Putting the ‘patient’ in patient safety: a qualitative study of consumer experiences

Background Although patient safety has been studied extensively, little research has directly examined patient and family (consumer) perceptions. Evidence suggests that clinicians define safety differently from consumers, e.g. clinicians focus more on outcomes, whereas consumers may focus more on processes. Consumer perceptions of patient safety are important for several reasons. First, health‐care policy leaders have been encouraging patients and families to take a proactive role in ensuring patient safety; therefore, an understanding of how patients define safety is needed. Second, consumer perceptions of safety could influence outcomes such as trust and satisfaction or compliance with treatment protocols. Finally, consumer perspectives could be an additional lens for viewing complex systems and processes for quality improvement efforts. Objectives To qualitatively explore acute care consumer perceptions of patient safety. Design and methods Thirty‐nine individuals with a recent overnight hospital visit participated in one of four group interviews. Analysis followed an interpretive analytical approach. Results Three basic themes were identified: Communication, staffing issues and medication administration. Consumers associated care process problems, such as delays or lack of information, with safety rather than as service quality problems. Participants agreed that patients need family caregivers as advocates. Conclusions Consumers seem acutely aware of care processes they believe pose risks to safety. Perceptual measures of patient safety and quality may help to identify areas where there are higher risks of preventable adverse events.     

A scoping review of personalisation in the UK: approaches to social work and people with learning disabilities

There have been rapid developments in personalisation of health and social care in the UK over the past 5 years to develop a more flexible model of provision based upon greater choice and control for service users. This has been important for people with learning disabilities who are often dependent on others such as social workers to support their autonomy and independence. This article discusses a study carried out to explore the impact of personalisation on people with learning disabilities and the role of social workers to support this. A scoping review of the UK literature from 1996 to 2011 was conducted. It was found that there has not been a significant amount of empirical research in this area. Some studies, such as reports by InControl, have suggested that when implemented well, personalisation can have a positive impact on the lives of people with learning disabilities. Other literature highlighted the limitations and critiques of personalisation. Without the right support to manage budgets and autonomy, people with learning disabilities could be left vulnerable. In respect of the social workers, the finding of the review was that there was a lack of guidance on how to implement personalisation and a perceived threat to their traditional practice role, resulting in barriers to implementation. Although the literature emphasises the need for choice, control and autonomy in personalisation, the conclusion of this study is that more research needs to be carried out into how professional roles fit into and can support this process.     

Understanding the relational aspects of learning with, from, and about the other

Frequently heard among healthcare providers, administrators, students, and educators, especially within the context of interprofessional collaboration, is the phrase: learning with, from, and about the other. Our purpose in writing this article was to explore the relational aspects of interprofessional collaboration and provide a conversational perspective on how this phrase may be co-constructed by members of the interprofessional team, to achieve a contextual understanding for enhanced practice. It is through understanding and analysing the meaning of commonly held words and phrases that we can begin to understand the differences between transactional ways of gaining knowledge and begin to understand how a transformational shift in attitude, identity, and practice can promote learning with, from, and about the other.     

'It's the system working for the system': carers' experiences of learning disability services in Ireland

The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers ( n  = 25) and representatives from national carer organisations ( n  = 6) in Ireland. These were people caring for an adult (18–30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.     

Exploring UK medical and social work students’ legal literacy: comparisons,contrasts and implications

To ensure acceptable practice standards both doctors and social workers should draw on relevant legal rules when reaching professional judgements concerning, for instance, children requiring protection, people with severe mental distress and adults at risk, information sharing, consent to intervention and service user involvement in their care and treatment. Many practitioners use the law to maintain high standards of professionalism. However, research has uncovered limited awareness of legal rules and poor standards of health and social care. Academic benchmarks and practice requirements for health and social care professions centrally position legal knowledge for secure decision‐making. Model curricula exist. However, the outcomes of the taught curriculum on students’ confidence in their legal knowledge and skills have been relatively overlooked. This article introduces the concept of legal literacy, a distillation of knowledge, understanding, skills and values that enables practitioners to connect relevant legal rules with their professional practice, to appreciate the roles and duties of other practitioners and to communicate effectively across organisational boundaries. It presents the outcomes for a 2006–2009 study of 1154 UK medical and 638 social work students of their law learning for practice, response rates of 46% and 68%. Significant differences were found between medical and social work students’ attitudes towards the law, and in their self‐ratings of legal knowledge and skills. Confidence levels were low and anxiety high, especially among medical students, although law teaching had some positive outcomes on knowledge and skill development. Social work and medical students associated different themes with the law, the latter especially foregrounding ethics, negligence and liability, which could affect inter‐professional working. Students are not fully prepared for legally literate practice, with a consequent need to review the time allocated for, and the content of law learning and the subsequent availability of continuing professional development.     

Community nurses and social workers learning together: a report of an interprofessional education initiative in South Wales

Collaboration between different professional groups and agencies is an essential element in the provision of high quality community care for people with complex health and social needs. There are, however, a number of barriers to effective interprofessional working. These include: the differing structures and operational philosophies of organizations; the differing languages and values of professional groups; professional and agency rivalries; and the fact that professional groups are, still, largely educated and trained in isolation. Interprofessional learning has been advocated as a possible solution to some of these problems. In this paper the rationale, planning, delivery and evaluation of one interprofessional education initiative are presented. Twelve months of planning between a team of three university teachers working in South Wales, United Kingdom, led to a combined group of community nursing and social work students following post-qualifying courses at undergraduate diploma and first degree level participating in two shared learning sessions. Using an interactive approach the student group explored, first, professional roles and responsibilities and secondly, engaged in group work focused on the discussion of case studies. Student evaluation of the sessions indicated an overwhelming appreciation of the importance of interprofessional education in unidisciplinary education programmes.     

Learning from lives: a model for health and social care education in the wider community context

OBJECTIVES: To develop and evaluate a model for medical education which draws upon the whole frontline workforce in primary care and which enables medical students to develop skills and competencies in patient-centred teamworking across organisational boundaries. METHODS: Over a period of 3 years, 517 undergraduate medical students undertook a 4-week community hospital-based attachment developed in partnership with frontline staff. Pre- and post-course questionnaires and qualitative evaluation were sought from students, patients, tutors and frontline staff. RESULTS: The performance of students in assessment was very good. Before receiving the assessment results, students perceived a high degree of achievement of the specified learning outcomes and reported significant changes in attitude. Qualitative comments were overwhelmingly positive, with clear indications that students appreciated the unique learning opportunities available in this model. Patients were very positive about continuing involvement and valued the opportunity to influence future doctors. Staff were enthusiastic and committed despite competing service pressures. CONCLUSIONS: We have successfully developed a partnership model of community-based education and shown that it leads to significant changes in attitude in students and enables them to learn in an active, patient-focused way about the complexities of delivery of care outside the secondary care environment. We have identified the key requirements for implementation of the model in other centres.     

‘What works here doesn’t work there’: The significance of local context for a sustainable and replicable asset‐based community intervention aimed at promoting social interaction in later life

Interventions that harness local assets to benefit a community are increasingly being promoted to improve health and well‐being. In practice, we know little about how local contexts or reliance on local resources affect the sustainability and scalability of asset‐based community developments. This qualitative case study documents the development and implementation of a novel asset‐based community development project. Based in a large mainly rural county in North East England with relatively high levels of socioeconomic deprivation, the project aimed to prevent social isolation among older people, using a range of food‐related activities. Twenty‐one semi‐structured interviews were conducted with service users, volunteers, project partners, project development workers and senior staff. Interviews explored the project's design and implementation process, outcomes for participants and the wider community, and project sustainability and scalability. Thematic analysis of the data identified four factors likely to be important for creating sustainable and replicable asset‐based community projects. These factors are (a) recognising and harnessing assets among local people who may be otherwise marginalised due to age, geographical isolation and/or socioeconomic deprivation; (b) identifying assets that can be provided by local businesses; (c) genuine project co‐production to develop activities that meet local needs and inspire enthusiasm among all stakeholders; and (d) ongoing organisational support to meet the challenges to sustainability that exist in socioeconomically deprived areas. We conclude that successful asset‐based community projects require extensive community input and learning captured from existing programmes can facilitate the replicability of programmes in other community contexts.     

Making choices about medical interventions: the experience of disabled young people with degenerative conditions

Background Current western policy, including the UK, advocates choice for service users and their families, taking greater control and being more involved in decision making. However, children’s role in health decision making, especially from their own perspective, has received less research attention compared to doctors and parents’ perspectives. Objective To explore the perspective and experiences of disabled young people with degenerative conditions as they face significant medical interventions and engage in decision‐making processes. Design and methods Findings from a longitudinal qualitative study of 10 young people (13–22 years) with degenerative conditions are reported. Individual semi‐structured interviews were conducted with participants over 3 years (2007–2010); the paper reports data from all three interview rounds. Interviews focused on medical intervention choices the young people identified as significant. Results Although the young people in this study felt involved in the medical intervention choices discussed, findings demonstrate a complex and diverse picture of decision making. Results highlighted different decisional roles adopted by the young people, the importance of information heuristics and working with other people whilst engaging in complex processes weighing up different decisional factors. Discussion Young people’s experiences demonstrate the importance of moving beyond viewing health choices as technical or rational decisions. How each young person framed their decision was important. Recognizing this diversity and the importance of emerging themes, such as living a normal life, independence, fear of decisions viewed as ‘irreversible’ and the role of parents and peers in decision making highlights that, there are clear practice implications including, active practitioner listening, sensitivity and continued holistic family working.     

Characteristics of staffed community housing services for people with learning disabilities: a stratified random sample of statutory, voluntary and private agency provision

Within the staffed housing model relatively little is known about the characteristics of different types of provider agency. Data on size, homeliness and physical integration of settings, organisational culture, working methods, staffing levels and resident characteristics, were collected on a stratified random sample of provision in South-West England and Wales. Provider agencies did not differ significantly on three of the four variables relating to residents' characteristics. Nor did they differ in terms of the homeliness or physical integration of settings. However, there were significant differences between providers on the important variables of working methods and staffing levels. Resident ability correlated with staffing levels and organisational culture, but not with staff working methods. The results and their implications are discussed in the context of other research which has used the same measures.     

A step in the right direction: people with learning difficulties moving into the community

It is more than a decade since the government announced that Regional Health Authorities (RHAs) should close their long-stay mental handicap hospitals. The North West Regional Health Authority's (NWRHA) commitment to the resettlement of people with learning difficulties into ordinary housing in the community pre-dated the government's cost-driven initiative. In 1982 the Region published A Model District Service, a strategy document supported by both the District Health Authorities (DHAs) and the local social services departments, in which it set out a user-centred philosophy for community services for people with learning difficulties. This paper is based on an evaluation of the impact of that strategy, the central part of which was an examination of the experiences of 102 people who moved out of three large mental handicap hospitals between March 1990 and March 1991. The research team's primary concern was to obtain information from the people with learning difficulties who had moved into the community. Unstructured interviews were conducted with those with an adequate level of communication, photographs were used to assist those with very limited communication; Observations were made over a period of time of those without any communication skills at all. Interviews were also conducted with the formal care worker in the community and, where there was one, a relative who had meaningful contact with their learning disabled relative. The research found that the move into the community offered the people concerned a much improved quality of life, with greater independence and choice in everyday living. However, there is a need to build on this so that people's life experiences are not merely better than those offered by the already discredited institutions, but so that they can become fully integrated and respected members of society.     

Older people receiving family‐based support in the community: a survey of quality of life among users of ‘Shared Lives’ in England

Shared Lives (adult placement) is a model of community‐based support where an adult who needs support and/or accommodation moves into or regularly visits the home of an approved Shared Lives carer, after they have been matched for compatibility. It is an established but small service which has been used mainly by people with learning disabilities but which has the potential to offer an alternative to traditional services for some older people. However, there is little research on the outcomes for older users of Shared Lives. This paper presents findings from a survey of 150 older people using Shared Lives support across 10 Shared Lives schemes in England, which took place between June 2013 and January 2014. The aim was to identify outcomes for older users of Shared Lives and compare these to outcomes for older users of other social care services. In the absence of an ideal study design involving randomised allocation, statistical matching was used to generate a comparison group from the Adult Social Care Survey from 2011/12, with 121 cases matched to 121 Shared Lives cases. The main outcome measures were Social Care‐Related Quality of Life (measured by the ASCOT) and overall quality of life. Findings indicated that Shared Lives can deliver good outcomes for older people, particularly for overall quality of life. In comparison to the matched group of older people using other forms of support, there was some evidence that Shared Lives may deliver better outcomes in some aspects of quality of life. Limitations to the research mean, however, that more work is needed to fully understand the role Shared Lives could play in supporting older people.