Developing user involvement in a UK cancer network: professionals’ and users’ perspectives

This paper explores the results of a consensus development exercise that explored diverse perspectives and sought to identify key principles for the development of user involvement in a cancer network. The exercise took place within one of 34 UK cancer networks and was a collaboration between the NHS, two universities and two voluntary sector organizations. The paper explores professionals’ and users’ perspectives on user involvement with reference to the current sociopolitical context of user participation. British policy documents have placed increasing emphasis on issues of patient and public participation in the evaluation and development of health services, and the issue of lay participation represents an important aspect of a critical public health agenda. The project presented here shows that developing user involvement may be a complex task, with lack of consensus on key issues representing a significant barrier. Further, the data suggest that professional responses can partly be understood in relation to specific occupational standpoints and strategies that potentially allow professionals to define and limit users’ involvement. The implications of these findings and the impact of the consensus development process itself are discussed.     

Collaboration, facilities and communities in day care services for older people

Collaborative working in care for older people is often seen as a desirable goal. However, there can be problems with this approach. This paper reports on a single blind randomized controlled trial which was carried out to compare outcomes of rehabilitation in two settings: a day hospital and social services day centres augmented by visiting therapists. The subjects were 105 older patients. Principal outcome measures were the Barthel Index, Philadelphia Geriatric Centre Morale Scale and the Caregiver Strain Index. Two aspects of the trial are examined here. Firstly, we investigated whether trial patients were more disabled than regular day centre attendees. Levels of health and well being amongst trial patients were compared with those of a random sample of 20 regular attendees from both of the participating day centres and an additional voluntary sector day centre. Secondly, key staff from the different settings were interviewed to assess how well the day centre model had worked in practice. Trial patients were significantly more disabled than regular day centre attendees according to the Barthel Index (P < 0.001), but this difference was no longer significant after three months of treatment. The day centre model had several problems, principally discharge policy, acceptability, facilities and attitudes of staff and regular attendees. Positive aspects of the day centre model, as well as successful rehabilitation, included shared skills, knowledge and resources. This paper suggests that collaborative working in day centres requires multipurpose facilities. If health staff maintain a permanent presence, benefits can include improved joint working, easier access to health care and the use of rehabilitative therapy as a preventative strategy. Day care settings can be analyzed as representing different types of communities. Allowing older users a greater degree of choice in facilities may increase the acceptability of care.     

Accessing the user's perspective

Pressure is increasing on health care providers in the UK to demonstrate that they incorporate the views of users when planning and evaluating services. Most recently this has been seen in the commissioning of the National Patients' Experiences Survey. It is timely therefore to review the progress that has been made in trying to access the user's perspective. The aim of this paper is to assist individual service providers in planning their own strategy of user involvement and evaluation, based on an awareness of the current state of knowledge in this area. It reviews the results of research in the field of patient satisfaction over the last 20 years; summarises the main problems in the area, and suggests ways forward. Three main points emerge: the importance of developing and substantiating theory in this field to support study design; the need to exercise care if using quantitative methods and global satisfaction scores, until the process of evaluation is better understood, and the need to consider how a sensitive user-led agenda can be developed. The paper calls for a pause for reflection on the reason for our inquiry into user opinion, and for careful consideration of how we might best design studies to obtain information to fulfil this inquiry.     

Redesigning mental health services: lessons on user involvement from the Mental Health Collaborative

Objectives To explore the involvement of mental health service users in the redesign of in‐patient mental health services in six Trusts participating in a multi‐regional NHS modernization programme. Design Semi‐structured interviews and observation of team meetings undertaken as part of an action research study. Participants and setting Users, clinical, medical and managerial staff from six mental health trusts which participated in the Northern & Yorkshire and Trent regions’ Mental Health Collaborative (MHC). Results and conclusions Whilst there were some problems, user involvement was undoubtedly a strength of the MHC in comparison to other modernization programmes within the NHS we have studied. However, the particular challenges posed by the specific context of acute mental health services should not be overlooked. The initial approach taken in each of the sites was to simply invite a user or user representative to join the local project team. In the course of events, various changes were made to this initial mechanism for involving users in the ongoing work of the teams. These changes – and setbacks in some sites – make drawing firm conclusions as to the effectiveness of the various strategies employed problematic. However, our qualitative data suggest a number of broad lessons that will assist both those leading and participating in other redesign initiatives to maximize the benefits to be gained from service user involvement.     

Involving service users in the development of the Support at Home: Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia

Background

Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users.

Objectives

The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia (SHIELD Carer Supporter Programme).

Design

Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open‐ended responses were thematically analysed.

Setting and participants

Study 1: twenty‐five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation.

Results

Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear.

Discussion and conclusions

Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research.     

Costs and economic consequences of a help‐at‐home scheme for older people in England

Solutions to support older people to live independently and reduce the cost of an ageing population are high on the political agenda of most developed countries. Help‐at‐home schemes offer a mix of community support with the aim to address a range of well‐being needs. However, not much is currently known about the costs, outcomes and economic consequences of such schemes. Understanding their impact on individuals’ well‐being and the economic consequences for local and central government can contribute to decisions about sustainable long‐term care financing. This article presents results from a mixed‐methods study of a voluntary sector‐provided help‐at‐home scheme in England for people of 55 years and older. The study followed a participatory approach, which involved staff and volunteers. Data were collected during 2012 and 2013. Social care‐related quality of life was measured with the Adult Social Care Outcomes Toolkit for 24 service users (59% response rate) when they started using the scheme and 4–6 months later. A customised questionnaire that captured resource use and well‐being information was sent to 1064 service users (63% response rate). The same tool was used in assessment with service users who started using the scheme between November 2012 and April 2013 (100% response rate). Costs of the scheme were established from local budget and activity data. The scheme was likely to achieve a mean net benefit of £1568 per person from a local government and National Health Service (NHS) perspective and £3766 from the perspective of the individual. An expenditure of £2851 per person accrued to central government for the additional redistribution of benefit payments to older people. This article highlights the potential contribution of voluntary sector‐run help‐at‐home schemes to an affordable welfare system for ageing societies.     

Analysis of the forms, functions and facilitation of social support in one English county: a way for professionals to improve the quality of health care

Voluntary organisations are an integral part of community care, and the available research indicates the value of their social support role. However, surprisingly little is known about the forms and functions of this support, or the links to the formal support provided by the National Health Service (NHS), so hampering quality improvements. Therefore, a small sample of voluntary service organisations in one English county participated in a pilot study. This involved the staff and users of these organisations, and a geographically linked sample of NHS mental health professionals. Interview data indicated that the voluntary sector users and staff held similarly positive views of the appropriately varied forms and functions of the provided social support, and all participants held unusually similar and positive views of their links, although areas for improvement were suggested by both groups (e.g. links to GPs).     

Mental Health Services for Children in Large, Employer-Based Health Plans, 1999

This study examines 1999 data from Medstat's MarketScan database of privately insured employees of US firms and their dependents. Of enrolled children and adolescents ages 2-18, 6.6% had claims for mental health services. Average outpatient expenditures per user were $651. Of children/adolescents with claims for mental health services (MH claimants), 3.4% had inpatient MH services, with an average length of stay of 8.9 days and average MH-related inpatient expenditure per user of $7,048. One half of MH claimants who had pharmacy benefit data had claims for psychotropic medications, with average expenditures per user of $328. Whereas children/adolescent mental health users comprised 8.3% of all service users, expenditures for their care were 20.5% of all service expenditures for children/adolescents in private health plans. Results also highlight the importance of including data on psychotropic medication in analysis of children's MH services utilization, as well as the need to consider the use of psychotropic medications among children/adolescents who do not utilize other MH services.     

Prevention better than cure? Health consumer and patients’ organisations and public health

Previous studies of groups representing patients, users and carers in the UK indicate that their principal focus is on health care and treatment services. In recent years, UK government policy has emphasised prevention and health promotion as part of its wider public health agenda. This paper investigates how this might have affected health consumer and patients' organisations (HCPOs) by presenting findings from an online survey of 312 UK groups undertaken in the summer of 2010. The sample was identified using the publicly available membership lists of a number of large alliance organisations. The survey achieved a 39% response rate. The findings suggest that the main focus of lobbying and campaigning remains on health care rather than public health issues. However, a significant minority of groups stated they prioritised public health campaigning and lobbying. Possible explanations for engagement with the public health agenda include: the presence of public health on the government's agenda, the influence of other, more powerful interests in the health policy process, and growing awareness among groups of health promotion, prevention and environmental causes of illness. The paper argues that although HCPOs may be more active in the public health policy arena, more research is needed - notably with regard to their relationship with devolved governments, EU institutions and the current UK government's public health and voluntary sector agenda. The reasons why some groups engage more than others with the public health agenda also merit closer investigation. Moreover, not enough is currently known about the influence of HCPOs on the public health agenda and policies in this field.     

Service user experiences of specialist mental health supported accommodation: A systematic review of qualitative studies and narrative synthesis

Specialist supported accommodation services have become a key component of most community‐based mental healthcare systems. While mental health policies highlight the importance of service user involvement in service development and care planning, there are no comprehensive literature reviews synthesising services users’ perspectives on, or experiences of, supported accommodation services. This systematic review was undertaken to fill this gap. We searched electronic databases (January 2015, updated June 2017), conducted hand searches and used forward‐backward snowballing to identify 13,678 papers. We inspected the full‐text of 110 papers and included 50 of these in the final review. Data extraction and quality assessments were conducted. We used narrative synthesis to develop a conceptual model of service users’ experiences that included structural, process, relational and contextual factors, such as the characteristics of the service, relationships with staff and other service users, the intensity and nature of support, the physical environment, and social and community integration. The review highlights the complex interplay of individual, service‐level and community factors in shaping the lived experience of service users and their impact on personal identity and recovery. Our approach addressed some of the widely reported limitations of the quantitative research in this field, providing a conceptual model relevant to service user experiences across supported accommodation service types, population groups and countries.     

Evaluation of the information and support services in the voluntary sector using a new P-C-P (pivotal-core-peripheral) attributes model.

This paper describes the development and use of a modified SERVQUAL research instrument for measuring the service quality of voluntary organizations from the perspective of their 'customers'. A series of focus group meetings were run with providers and users of the services to identify the appropriate dimensions of service quality. These were structured meetings led by the researchers addressing set questions in a group setting. The meeting enabled the identification of six different dimensions of service quality which neatly mapped on to the pivotal-core-peripheral (P-C-P attributes model [Philip and Hazlett, 1997]), which was developed after extensive research of existing models such as SERVQUAL. These dimensions were used to develop a questionnaire to assess service quality within the voluntary sector. The questionnaire was distributed to 2005 service users, representing eight voluntary organizations from across Northern Ireland. The research resulted in the development of a methodology and research instrument suitable for measuring service quality in the voluntary sector.     

Healthy partnerships,healthy citizens? An international review of partnerships in health and social care and patient/user outcomes

As a result of changes in the governance of health and social care organizations across developed welfare states they are under increasing pressure to work in partnership with each other (at an organizational and inter-professional level) and with the private and voluntary sector. Drawing on a comparative literature review of the theoretical and empirical evidence from health and social care partnerships across developed welfare states, this paper aims to examine the policy drivers behind such changes and the effects the changes have had on the governance of health and social care, the results for service commissioners and practitioners, and particularly the results for patients and service users. It examines some of the evidence that suggests that patient/user involvement and outcomes may at best be unaffected, and at worst be negatively compromised by shifts towards increasing partnership working in health and social care. It will conclude by discussing what lessons can be drawn about service re-organization and user involvement in welfare organizations generally, and how best to protect the interests of vulnerable and disenfranchised groups of service users.     

Healthy partnerships,healthy citizens? An international review of partnerships in health and social care and patient/user outcomes

As a result of changes in the governance of health and social care organizations across developed welfare states they are under increasing pressure to work in partnership with each other (at an organizational and inter-professional level) and with the private and voluntary sector. Drawing on a comparative literature review of the theoretical and empirical evidence from health and social care partnerships across developed welfare states, this paper aims to examine the policy drivers behind such changes and the effects the changes have had on the governance of health and social care, the results for service commissioners and practitioners, and particularly the results for patients and service users. It examines some of the evidence that suggests that patient/user involvement and outcomes may at best be unaffected, and at worst be negatively compromised by shifts towards increasing partnership working in health and social care. It will conclude by discussing what lessons can be drawn about service re-organization and user involvement in welfare organizations generally, and how best to protect the interests of vulnerable and disenfranchised groups of service users.     

Bridging the gap? A critical analysis of the development of the Patient Advice And Liaison Service (PALS).

PURPOSE: The creation of the Patient Advice and Liaison Service (PALS) was part of a range of measures to make the NHS more patient-centred. The purpose of this paper is to present a critical analysis of PALS through examining the impact on major stakeholder groups. DESIGN/METHODOLOGY/APPROACH: The paper starts by examining the drivers for reform and the significance of PALS in the wider policy context. Key issues for implementation are then discussed including access to information, independence, cultural change in the health service and relationships with the voluntary sector. Research literature on the provision of advice in health care settings is drawn on. FINDINGS: Taking a critical perspective, the paper argues that the current model of PALS can never succeed in bridging the gap between users and the health service and will end up merely defending service interests. It concludes by arguing for an alternative model of development based on fostering strong partnerships with the community and voluntary sector. PRACTICAL IMPLICATIONS: This paper highlights critical issues for service development and delivery, including examining the impact on service users and the voluntary sector. ORIGINALITY/VALUE: PALS is a very significant development in the health care provision, operating at the interface between the service and the public and yet its development has attracted little critical comment. This paper provides a comprehensive analysis of the new service and proposes an alternative model of development.     

Experience and meaning of user involvement: some explorations from a community mental health project

With an increased interest in and policy commitment to involving service users in the planning and delivery of health service provision, there is a clear need to explore both the rhetoric and realities of what user involvement entails. In the present paper, by drawing upon an evaluation of a community-based exercise facility for people with mental health problems, the authors explore ways in which the reality of user involvement is subject to a range of configurations within health services. The paper describes a piece of qualitative research that was undertaken within a participatory framework to explore the nature of user involvement within the facility. The data have been analysed using a grounded theory approach to provide insights into: the organisational context in which user involvement takes place; factors which encourage meaningful participation on the part of service users; perceived barriers to user involvement; and issues of sustainability and continuity. This research approach has enabled the authors to explore the views and experiences of users, service providers and referral agencies in relation to the nature and potential for user involvement. The findings illustrate ways in which user involvement may take place under both flexible and formal arrangements across a variety of activities. The present paper provides an account of some of the meanings and experiences of what 'successful' user participation may involve and the conditions which underpin 'success'. The authors conclude that successful and meaningful user involvement should enable and support users to recognise their existing skills, and to develop new ones, at a pace that suits their particular circumstances and personal resources. This process may require adaptation not only by organisations, but also by service providers and non-involved users.     

The impact of service user involvement in research

PURPOSE: There are many examples of consumer involvement in NHS research but few studies have examined the impact of this on service development or the research process. This study, involving service user and carer researchers working alongside professional researchers, aimed to examine the development of one service user and carer research group in a mental health Trust. DERSIGN/METHODOLOGY/APPROACH: The research involved a review of existing literature on consumer involvement in research, a review of user involvement in research in South West Yorkshire Mental Health NHS Trust, a survey of consumers and NHS staff in the Trust, and a skills audit and training needs analysis of consumers. FINDINGS: The study identified the range and extent of consumer involvement and the impact of this on consumers and the Trust. Service users and carers were involved in a range of projects, mainly on the level of consultation or collaboration. The benefits for consumers were principally on a personal level and included gaining knowledge and experience, improved sense of well-being, self esteem, and confidence. The benefit for the Trust was in having a service user perspective and focus. However, there is a tendency to omit service users from planning and setting priorities. PRACTICAL IMPLICATIONS: The study pointed to the need to build the evidence base on consumer involvement in research, particularly in terms of how consumers can impact on setting research priorities and selecting appropriate methods. It identifies the need for more training for consumers and for NHS staff and for a more coherent strategy. ORIGINALITY/VALUE: This article will be of value to anyone who is at the start or in the early stages of their journey of consumer involvement. It identifies some of the practical issues faced by consumers and staff in working collaboratively, but also points to the benefits for all the stakeholders.     

Empowerment and care management: swimming against the tide

This paper is concerned with the policy and practice of care management, that is, the system for assessing care needs and arranging services to meet them, developed under the legislative framework of National Health Service (NHS) and Community Care Act 1990. The paper takes as its starting point the contrast between the rhetoric of service user empowerment in professional training, particularly of social workers, with the disempowering realities that arise in practice. It examines some of the sources of this conflict, looking in particular at contradictions inherent within the development of care management as a policy, conflicts contained within the legislation and associated guidance and contradictions evident at the level of practice. It argues that organizational processes and procedures consequent upon care management as it is evolving in practice are decreasing the possibilities for empowering practice and reinforcing the power of care managers at the expense of service users. It suggests that the power of the care manager is based on increased administrative and managerial responsibility, counterbalanced by diminishing professional autonomy and discretion. Some possibilities for future development if empowerment is to survive as a meaningful concept within care management are outlined. The paper concludes that there are serious limitations on the scope for empowerment within care management and that the real hope for empowerment lies in the encouragement and support of user-led initiatives in service planning, evaluation and provision.     

What matters to users of services? An explorative study to promote shared decision making in health care

Background Involving service users and carers in decisions about their health care is a key feature of health‐care practice. Professional health and social care students need to develop skills and attributes to best enable this to happen. Aims The aims were to explore service user and carer perceptions of behaviours, attributes and context required to enable shared decision making; to compare these perceptions to those of students and academic staff with a view to utilizing the findings to inform the development of student assessment tools. Methods A mixed methods approach was used including action learning groups (ALG) and an iterative process alongside a modified Delphi survey. Participants The ALGs were from an existing service user and carer network. The survey was sent to sixty students, sixty academics and 30 service users from 16 different professional disciplines, spanning four Universities in England. Results The collaborative enquiry process and survey identified general agreement that being open and honest, listening, showing respect, giving time and being up to date were important. The qualitative findings identified that individual interpretation was a key factor. An unexpected result was an insight into possible insecurities of students. Conclusions The findings indicate that distilling rich qualitative information into a format for student assessment tools could be problematic as the individual context could be lost, it is therefore proposed that the information could be better used as a learning rather than assessment tool. Several of those involved identified how they valued the process and found it beneficial.     

Partnerships with health and private voluntary organizations: what are the issues for health authorities and boards?

BACKGROUND: The number of voluntary organizations active in health care is considerable. There have been recent calls for a new closer working relationship between voluntary bodies and the National Health Service. The relationship between the two healthcare sectors needs to be efficient and harmonious in the interests of patient care; however, little is known about the nature and problems in the current relationship. The present study was undertaken to examine aspects of this relationship from the point of view of health board personnel. OBJECTIVE: To identify the practices and views of Scottish health board staff concerning the funding, role and responsibility of voluntary organizations in the health sector. METHODS: A qualitative study based on in-depth interviews with health board officials in all 15 Scottish health boards. RESULTS: Policies for financial and other relationships with the voluntary sector were often not explicit. The levels and method of funding voluntary health organizations varied across boards, as did the tenure of awards (from 1 to 3 years). Demand for funding far exceeded monies available. Some health boards ensured accountability through audited accounts, annual reports and site visits; however, others thought this inappropriate for small organizations. Health boards recognized the problems of the precariousness of funding and the administrative burden of the monitoring process and the ritual of applying for funding. CONCLUSION: The uncertainties of long-term funding may impede the contribution of voluntary organizations. There is a tension between the requirements of clinical governance and the ability of small voluntary organizations to provide the necessary documentation. One proposed solution, to reduce the number of organizations, might not appeal to the voluntary sector. Future initiatives could address the problem of tailoring funding and accounting to the resources of voluntary organizations.     

Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study

OBJECTIVE: To assess the benefits of involving health-care users in diabetes research. DESIGN AND PARTICIPANTS: For this qualitative case study, semi-structured interviews were conducted with researchers who had worked extensively with the group. During regular meetings of the Research User Group, members discussed their views of the group's effectiveness as part of the meeting's agenda. Interviews and discussions were transcribed, coded using N-Vivo software and analysed using constant comparative methods. RESULTS: Involvement of users in research was generally seen as contributing to effective and meaningful research. However, the group should not be considered to be representative of the patient population or participants of future trials. An important contributor to the group's success was its longstanding nature, enabling users to gain more insight into research and form constructive working relationships with researchers. The user-led nature of the group asserted itself, especially, in the language used during group meetings. A partial shift of power from researchers to users was generally acknowledged. Users' main contribution was their practical expertise in living with diabetes, but their involvement also helped researchers to remain connected to the 'real world' in which research would be applied. While the group's work fulfilled established principles of consumer involvement in research, important contributions relying on personal interaction between users and researchers were hard to evaluate by process measures alone. CONCLUSIONS: We demonstrated the feasibility, acceptability and effectiveness of this longstanding, experienced, lay-led research advisory group. Its impact on research stems from the continuing interaction between researchers and users, and the general ethos of learning from each other in an on-going process. Both process measures and qualitative interviews with stakeholders are needed to evaluate the contributions of service users to health research.