Carer Involvement Research Articles

Prioritizing problems in and solutions to homecare safety of people with dementia: supporting carers, streamlining care

BackgroundDementia care is predominantly provided by carers in home settings. We aimed to identify the priorities for homecare safety of people with dementia according to dementia health and social care professionals using a novel priority-setting method.MethodsThe project steering group determined the scope, the context and the criteria for prioritization. We then invited 185 North-West London clinicians via an open-ended questionnaire to identify three main problems and solutions relating to homecare safety of people with dementia. 76 clinicians submitted their suggestions which were thematically synthesized into a composite list of 27 distinct problems and 30 solutions. A group of 49 clinicians arbitrarily selected from the initial cohort ranked the composite list of suggestions using predetermined criteria.ResultsInadequate education of carers of people with dementia (both family and professional) is seen as a key problem that needs addressing in addition to challenges of self-neglect, social isolation, medication nonadherence. Seven out of top 10 problems related to patients and/or carers signalling clearly where help and support are needed. The top ranked solutions focused on involvement and education of family carers, their supervision and continuing support. Several suggestions highlighted a need for improvement of recruitment, oversight and working conditions of professional carers and for different home safety-proofing strategies.ConclusionsClinicians identified a range of suggestions for improving homecare safety of people with dementia. Better equipping carers was seen as fundamental for ensuring homecare safety. Many of the identified suggestions are highly challenging and not easily changeable, yet there are also many that are feasible, affordable and could contribute to substantial improvements to dementia homecare safety.

Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice).

Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement - respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.

What difference does it make? Findings of an impact study of service user and carer involvement on social work students’ subsequent practice

This paper reports on a study which followed up a group of social work students to explore whether service user involvement in their education made any difference to their practice and whether there were different models or types of involvement which had a more significant impact than others. The findings showed that the impact was individual to each student. It was often specific encounters or ‘light bulb moments’ which led to increased awareness or insight into their own practice particularly when encountering similar situations or when pressures of practice led to them losing sight of service user perspectives. The paper shares these findings and considers the learning for educators in developing models of involvement which enhance impact on subsequent practice.

Healthcare decision-making: past present and future, in light of a diagnosis of dementia.

End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning. Advance care planning in dementia is less well developed than in some other disease groups such as cancer and, arguably, may be more complex. A person with dementia may lose the capacity to make decisions associated with advance care planning early in the course of the disease, requiring more involvement of family carers. This study explores the 'lived' context to health care decision-making of dyads (the person with dementia and their carer) in respect of past, present and future healthcare decision-making.

Diabetes professional care: ways to improve joint working and individualised patient care

Diabetes professional care: ways to improve joint working and individualised patient care

Involving patients and carers in developing the radiotherapy curriculum: enhancing compassion

AbstractBackground:This article describes a collaborative project that aimed to develop a patient-centred curriculum in radiotherapy. In the wake of the Francis report in 2013 and a call for compassion to be a central tenet of health programmes, the project was a timely opportunity to enhance the radiotherapy curriculum.Methods:Collaboration between university staff and patients and carers using the service improvement model Plan-Do-Study-Act was the method employed for the curriculum project. Two key discussion forums helped shape the curriculum plan, with module and course evaluation continuing to inform developments.Results:The key outcome of the project is that it has shaped the 'care' theme evident in the current undergraduate programme. Co-production methods resulted in the development of a range of shared classroom activities that focus on experiences, care values and communication strategies. The new curriculum has evaluated positively and the impact of learning is demonstrated both in the classroom and clinical setting. The project team have also influenced recruitment processes and patient and carer involvement in programme approval is embedded.Conclusion:Working together, with patients and carers is an ideal method to enhance the curriculum and reflect the requirements in practice of current health and social care professions. Further developments in student assessment are planned.

Creativity in social work education and practice: reflections on a Survivor Arts Project

This article, written by survivor artists, practitioners and academics (each moving between these different identities and associated voices), will explore a creative arts approach to social work (SW) education within the context of service user and carer involvement. In addition to building upon a developing literature base, the writers will draw upon their own experience and the experience of other service user and carer contributors as well as student and practitioner feedback. In doing so, this article will seek to analyse some of the ways the creative arts can be harnessed as a tool for a more radical, creative and critical approach to professional education and how this in turn can help develop more empathic, critically self-reflective and creative (in the broadest sense of the word) practitioners. In critiquing the more traditional service user and carer involvement approach, this article will attempt to show how the more innovative approach of the Survivor Arts Project can move us beyond an arguably more limiting ‘expertise through experience’ model. In outlining an emancipatory model which recognises the relevance of lived experience and places this within the context of survivor movements, focusing also on the skills and insights survivors bring to SW education, this article will detail the ways we can work towards developing a more vibrant and dynamic learning environment which values our life stories and recognises our strengths as well as the many different and overlapping identities which place us along a continuum that connects our lives and informs our practice.

Integrated and patient-centered care for people with multimorbidity: insights from European practices

Introduction: Integrated and patient-centered care is considered an effective response to the needs of people who suffer from multiple chronic conditions. People with multimorbidity often need care from multiple healthcare providers and various disciplines. A better coordination and integration of this care would improve its quality. Additionally, a patient-centered care approach would improve the quality of care for people with multimoribidty. Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. In practice this means that the patients’ personal health goals should be the starting point when deciding on care and treatment options. This is especially important for people who suffer from multiple chronic conditions, because outcomes of disease specific treatments might not always be feasible due to the many health problems. Besides patients’ personal health goals, their preferences for treatment options and their resources should be taken into account when deciding on the type(s) of treatment or care. However, providing patient-centered care may not be easily realized in daily practice, as it requires specific skills of healthcare providers, and characteristics of the delivery system may be hindering. In the project Innovating care for people with multiple chronic conditions in Europe (ICARE4EU), we explored how patient-centeredness is currently given shape in innovative European integrated care initiatives for people with multimorbidity.Methods: In 2014, the ICARE4EU project selected 101 innovative integrated care practices (referred to as programmes) in 31 European countries. These programmes were collected via country experts and the selection of programmes was based on pre-defined criteria. Via questionnaires, the programme managers provided details about the characteristics of the selected programmes, including characteristics related to patient-centeredness. Eight of the programmes were considered very innovative based on the questionnaire and were therefore visited by two ICARE4EU project partners.Results: Almost all managers of the 101 integrated care programmes reported that the programme improved patient-centeredness (92%), but there was a wide variety in the tools that were used for this purpose. For instance, motivational interviewing by care providers was applied in 52 practices. Furthermore, case managers were appointed in 41 practices. In 70 practices individual care plans were introduced, but implementation of such plans was often lower than intended. In almost half of the selected innovative care programmes, the involvement of informal carers was described as an objective. Informal carers are addressed by as co-client in 17 programmes and as co-care provider in 27 programmes. Reported barriers to provide more patient-centered care were e.g. inadequate knowledge of patients (61%), lack of time (56%), inadequate knowledge or skills of care providers (45%) and lack of a clear vision of managers (40%). To illustrate successful approaches as well as their barriers, specific programmes will be discussed in more detail, including the Finnish POTKU project.Discussion: A positive attitude of healthcare providers is key, but not sufficient to provide care that is really patient-centered. Structural changes are needed in all domains, e.g. training, care delivery, information systems and financing. The involvement of informal carers as co-client and co-carer seems not generally applied yet in current European integrated care programmes. A limitation of our study is that not all of the selected integrated care programmes were visited. Therefore, practices could deviate from what was described in the questionnaire. Furthermore, we found that the effects of the selected innovative programmes were often not evaluated. A suggestion for future research is therefore to evaluate the effects of current innovative practices on for instance quality and efficiency of care.Conclusion: Based on observations from the ICARE4EU project, it can be concluded that efforts are being undertaken in many European countries, directed at improving the quality of care for people with multimorbidity by incorporating elements of patient-centeredness. Certain elements of patient-centered care, such as the involvement of patients in shared-goal setting, the involvement of informal carers and the use of care plans are not generally applied yet.

Working in partnership with patients and carers.

Health policy and healthcare professional guidelines promote patient and carer involvement, which includes working in partnership with service users in all aspects of healthcare provision, research and education. This article explores the expectations for nurses to work in partnership with patients and carers, examines the definitions and theories of working in partnership and related concepts, as well as considering examples of partnership working in nursing practice.

A critical examination of the knowledge contribution service user and carer involvement brings to social work education

Service user/carer involvement in social work education is supported by the Health Care Professions Council and currently, by the Department of Health. It is generally seen as beneficial but the reasons why this may be the case are often under-theorised and seen as un-problematic. This article seeks to provide a theoretical justification for an approach which values involvement as central to educational practice. It begins by looking at models of participation and how they can help us understand processes of involvement. It suggests that to move beyond tokenistic approaches we need to develop an approach which is based on equality and partnership. Drawing on European approaches to social pedagogy, particularly those utilising ‘the Common Third’, and debates around creativity and social power the article articulates an approach based on the co-production of curricula and assessment artefacts. This, the paper suggests, tests the students ability to empathise and communicate with people using services and utilises the latters’ personal expertise to bring the curricula alive. The article outlines a theory of creativity, inclusion and power which the author believes validates the approach developed and which provides a model for evaluating the real level of recognition given to the service user/carer voice within the educational process, particularly in social work education. It is suggested that such an approach is consistent with the social work professions’ commitment to the promotion of social justice and social change.

Patients and carers as teachers in psychiatric education: a literature review and discussion.

The direct involvement of patients and carers in psychiatric education is driven by policy in the United Kingdom and Ireland. The benefits of this involvement are well known, however, it is important to consider the ethical aspects. This paper suggests how further research could explore and potentially mitigate adverse outcomes. A literature search evaluating the role of patients and carer involvement in psychiatric education was undertaken to summarise existing evidence relating to the following: methods of involvement, evidence of usefulness, patient's/carer's views and learners' views. The Medline search produced 231 articles of which 31 were included in the literature review based on the key themes addressed in the paper. The available evidence is generally positive regarding the use of patients and carers in psychiatric education. However, available research is varied in approach and outcome with little information on the ethical consequences. More research is required to inform policies on teaching regarding potential adverse effects of service user involvement.

Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership.

BackgroundIt has been suggested that the research priorities of those funding and performing research in transplantation may differ from those of end service users such as patients, carers and healthcare professionals involved in day-to-day care. The Kidney Transplant Priority Setting Partnership (PSP) was established with the aim of involving all stakeholders in prioritising future research in the field.MethodsThe PSP methodology is as outlined by the James Lind Alliance. An initial survey collected unanswered research questions from patients, carers and clinicians. Duplicate and out-of-scope topics were excluded and the existing literature searched to identify topics answered by current evidence. An interim prioritisation survey asked patients and professionals to score the importance of the remaining questions to create a ranked long-list. These were considered at a final consensus workshop using a modified nominal group technique to agree a final top ten.ResultsThe initial survey identified 497 questions from 183 respondents, covering all aspects of transplantation from assessment through to long-term follow-up. These were grouped into 90 unanswered “indicative” questions. The interim prioritisation survey received 256 responses (34.8% patients/carers, 10.9% donors and 54.3% professionals), resulting in a ranked list of 25 questions that were considered during the final workshop. Participants agreed a top ten priorities for future research that included optimisation of immunosuppression (improved monitoring, choice of regimen, personalisation), prevention of sensitisation and transplanting the sensitised patient, management of antibody-mediated rejection, long-term risks to live donors, methods of organ preservation, induction of tolerance and bioengineering of organs. There was evidence that patient and carer involvement had a significant impact on shaping the final priorities.ConclusionsThe final list of priorities relates to all stages of the transplant process, including access to transplantation, living donation, organ preservation, post-transplant care and management of the failing transplant. This list of priorities will provide an invaluable resource for researchers and funders to direct future activity.

Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey

ContextCarers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease that focus on symptoms are scarce and absent for breathlessness. ObjectivesTo establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness, and relevant outcomes for a future randomized controlled trial of an educational intervention for carers. MethodsAn online survey was completed by 365 clinicians: medical, nursing, and allied health professionals from primary care, hospital, and hospice. Descriptive statistics summarized respondent characteristics and survey responses, and the Chi-squared test was applied. Content analysis of free-text comments was conducted. ResultsMost clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an ‘add-on’; an active carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence and/or control, helping patients' better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice, and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life as very important in enhancing clinician adoption of an educational intervention for carers. ConclusionThis survey revealed an appetite among clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II randomized controlled trial.

Outcomes focused user involvement in social work education: applying knowledge to practice

This paper discusses an innovative approach connecting service user and carer involvement (SUCI) in social work education to social work practice. The research team, comprised service users, carers, social work students and module leader, worked collaboratively democratising the research process. At the University of Dundee, a core social work module facilitates students to spend 15 h with a service user and/or carer (host) gaining a unique insight into their everyday lives. During this time, hosts and students discuss two policy practice questions, responses to these questions are generating annual qualitative data, with study findings being disseminated at local and national level. The experiential learning students acquire from spending time with their host becomes the site of knowledge creation through involvement that is applied to practice. This paper reports on the narratives emerging from the longitudinal data (2012–2015, n = 90) on the changing landscape of social care in Scotland and the dissemination of project findings. We explore the intersection where the voices of service users and carers, student learning and social work practice coalesce. A model of outcomes focused SUCI is introduced as a template for meaningful, sustainable and outcomes-focused SUCI in social work education.

Autism, mental health and offending behaviour: a mother’s quest for healthcare

Purpose The purpose of this paper is to describe the experiences of a mother of a son who was diagnosed with Asperger syndrome and psychosis in adulthood, the impact of this on his behaviour, and her quest to obtain healthcare. Design/methodology/approach Case study. Findings While a striking story in its own right, the experiences described have a number of wider implications for the treatment of mental ill heath in ASD, the exclusion of families and carers from the care of their adult children in services, and the impact of this on the individuals directly affected. Research limitations/implications The paper offers a number of practical recommendations for the understanding and management of autism in generic mental health services, and the involvement of families and carers in the care of their relative. Originality/value This is the first paper to describe mental ill health and offending behaviour in ASD, from the perspective of a mother.

Towards improved decision support in the assessment and management of pain for people with dementia in hospital: a systematic meta-review and observational study

BackgroundPain and dementia are common in older people, and impaired cognitive abilities make it difficult for them to communicate their pain. Pain, if poorly managed, impairs health and well-being. Accurate pain assessment in this vulnerable group is challenging for hospital staff, but essential for appropriate management. Robust methods for identifying, assessing and managing pain are needed.Aims and objectivesTwo studies were undertaken to inform the development of a decision support tool to aid hospital staff in the recognition, assessment and management of pain. The first was a meta-review of systematic reviews of observational pain assessment instruments with three objectives: (1) to identify the tools available to assess pain in adults with dementia; (2) to identify in which settings they were used and with what patient populations; and (3) to assess their reliability, validity and clinical utility. The second was a multisite observational study in hospitals with four objectives: (1) to identify information currently used by clinicians when detecting and managing pain in patients with dementia; (2) to explore existing processes for detecting and managing pain in these patients; (3) to identify the role (actual/potential) of carers in this process; and (4) to explore the organisational context in which health professionals operate. Findings also informed development of health economics data collection forms to evaluate the implementation of a new decision support intervention in hospitals.MethodsFor the meta-review of systematic reviews, 12 databases were searched. Reviews of observational pain assessment instruments that provided psychometric data were included. Papers were quality assessed and data combined using narrative synthesis. The observational study used an ethnographic approach in 11 wards in four UK hospitals. This included non-participant observation of 31 patients, audits of patient records, semistructured interviews with 52 staff and four carers, informal conversations with staff and carers and analysis of ward documents and policies. Thematic analysis of the data was undertaken by the project team.ResultsData from eight systematic reviews including 28 tools were included in the meta-review. Most tools showed moderate to good reliability, but information about validity, feasibility and clinical utility was scarce. The observational study showed complex ward cultures and routines, with variations in time spent with patients, communication patterns and management practices. Carer involvement was rare. No pain decision support tools were observed in practice. Information about pain was elicited in different ways, at different times, by different health-care staff and recorded in separate documents. Individual staff made sense of patients’ pain by creating their own ‘overall picture’ from available information.LimitationsGrey literature and non-English-language papers were excluded from the meta-review. Sample sizes in the observational study were smaller than planned owing to poor documentation of patients’ dementia diagnoses, gatekeeping by staff and difficulties in gaining consent/assent. Many patients had no or geographically distant carers, or a spouse who was too unwell and/or reluctant to participate.ConclusionsNo single observational pain scale was clearly superior to any other. The traditional linear concept of pain being assessed, treated and reassessed by single individuals did not ‘fit’ with clinical reality. A new approach enabling effective communication among patients, carers and staff, centralised recording of pain-related information, and an extended range of pain management interventions is proposed [Pain And Dementia Decision Support (PADDS)]. This was not tested with users, but a follow-on study aims to codesign PADDS with carers and clinicians, then introduce education on staff/patient/carer communications and use of PADDS within a structured implementation plan. PADDS will need to be tested in differing ward contexts.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Dietitians' perceptions and experience of blenderised feeds for paediatric tube-feeding

ObjectiveThere is an emerging interest in the use of blenderised food for tube-feeding (BFTF). This survey explored paediatric dietitians' perceptions and experiences of BFTF use.DesignA web-based questionnaire was distributed to...

Aims for service user involvement in mental health training: staying human

Purpose The purpose of this paper is to examine the impact of service user involvement in mental health training but little is known about what staff, trainees and service users themselves want to achieve. Design/methodology/approach Three separate focus groups were held with service users, training staff and trainees associated with a clinical psychology training programme. Thematic analysis was used to identify aims for involvement. Findings All groups wanted to ensure that future professionals “remained human” in the way they relate to people who use services. Service user and carer involvement was seen as a way of achieving this and mitigating the problem of “them and us thinking”. The authors found that groups had some aims in common and others that were unique. Service users highlighted the aim of achieving equality with mental health professionals as an outcome of their involvement in teaching. Research limitations/implications The samples were small and from one programme. Practical implications Common aims can be highlighted to foster collaborative working. However, the findings suggest that service users and carers, staff and trainees may also have different priorities for learning. These need to be recognised and addressed by mental health educators. Originality/value This was the first study to explore in depth the differing aims of different stakeholder groups for service user involvement. Clarification of aims is a vital first step in developing any future measure of the impact of service user involvement on mental health practice.

Developing involvement during a programme of recovery research

Purpose The purpose of this paper is to consider the process of working with a Lived Experience Advisory Group (LEAP) and its outcomes in REFOCUS, a large five-year programme of recovery research. Design/methodology/approach Narrative reflections on the experience of working with LEAP were collected from five members and the chair of LEAP, two REFOCUS researchers and the principal investigator. These were synthesised to show both the process and outcomes of LEAP involvement in REFOCUS, and how involvement evolved organically over time. Findings Individual reflective accounts showed how working with LEAP impacted (to a greater or lesser extent) on each individual involved in the process, providing new insights and influencing, to varying degrees, the way in which they then worked with LEAP. Synthesis of the reflections showed how these changes impacted organically on LEAP’s process of involvement, with a shift in LEAP’s role from being purely consultative/advisory towards one which was much more about co-production, with LEAP pro-actively contributing to some aspects of REFOCUS in the later stages of the study. Practical implications The authors stress the importance of considering process as well as outcomes in patient and public involvement, and make practical recommendations for improving both in future programmes of research. Originality/value This is the first empirical evaluation of user and carer involvement and its development during a large recovery research programme.

Initial testing of a behavioural pain assessment tool within trauma units

Pain is common in trauma patients who may be older and also may have cognitive impairment leading to reduced communication about their pain. A number of observational pain assessment tools are available and have been found to have limited clinical usefulness. The Bolton Pain Assessment Tool (BPAT) was developed following a trial of three established tools and includes a section to involve family and/or close carers in the pain assessment process. The aim of this paper is to present the findings of initial testing of BPAT. BPAT was used and evaluated by clinical staff in four trauma units in the UK. Forty-six staff evaluations were completed and 98% indicated it was easy to use; it took between one and two minutes to complete by 69.5% and led to pain management interventions by 93.5% of the respondents. It was rated highly by the clinical staff, but the involvement of families and close carers in the assessment process was different at each unit, with one unit not involving the family/close carer. There remains the need for a simple and practical way of assessing pain. This initial testing of the clinical feasibility of BPAT suggests that it is easy to use and helps to identify pain, but further testing of its reliability and validity is required.