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How people die and experience the road to death is important for all concerned ‐ the patient who is dying, the family carers and loved ones they leave behind, and the health and social care practitioners. However, family carers often make great emotional and financial sacrifices and also assume heavy administrative roles to support the care of their loved one. This paper reports on the social interactions between patient, carers and professionals during end of life (EOL) care. The findings are based on a primary care trust (PCT) funded consultation that examined the quality of EOL care services in one London borough. The project made use of ethnographic methods (open‐ended qualitative interviews and observations) with 50 borough residents of which 32 were patients and 18 were carers. The findings will consider in more detail the social relationships between patients, carers and professionals. It is suggested that while there are some encouraging signs of good practice among EOL agencies and professionals, greater care is needed on the part of frontline professionals in their day‐to‐day interaction with patients and carers to ensure a better quality of EOL care.

The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes.

A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts.

Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became “experts by experience” through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes.

The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design.

Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement.

Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers.

Analysis of the role patients and carers in implementation and improvement.

The purpose of this paper is to understand and develop ways to enhance patients’ experiences of preoperative education received prior to surgery for colorectal cancer.

Based in the UK, three-action research cycles were undertaken to evaluate preoperative education, identify changes seen by patients and staff as likely to improve the service and to re-evaluate such changes following implementation. Data in each cycle were collected from: observations of clinic interactions; patient questionnaires; individual semi-structured interviews with multidisciplinary colorectal unit staff; longitudinal semi-structured interviews with patients and carers pre-surgery, two weeks post-surgery and 12 weeks post-surgery; patient and carer focus groups post-surgery; and existing educational material.

In total, 138 participants shared their experiences of either giving or receiving preoperative education. Findings were themed into why patients want preoperative education, and patients’ views of the educational processes.

Patients emphasised the need for educational provision to be fully understandable, comprehensive and client-centred using a range of communication processes. Patients emphasised the need for educational provision to be more fully understandable, comprehensive and client-centred and that important messages should be reinforced using a range of media. At a time of many uncertainties for patients’ lives, such education needed to encompass the experiences patients could expect, delivered by confident healthcare professionals.

Contextualising understanding and facilitating their own actions, enabled patients to regain control in circumstances particularly disruptive of bodily and other life routines. Establishing a sense of control is confirmed as important for patient's wellbeing in preparing for surgery and postoperative rehabilitation.

The purpose of this paper is to describe the use of a common qualitative data set analysed with both a quality improvement tool to facilitate service improvement, and a rigorous research methodology to engage beginning nurse researchers in a mentored project.

A qualitative cohort study of the experience of hospitalisation across six diagnostic groups interrogated data from 104 patient and carer interviews using the Picker Dimensions of Experience and Heideggerian Phenomenology.

The paper reveals that well‐conducted qualitative interviews can provide common ground for service improvement initiatives and rigorous research analysis.

The Picker Dimensions use simple coding methods that push findings towards utility, but at times are overly reductionist and exile any data not related to hospital services. Heideggerian phenomenology is training and resource intensive, but its exploration of the meaning of the illness experience provides a profound backdrop for the subsequent understanding of hospitalisation.

The access that qualitative data provides to the patient and family's perspective is becoming increasingly valued in processes of ongoing quality improvement, clinical redesign and evaluation for hospital accreditation.

The intrinsic rewards of deep qualitative analysis for the staff involved are extraordinary. Clinicians were humbled by new understandings, which surprised them despite their long clinical experience.

While quality improvement processes require training, ethics applications and data collection, the same framework can support rigorous qualitative research through use of the data as “common ground”. The researchers experienced a tension, but eventually, a balance between the strengths and limitations of these combined modes of qualitative inquiry.

To describe the purpose, establishment, work and achievements of the Expert Patients Programme (EPP) of the NHS Modernisation Agency's Clinical Governance Development Programme.

The Expert Patients Programme (EPP) is one initiative of the Clinical Governance Support Team (CGST) which provides support for health professionals in implementation of the NHS Clinical Governance Programme arising out of the early work of the Patient Experience Team (PET). “Expert patients” are those with experience of self‐management of long‐term conditions and the programme centres on developing a model of peer support for patients with similar conditions. The EPP team has built on work at Stanford University in the USA where patients and their carers provide peer advice and support – an initiative termed “lay‐led self‐management”. The EPP team developed a six‐week course facilitated by trained lay people based on the Stanford “Chronic Disease Self Management Course” (CDSMC). This course was incorporated in a pilot study which ended in 2004 and in which the NHS collaborated with accredited voluntary organisations. A total of 98 per cent of Primary Care Centres in the UK took part. The methodology and benefits of the support programme are outlined.

Evaluation by questionnaire confirms data from other countries on showing improvement in patients' conditions and a decrease in their use of health services. Access to the EPP programme is to be widened and will be available throughout the NHS by 2008.

An account of the formation, activities and outcomes to date of the EPP programme are provided.

The purpose of this paper is to present a case study of one element of the integrated work which has taken place in Central Manchester, the development of multi-disciplinary Practice-Integrated Care Teams (PICT). The paper will show how working together has become a practical reality for members of these teams, and is forming the building blocks for further integration across neighbourhoods.

This paper draws on the author’s experience of working in the PICT project from 2012 to 2014. The report will draw on the evaluation work which took place during the project, and will include reflections from others involved in the project and members of the teams.

The integrated care teams which have been developed in Central Manchester have started to make significant changes to the ways that professionals work together, to the experience that patients have and to the costs of urgent care provision. Whilst there is still a long way to go, there has been significant learning from the PICT. This includes improved patient outcomes and experience. There has been an overall reduction in secondary care activity for patients the teams have been working with, with the largest reduction being in emergency admissions. Alongside this, patient feedback has reinforced the value of this personalised approach and increased overall satisfaction with the care and advice received from health and social care professionals and an improved professional experience. Evaluation has demonstrated that amongst professionals involved in the team there is a strong commitment to the principles of integrated care and that the confidence, skills and capacity of the teams have strengthened since this way of working has been introduced. As monitoring of financial impact continues to develop, cost savings from secondary care, particularly around emergency unplanned care, are encouraging.

This paper draws on the recent experience of designing and delivering integrated care across a range of multi-agency, multi-professional partners. The model which has been developed centres around the role of general practice, and has enabled primary care to take a key role in the development of an out-of-hospital integrated care system. This has enabled community professionals such as nurses and social workers to build a much stronger relationship with general practice and enable system linkages which will be essential to the delivery of joined-up health and social care in the future. The project has been accompanied by thorough and ongoing evaluation to support the validity of the learnings which have been reported.

To provide an overview of the change to NHS Clinical Governance Support Team's Board Development Programme.

The background to the programme, the methods adopted by the Board Team and lessons learned are outlined. Commitment and active support at Board and senior levels are known to be essential for organisational change and, in order to help translate aims into strategic priorities and to implement these into improved services, the Clinical Governance Board Support Team was formed in 2000 as part of the overall NHS Clinical Governance Support Team (CGST). Its members provide advice and support to NHS personnel who are involved in improvements to health care services.

The team worked initially with Boards of acute NHS Trusts and later with Primary Care, Ambulance and Mental Health Trusts. Among the lessons learned from their own work and the increasing body of research‐based evidence is the importance of the leadership role of the Board in fostering a positive culture of change, enthusing and empowering staff. Other factors are the effectiveness of communication with external organisations, scrutiny of all points of contact with users of the services and involvement of users – patients and carers – at all stages. The Team evolved during the programme, strengthening its clinical base and introducing patients and carers as associates. In order to meet demand and increase capacity of the Team, learning materials have been developed and these and their experiences widely disseminated. An example of success is demonstrated by the progress made by a pilot cohort of Primary Care Trusts.

This review summarises the aims, objectives and progress of the work of the Board Development Programme.

A recent study on the implementation of telemonitoring has provided an opportunity to explore how telemonitoring could be further developed to enhance better patient, carer and clinician experiences for patients living with chronic disease. The purpose of this paper is to identify the challenges and lessons of the telemonitoring implementation and to identify strategies to inform future implementation.

A qualitative study was conducted with a purposive sample using semi-structured interviews to explore their views about the issues identified in the research aims. Interview themes were informed by current literature and the findings from local studies. Interviews were recorded, transcribed verbatim and analyzed thematically.

A total of 16 participants were interviewed. Overall the recruitment of 56 percent were from identified potential participants. Five core themes were identified, linking different aspects of the telemonitoring implementation: impact of telemonitoring; implementation and management lessons; program risks; program main changes from beginning; and future strategies and recommendations.

This study will inform the wider roll out of telemonitoring across the region with the goal of ensuring future interventions achieve better clinical outcomes, patient, carer experience and deliver better value.

Readmissions to the hospital are expensive and can have negative health consequences for patients. Older adults are at greater risk of readmission. Patient perspectives are valuable in identifying areas for improvement in the transition of care. The purpose of this qualitative study is to increase our understanding of patients’ perspectives on the transition of care from hospital to primary care.

This study employs a qualitative methodology to conduct semi-structured interviews with patients who have been discharged from hospitals in the Ireland East Hospital Group region. Remote interviews were conducted with 18 participants from eight general practices. Transcripts were analysed using thematic analysis as described by Braun and Clarke.

The three main themes identified were communication, outpatient supports and patient education. Gaps in communication do occur, but patients are often too external to comment. Patients benefit from a wide variety of outpatient supports including general practice, family, carers, allied health professionals and voluntary organisations. Access and cost are barriers to these supports. Participants were generally positive towards proposed primary care-based interventions such as follow-up appointments with general practitioners (GPs) and education sessions.

This study highlights a number of areas for improvement in the transition of care in current practice including communication between services and access to outpatient care. It also suggests directions for further research, such as explorations of healthcare provider perspectives and pilot studies of readmission reduction interventions.

This paper presents a personal perspective from a carer about her mother's experience of care in hospital following a stroke.