Experiences of service user and carer participation in health care education

The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium³ which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers.The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.     

Benefits of interprofessional education in health care

This article examines some of the literature regarding the benefits of interprofessional education (IPE) in the field of health care. These benefits in relation to service users (and carers), higher education institutions, service providers and students are all explored. Barriers to IPE are being broken down by many of the various stakeholders working towards a similar agenda. However, currently there remains some doubt as to whether IPE has a direct positive impact on the health gain of service users and carers. Research is needed to demonstrate if service users and carers benefit directly from IPE and if they do not, the reason for pursuing it needs to be questioned.     

Interprofessional professionalism: Linking professionalism and interprofessional care

The provision of high-quality education and training that is responsive, relevant, accessible and evidence based is critical if the vision for quality mental health services presented in recent policy initiatives in Ireland is to be fulfilled. This paper reports the findings related to pedagogical approaches and quality assurance mechanisms utilized within mental health education. The study involved canvassing all Higher Education Institutions in Ireland. A total of 227 courses in 31 educational institutes were identified and 149 questionnaires were returned from 129 Course Coordinators. Various quality processes were identified in existing programs; however, formal feedback from service providers, service users and carers was seldom reported. Ongoing evaluation and quality assurance strategies are a key element of governance and there is a need to develop strategies that explore the impact of education programs on mental health education and health outcomes. Recommendations are made in terms of future interprofessional mental health education and practice.     

A survey of pedagogical approaches and quality mechanisms used in education programs for mental health professionals

The provision of high-quality education and training that is responsive, relevant, accessible and evidence based is critical if the vision for quality mental health services presented in recent policy initiatives in Ireland is to be fulfilled. This paper reports the findings related to pedagogical approaches and quality assurance mechanisms utilized within mental health education. The study involved canvassing all Higher Education Institutions in Ireland. A total of 227 courses in 31 educational institutes were identified and 149 questionnaires were returned from 129 Course Coordinators. Various quality processes were identified in existing programs; however, formal feedback from service providers, service users and carers was seldom reported. Ongoing evaluation and quality assurance strategies are a key element of governance and there is a need to develop strategies that explore the impact of education programs on mental health education and health outcomes. Recommendations are made in terms of future interprofessional mental health education and practice.     

'A caring professional attitude': What service users and carers seek in graduate nurses and the challenge for educators

With the publication of the new NMC standards for pre-registration nursing education, undergraduate curricula are being written in universities across England. There are many drivers for the curricula but one that has until recently received scant attention is the service user's and carer's voice. This paper discusses the findings of a qualitative study that asked 52 service users and carers about the qualities they sought in nurses and their views on nurse education. Eight focus groups were conducted with a broad range of service users and carers from primary and secondary care, and voluntary organisations. Data were analysed using the framework approach facilitated by a qualitative analysis software programme. The sample was diverse, but there were similarities in the qualities they valued in nurses. They sought technical competence, knowledge and willingness to seek information, but overwhelmingly prioritised 'a caring professional attitude'. This was articulated as empathy, communication skills and non-judgmental patient centred care: major themes in the new NMC standards. Our participants also expressed concern about whether the educational preparation of nurses can develop these caring qualities. We discuss this concern, the challenges for nurse educators it presents and how we can engage service users and carers in shaping and delivering our new curricula.     

Involving service users in the classroom with social work students

The purpose of this paper is to explore and discuss issues related to the requirement by the Scottish Social Services Council (SSSC) and the Scottish Government that service users and carers are partners and stakeholders in social work education. This requirement is one of several that are used by the SSSC in the approval of Scottish Universities to deliver social work courses. This paper explains the developmental process of involving service users and carers as partners in the planning of social work courses at the Robert Gordon University (RGU), Aberdeen. This is illustrated with reference to a group made up of young people ('The Voice of Reason') and also in relation to a group made up of adult service users (the Service User Panel). This short paper suggests there are benefits for student learning if we invite service users and carers to become partners in the teaching/learning process. There are also benefits for teaching staff and indeed for the University itself as a public institution on the basis that an ongoing relationship allows for good partnership working. This enables the University and its staff to be viewed positively and from that vantage point further developments are more likely. At the same time this paper has discussed the need to avoid tokenistic moves through ensuring a sound organisational commitment is made to providing effective support and putting in place enabling structures and processes. Lastly it discusses the broader implications for partnership working in relation to the education and training of students for professional practice. The suggestion is made that such a teaching and learning approach equips the students with good partnership skills and attitudes that will help to inform their practice post-qualification. Interest is expressed in the experiences of other professions who have adopted similar approaches to incorporating service users into students' learning experiences.     

Family and carer participation in mental health care: perspectives of consumers and carers in hospital and home care settings

It is widely accepted that family and carer participation in adult mental health care is desirable. However, rarely is service development informed by representative opinions of both carers and service users. This study took place in the context of a larger project to introduce and evaluate practice standards relating to family participation. The aim of this paper is to explore the perceptions of service users and carers to carer participation in adult mental health services. One hundred and twenty-nine service users and 86 family members recruited via hospital and community settings completed a survey which addressed obstacles to family participation, perceived benefits of participation and areas for improvement. Many service users and family were entirely satisfied with existing levels of family participation. Different needs for information, support and the nature of participation in mental health care are highlighted in acute hospital and community settings. Across settings, the provision of support and accessing services were identified as the most useful aspects of family participation. Meaningful carer and family participation in mental health care should proceed from respectful connection with carers and be informed by need which will vary depending on setting and circumstances.     

'Pizza, patients and points of view': Involving young people in the design of a post registration module entitled the adolescent with cancer

Health policy and education directives emphasise the need to involve service users and carers in healthcare, from service design and delivery to the education of healthcare professionals. This paper describes a pilot project aimed at eliciting teenagers and young people with cancer views in relation to the content of a continuing professional development module entitled 'adolescents with cancer'. Seven young people participated in the project. The project design was based on the Participation - spice it up [Shephard, C., Treseder, P., 2002. Participation: spice it up! Dynamix, Swansea] framework, which aims to ensure effective and appropriate involvement of service users and carers. 'Post-it ideas storm' 'diamond ranking' and 'dot voting' were used to elicit the young people's views. The teenagers and young people could clearly articulate the qualities they felt nurses should have when caring for adolescents with cancer. They also identified topics they felt were important to include in the module, with an understanding of, and using, humour being given the highest priority. This was not originally included in the module timetable but as a direct result of consulting with the young people changes were made to reflect their views.     

The pursuit of excellence and innovation in service user involvement in nurse education programmes: Report from a travel scholarship

The involvement of service users and carers in nurse education is increasing, with the new standards for pre-registration nurse education in the UK, which require nurse education providers to demonstrate how they are involving users and carers in the planning, delivery, teaching and evaluation of nursing curricula (Nursing and Midwifery Council, 2010). A travel scholarship provided the opportunity to explore best practice in this area, focussing on identifying support systems and processes that enable user involvement.The scholarship was undertaken in the UK and Ireland during a 4 week study tour between June and July 2011, during which I visited 15 universities, and met with nurse education staff, users and carers involved in nurse education programmes. Prerequisite processes, the spectrum and variety of involvement activities, quality assurance and evaluation; and sustainability of user involvement in nurse education are reported in this paper. Service users and carers are an under-utilised resource, and as experts by experience have much to offer students and staff by increased involvement in nurse education programmes. The importance of values, enthusiasm and relationships, the cornerstones that strengthen user involvement; often sustain such partnerships.     

Users' views on palliative care services: ethical implications

This article is based on the findings of a study that elicited the views of terminally ill patients (n = 15), their carers (n = 10) and bereaved carers (n = 19) on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field.     

Saudi service users’ perceptions and experiences of the quality of their mental health care provision in the Kingdom of Saudi Arabia (KSA): A qualitative inquiry

This paper presents, as part of a larger mixed‐methods design, a study generating a theoretical understanding of issues pertinent to the quality of mental health care in the KSA from the perspective of those using services. Semi‐structured interviews were undertaken with thirty service users admitted to inpatient psychiatric wards, using an interview guide developed by the researchers, based on relevant literature. Findings from the thematic analysis showed five themes: (1) The hospital as a prison: a custody versus care dilemma, (2) quality of interactions between staff and service users, (3) quality of services, (4) staff qualities and (5) suggestions for achieving quality of care. A theoretical model drawing upon Donabedian Health Care Model for Evaluating quality of care and the Andersen Behavioural Model of Health Service Use is evident from the data. Structural aspects of care include staff experience and qualifications and key enablers around social and financial support, service users’ health needs and status and the physical infrastructure and ward rules. These drive processes of care based upon robust rates of interaction between staff and service users and appear central to quality of mental health care in KSA. Quality of mental health care in KSA is manifested by a therapeutic ethos with a high degree of interaction between professional carers and service users, with the former being highly educated, competent, compassionate, with a high degree of self‐awareness, and specialized in mental health. We have uncovered elements of Fanon and Azoulay’s ‘Cultural Originality’ as well as contemporary examples of Goffman’s mortification of the self.     

Creating alliances: the views of users and carers on the education and training needs of community mental health nurses

The Sussex Education and Training Consortium commissioned a development project to identify the education and training needs of Community Mental Health Nurses (CMHNs) working with people with severe mental illness. The concerns of various stakeholding groups were identified using a qualitative methodology, Responsive Evaluation. This paper reports the views of 52 service users and representatives and 24 carers and career support workers as expressed in semi-structured interviews and focused discussion groups. Users and carers were able to identify specific areas that require attention in the education and training of CMHNs. Users want CMHNs to have wide knowledge of mental illness, medication, therapies and services and the understanding and confidence to work in an empowering way. They also want CMHNs to systematically involve users and their carers in care planning and to make more explicit any communication with other professionals and agencies. Carers want more involvement and information and CMHNs made more aware of the role that carers play and the specific problems they face. Users and their organisations would like significant involvement in the provision of CMHN education and training at all levels. Developments to CMHN education and training are suggested with recommendations for research and evaluation.     

Sheltering: whose responsibility is it? An experience report

This paper is about the sheltering of users in a basic health unit in Porto Alegre/RS according to the experience during the Integrated Residency Program in Collective Health at the Public Health School and reflections about specific bibliography. Sheltering is the manner in which the health service is organized to attend to its users and to answer their demands, relying on health education processes aiming to build a different relation than that established in "emergency rooms". It is believed that the nurse is the professional indicated for this task because of its basic education in collectivity and integralized human care.     

The value of involvement from the perspective of service users and carers engaged in practitioner education: not just a cash nexus

This paper presents qualitative findings emergent from a participatory action research (PAR) study focused on developing service user and carer involvement in a university setting. The involvement of these experts by experience in practitioner education for health and social care, and nursing in particular, is now an international phenomenon. Adhering to the philosophy and practices of PAR, the project and the writing of this paper have been collectively produced. Data has been organised using simple thematic analysis into three broad themes accounting for different ways in which participating service users and carers obtain a sense of value from their involvement. We have titled these themes: a more positive sense of self; social and relational benefits; altruism in activism. Drawing on these participant narratives we develop an understanding of the relationship between involvement and reward that does not simply reflect value in payment.     

Telephone survey of service‐user experiences of a telephone‐based mental health triage service

The participation of service users in all aspects of mental health service delivery including policy development, service planning and evaluation is increasingly an expectation of contemporary mental health care. Although there are a growing number of publications reporting service‐user perspectives in the evaluation of mental health services, little attention has been paid to the views of service users about mental health triage services. The purpose of the study reported here was to examine service‐users' (consumers and informal carers) experiences of a telephone‐based mental health triage service. Using a framework developed from the World Health Organisation's elements of responsiveness, we conducted structured telephone interviews with service users who had contacted a telephone‐based mental health triage service in regional Victoria, Australia. The main findings of the study were that consumers experienced more difficulty than carers in accessing the service and that, although most participants were satisfied, only a minority reported being involved in decision‐making. Further work is needed to improve accessibility of mental health triage services and to investigate barriers to consumer self‐referral. Professional development and practice support systems should be established to support mental health triage nurses in the development of collaborative, consumer‐focused care.     

Practice standards to improve the quality of family and carer participation in adult mental health care: an overview and evaluation

ABSTRACT:  Mental health services are required to involve family, carers, and service users in the delivery and development of mental health services but how this can be done in routine practice is challenging. One potential solution is to prescribe practice standards or clear expectation relating to family involvement. This paper describes practice standards introduced to an adult mental health service and a study that aimed to evaluate the impact of the standards on practice. Hospital and community files were audited before and after the introduction of standards for evidence of participation and surveys of carers and consumers relating to the quality of participation were undertaken. Increases in documented carer participation were found, particularly in relation to treatment or care planning. The expressed needs relating to participation varied in hospital and community settings. The majority of carers and service users were satisfied with their level of participation. The introduction of practice standards is an acceptable, inexpensive, and feasible way of improving the quality of family and carer participation, but gains may be modest.     

Collaboration in crisis: Carer perspectives on police and mental health professional's responses to mental health crises

For many situations involving a mental health crisis, carers (e.g. family or friends) are present and either attempt to help the person overcome the crisis or request assistance from professional services (e.g. mental health or police). Comparatively, little research has explored how carers experience the crisis, the professional response and how the nature of the response, in turn, impacts carers. The current study was conducted to explore these issues during individual interviews with nine carers who had previous contact with police and mental health services during a crisis response. Collected data described the definition and perceived impact of a mental health crisis for carers, how carers had experienced a crisis response from police and mental health services, and how the professional response had impacted on carers. Of importance was the finding that carers were often themselves traumatized by witnessing or being involved in the crisis, however, were rarely offered direct education or support to help them cope or prevent future crises. A number of carers described a reluctance to request assistance from professional services due to previous poor experiences. This highlighted the importance of implementing strategies to deliver more timely, respectful, specialist and collaborative crisis responses to improve carer and consumer outcomes.     

Young, gifted, and caring: a project narrative of young carers, their mental health, and getting them involved in education, research and practice

Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals.     

Liverpool Telecare Pilot: telecare as an information tool

The role of telecare systems is normally seen as identifying, and drawing attention to, situations of concern in the homes of service users. While this may currently be the primary reason for deploying such systems, the scope of telecare should not be limited to such an alarm generation role. The role of telecare in enhancing community-based care provision may be broadened by using similar, or identical, technology for providing relevant information to the carers of service users. In this paper we present a technical overview and discussion of an information provision approach to telecare which was trialled as one aspect of a pilot service in Liverpool, UK. The service used data collected by the telecare system to produce visual daily behavioural profiles and presented these to carers. The recipients for these profiles included social workers, occupational therapists and relatives of the service users. In this paper we discuss the visual profiles together with the benefits offered by such an information provision approach, including the perspective of a occupational therapist based in Liverpool.