A realist evaluation of patient involvement in a safer surgery initiative

Background Research has shown that healthcare organisations can cause harm to patients, much of which is avoidable, and there is reliable evidence to suggest that this harm is a widespread and recurring phenomena (Institute of Medicine 1999; Department of Health 2000; Leape et al 2002; de Vries et al 2008; Longtin et al 2009; Jha et al 2010). Encouraging patients to take an active role in their own healthcare was identified in the landmark patient safety publication ‘To Err is Human’ (Institute of Medicine 2000) as a vital factor in the quest to improve patient safety. It has since been contended that if patients were involved in their healthcare they could help to further reduce opportunities for accidents and errors during the course of their care (Vincent and Coulter 2002; Koutantji et al 2005; Weingart et al 2005; Unruh and Pratt 2006; Davis et al 2007). More recently, there has been growing interest in the development and use of interventions to promote and support patients’ roles in securing their own safety in healthcare contexts (Hall et al 2010; Longtin et al 2010; Peat et al 2010; Doherty and Stavropoulou 2012; Vaismoradi et al 2014). Aims The broad aim of this study is to explore the extent to which patients are involved in attempts to improve their own healthcare safety through enrolment in an enhanced recovery after surgery (ERAS) programme. Recognising that patient safety is just one aspect of the ERAS programme theory, this research evaluates those elements of the programme that see patients taking a role in their own healthcare safety. This is achieved by considering in realist terms the mechanisms of effect by which patients might contribute to their healthcare safety and investigating the conditions and circumstances (contexts) that are required to enable this involvement. The overall aim of this research is to seek out regularities in the patterns of these contexts and mechanisms which result in patient involvement in patient safety. The emerging theory will explain implementation variations, and the experiences of the programme participants in the different cases will provide an opportunity to make comparisons with initial programme theories, the objective being to better understand when and why patient involvement in patient safety works in an ERAS programme. Methods The underpinning methodological framework for this research is realist evaluation (Pawson and Tilley 1997), which is a technique concerned with exploring the interaction among context, mechanism and outcome, based on the realist principle of generative causation. This study uses an in-depth multiple case study approach, with each of the three surgical units under study purposively selected to represent involvement in the ERAS programme. To capture the complex and dynamic nature of the programme under investigation, the study draws on a wide range of empirical data sources, methods and materials, including ethnographic observations, semi-structured interviews and document analysis. Taking ‘early mobilisation’ as a tracer outcome, the study examines the mechanisms and contexts involved in programme outcomes in relation to patient involvement in patient safety. The first stage of the enquiry involves eliciting and formalising the programme theories relating to patient involvement in patient safety in an ERAS programme which are then articulated in conjectured context-mechanism-outcome configurations (CMO) terms. The next stage involves collecting data that will allow interrogation of these hypotheses, comparing the programme’s intentions with case study data of actual practice that occurred and the views and experiences of key stakeholders, including patients and nursing staff. This is followed by cross case comparisons which attempt to determine how the same mechanisms played out in different contexts. Key findings Overall, the findings show that there are many contextual factors relating to the successful outcomes of the programme theories postulated. The key findings of this study demonstrate that successful patient involvement in patient safety related elements of an ERAS programme requires that: ward staffs are aligned with the programme objectives; that patients’ expectations for their post-operative recovery are managed prior to surgery and the underlying rationale for their care is understood and; in the post-operative period patients’ enrolment in the programme is sustained and reinforced by ward based staff. The study also demonstrates how differences in the implementation of ERAS across the study sites, support for early mobilisation and individual patient differences (for example emotional status and operation type) were consequential for the outcomes of the programme theory. Conclusion This thesis sits at the interface of a number of health policy and quality improvement trends including patient involvement, patient safety, standardisation, patient centred care, co-production and the growing interest in healthcare with the implementation and embedding of interventions. The aspirations of policy and programme documentation to ‘empower’ patients to take a more active role in their care also proved more complex in reality. The study highlights the tensions between achieving a quality standard and patient centred care and how the approach to postoperative care in the three different case study sites shaped nurses’ willingness to adapt the programme and support patient involvement. The main areas for consideration from this study include the importance of the role of healthcare staff in attempts to involve patients in patient safety, along with the tensions between standardisation of care versus the aspirations of providing person-centred, individual care for patients. This is considered in relation to the ongoing standardisation of healthcare through an increasing reliance on protocols and pathways, such as the ERAS programme

A qualitative study of nurse-patient communication and information provision during surgical pre-admission clinics

Background Health-care service users are often being described as ‘co-producers’ with an active role in their care. However, there are challenges associated with this approach, including how standardization affects personalized care, and the ability of patients to retain high volumes of information. Objective Our study explores patient and nursing perspectives of information provision in the pre-admission element of an Enhanced Recovery After Surgery programme, an evidence-based approach implemented to improve the quality of surgical care. Our analysis has been informed by an evidence-based model developed by Grande et al Patient Educ Couns. 2014;95:281. Design/Setting and participants This was a qualitative study including observations of pre-admission clinics and semi-structured interviews across three surgical wards. Patients (n = 21) and registered nurses (n = 21) were purposively selected for interviews. Results Patients welcomed the opportunity for active involvement in their care. However, we also identified informational boundaries and how illness and treatment-related anxieties were barriers to patient engagement with the information provided. Discussion We recommend that to support a patient-centred and individualized approach to patient involvement the ‘information (giving) + activation’ element of Grande et al Patient Educ Couns. 2014;95:281 model be reconfigured to allow for ‘information (giving) + exploration +activation’. Conclusion Nurses need to feel empowered to adopt strategies that allow for different informational needs, rather than adopting a one-size-fits-all paternalistic approach. Patient contribution This study focused on patient involvement and we give thanks to all the patients who took part in interviews and those who allowed us to observe their care

Patients' experiences of cancer immunotherapy with immune checkpoint inhibitors: A systematic review and thematic synthesis

Aim To obtain a deeper understanding of peoples' experiences of cancer treatments with immune checkpoint inhibitors (ICIs). Background ICIs are transforming survival outcomes for many with certain advanced cancers. Given the possibility of unique immune-related adverse events (irAEs), understanding treatment experiences is crucial to identify support needs and provide safe and effective person-centred care. Design A systematic review of qualitative research and thematic synthesis. To report this review, the Preferred Reporting Items for Systematic Analysis and Meta Analysis (PRISMA) checklist and Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidance have been used. Data Sources MEDLINE, EMBASE, PsycINFO, CINAHL and Web of Science databases were searched in January 2022 for eligible studies published in English from database inception. Review Methods Two reviewers independently screened records, identified papers for inclusion and appraised methodological quality using the Critical Appraisal Skills Programme checklist. Themes were developed using thematic synthesis. Results Eighteen papers were included and three analytical themes developed: immune checkpoint inhibitor treatment decision-making; the experience and impact of immune checkpoint inhibitor treatments; and appraising and responding to irAEs. Conclusion The synthesis renders visible individuals' unmet information, psychological and practical support needs. It identifies shortcomings in immune checkpoint inhibitor treatment decision-making processes and highlights the need for healthcare professionals to recognise and sensitively handle individuals' treatment expectations. Individuals' understandings of and responses to irAEs are also illustrated, and attention drawn to patients' concerns about healthcare professionals' checkpoint inhibitor and irAEs knowledge

Exploring cancer rehabilitation services in South Wales: a qualitative understanding from perspectives of people affected by cancer and healthcare professionals

Purpose: Physical and psychological consequences can develop as a result of cancer and its treatment affecting people's quality of life. In Wales, people in deprived areas are also more likely to have comorbidity at cancer diagnosis which will require management. Cancer rehabilitation services, which can consist of physical exercise, psychological support and health education depending on people's needs, have been found to have positive effect on healthrelated quality of life and managing side effects and complex health problems worldwide. However, accessibility and lack of information on existing services can serve as barriers leaving people with unmet rehabilitation needs. In Wales, 41% of people, who have had health and social care needs resulting from cancer, reported that they did not receive care, including physiotherapy when needed. The reason for this lack of support and the value of existing services in Wales have not yet been fully investigated. The aim of this study was to investigate the value, barri ers, and facilitators of two cancer rehabilitation services in South Wales from the perspective of healthcare professionals and people affected by cancer. Methods: Audio recorded, semi-structured, face-to-face interviews were conducted with a purposive sample of healthcare professionals (n=20), including physiotherapists, and people affected by cancer (n=15) at two specialist cancer rehabilitation services in South Wales. Questions were asked about the value, meaning, barriers and facilitators of cancer rehabilitation. Interviews were transcribed verbatim. Thematic analysis based on the method of Braun and Clarke (2006) was used on the anonymised transcripts. Results: People affected by cancer valued the expert knowledge, c are and attention from trained healthcare professionals. Exercise classes were highly regarded among people affected by cancer due to the positive changes they experienced in their physical strength and mental health. Peer support and sharing experiences with other people were also an important factor in rehabilitation. However, both people affected by cancer and healthcare professionals reported system related and personal barriers. Accessibility and understaffing were problems that both participant groups suffered from. Lack of information on available services and personal problems were reported by people affected by cancer, while healthcare professionals mentioned underfunding and cultural problems as barriers specific to them. There was also a lack of consensus among participants on the meaning of rehabilitation, which may also be the cause of some of the barriers. Conclus ion(s): The findings of this study indicate that cancer rehabilitation is highly valued by people affected by cancer. However, these services are not always available for everyone, due to barriers related to the healthcare system and people's own personal problems. Service promotion and education of both people affected by cancer and healthcare professionals can help in overcoming some of the barriers. Implications: Identifying barriers is the f irst step in overcoming them to provide high-quality care for everyone in need. Feedback will be given on the findings to the two specialist cancer rehabilitation services on the value and barriers to care provision. Findings will also be disseminated UK-wide and internationally to inform good practice and help using cancer rehabilitation services to their full potential. Key-Wor ds: Cancer rehabilitation, Qualitative research, Managing needs Funding acknowledgements: The project, which findings I would like to present was funded by Macmillan Cancer Support, Swansea University (No RS16/1700X) and the John and Alice Edwards Studentship Fund at Cardiff University

Qualitative exploration of cancer rehabilitation in South Wales, UK from the perspectives of people affected by cancer and healthcare professionals

Background: Physical and psychological consequences can develop as a result of cancer and its treatment affecting people's lives. Cancer rehabilitation services have been found to have positive effect on quality of life and managing side effects worldwide. However, accessibility and lack of information on services can serve as barriers leaving people with unmet rehabilitation needs. The aim of this study was to investigate the value, barriers, and facilitators of two cancer rehabilitation services in South Wales from the perspective of healthcare professionals and people affected by cancer. Methods: Audio recorded, semi-structured, face-to-face interviews were conducted with a purposive sample of healthcare professionals (n=20), and people affected by cancer (n=15) at two specialist cancer rehabilitation services in South Wales. The study was approved by London South – East Research Ethics Committee (17/LO/2123). Written informed consent was obtained from every participant. Both healthcare professionals and people affected by cancer were asked questions about the value, meaning, barriers and facilitators of cancer rehabilitation. Interviews were transcribed verbatim and reflexive thematic analysis (Braun and Clarke 2006) was used to identify themes in the data. Results: People affected by cancer (PABC) valued the expert knowledge, care and attention from healthcare professionals and the peer support during certain rehabilitation interventions. Exercise classes were highly regarded among PABC due to positive changes in their physical strength and mental health. However, accessibility and understaffing were addressed as barriers to service provision by both healthcare professionals and PABC. Lack of information on available services was reported by PABC, while healthcare professionals mentioned underfunding and cultural problems as barriers specific to them. Moreover, there was no consensus among participants on the meaning of rehabilitation, which could explain some of the barriers. Conclusion(s): The findings of this study indicate that cancer rehabilitation is highly valued by people affected by cancer. However, these services are not always available for everyone, due to barriers related to the healthcare system and people's own personal problems. Service promotion and education of both people affected by cancer and healthcare professionals may help in overcoming some of the barriers