services for End-of-Life care: realist evaluation and co-production', in. International Conference for Realist Research, Evaluation and Synthesis 2021. Available at: https://www.youtube.com/watch?v=fQX6-ka1VwU.

Abstract | View in KAR | View Full Text

Overview: Hospice at home (H@H) services aim to enable people to have a "good death" at home. While this accords with UK policy, statutory services are ill-equipped to meet this demand and there is limited evidence from the perspective of service users, as participants or co-producers, of what aspects are most helpful. Our evaluation asked what features of H@H models work, for whom, how and under what circumstances? We combined a realist evaluation with co-production embedded throughout: phase 1 - a national survey to map service provision and models of H@H care; phase 2 - qualitative and economic data collection with commissioners, service providers and patient-carer dyads; phase 3 - national consensus workshops with stakeholders. The funding application was developed in partnership with ten public members. Two of these became co-applicants, both former carers with experience of hospice services. Utilising a co-production approach, the lay co-applicants contributed to all stages of the research process and were an integral part of the project team. This paper focuses on their role in qualitative data analysis (phase 2); developing and refining programme theories and testing context-mechanism-outcome (CMO) configurations. Key points: The co-applicants initially participated in clearly delineated tasks such as commenting on patient/carer resources. At the end of phase 1, they requested greater involvement, which translated into participating in data analysis. Additional training in realist philosophy and data analysis was provided. The co-applicants attended team coding meetings. Preparation included listening to and reading carer interviews, and coded according to provisional CMOs. Co-applicants fed back at coding meetings as part of the iterative process of refining CMOs. They provided a fresh perspective on the data, reflecting on the underlying narrative that proved invaluable in helping researchers to step back from the minutiae of coding and consider the carer's perspective. Implications: Public members as an integral part of a realist research team add a different lens to interrogating CMO configurations, enhancing rigour in developing programme theories. While the process evolved overtime, we would recommend early discussions around what activities co-applicants would like to participate in, training requirements, time commitment and emotional demands.
Neden, C. A., Hamilton-West, K. E. and Wilson, P. M. (2019) 'Coping with General Practice: An exploratory study of the working lives of General Practitioners in 2017', in. 48th Annual Scientific Meeting of The Society for Academic Primary Care. doi: 10.37361/asm.2019.1.1.

Abstract | View in KAR | View Full Text

Problem Whilst it is recognised that health policy is changing the shape and direction of primary care, an expert generalist role is still required in the system to help meet the breadth of clinical challenges posed. At the same time, the NHS is finding it difficult to recruit and retain sufficient General Practitioners (GPs) who wish to do patient facing work This was a study of GPs working in England in 2017. It aimed to explore both nature of the demands of their role as well as the support mechanisms available and how these GP s managed the demands of their work. Approach As the researcher is a GP, participants were recruited using a Snowball/ Respondent driven sampling strategy. Data was gathered using a series of semi-structured telephone interviews which were transcribed. Semistructured interviews were chosen to allow the respondents to provide depth of information about attitudes and experiences as well as to permit expression of feelings and opinions.A critical realist approach informed the approach to this study. Framework analysis was used for data management and analysis. A matrix of five overarching themes was identified. Findings Interviews with 12 Drs were completed. This sample included salaried Drs and partners practising across England. Five worked full-time and the others part-time. Their primary medical qualifications had been gained (between 1970 and 2012) in the UK, India, Europe and South Africa, mirroring the range seen in GMC workforce data. The five major themes identified were: Health Policy impacts, Changes in the external environment, Dealing with Complexity, Uncertainty in a changing system, Impact on the individual doctor's stress and coping mechanisms (including moderating and mediating factors). Consequences This group of doctors was acutely aware of the service re-organisation taking place around them. For the majority, promised increased resources had not materialised and workload was rising inexorably.The interview findings are discussed in the context of stress and coping. The final theme operates in a similar fashion to that described in the Job Demands-Resources model (Schaufeli and Bakker).An overarching consideration is 'eudaemonic' well-being, several were experiencing anhedonia and feeling of being 'chronically sub-burnout'. There appeared to be significant deficits in core dimensions of well-being as well as a sense of 'moral distress'. Jameton warns that failure to recognise this or acknowledge these experiences had devastating effects on both the individual and the services they provide. The findings of this study will be used to inform a questionnaire study of stress and coping in a larger sample of GPs in England, considering whether particular characteristics of the doctor or their working environment are related to burnout. These finding may inform workplace changes aimed at ameliorating the current workforce crisis
Brigden, C. L., Goodwin, M., Sisbury, G., Rees-Roberts, M., Butler, C., Greene, K., Hayes, C., Hashem, F., Gage, H., Williams, P. and others. (2018) 'Patient and Public (PPI) Involvement in Hospice research: an example of co-production in action', in. National Association for Hospice at Home Annual Conference 2018.

View in KAR | View Full Text

Hamilton-West, K. E., Bates, A., Hotham, S. and Wilson, P. M. (2018) 'Development and Evaluation of a Long-Term Conditions Training Programme for Primary Care Mental Health Workers', in. European Health Psychology Society Conference.

View in KAR

Abrahamson, V. and Wilson, P. M. (2018) 'Health & Well-being post-stroke: what is the role of the six-month review?', in. International Symposium: Transforming Community and Public Health, Swansea, Wales. Available at: http://www.swansea.ac.uk/humanandhealthsciences/.

View in KAR

Showing 25 of 94 total publications in KAR. [See all in KAR]
Information obtained from the Kent Academic Repository. The University of Kent official repository of academic activity.
More information about the Kent Academic Repository
back to top
back to top

 

Centre for Health Services Studies, University of Kent, Canterbury, Kent, CT2 7NF

Enquiries: +44 (0)1227 824057, follow us on Twitter, or email the Centre for Health Services Studies. Privacy Notice.

Last Updated: 26/10/2020