A qualitative study of service user experiences of occupation in forensic mental health

Background/aim: This qualitative study explored occupational engagement of those detained in forensic units. Legal and institutional restrictions on occupation have implications for their health and wellbeing. Method: Twenty‐six current forensic mental health service users participated in five focus groups, which were audio‐recorded, transcribed verbatim and subjected to constant comparative analysis. Findings: The participants highlighted previous occupations, current occupations and hopes. Key aspects were control over decision‐making, motivation and support, generating suggestions alongside positive experiences of occupational therapy. Conclusions: Institutional barriers could be overcome with a dynamic balance between risk management and mental health promotion through occupation. This demands a sustained focus on occupation for everyone involved in providing care and treatment in these settings.     

Exploring the influence of service user involvement on health and social care services for cancer

Background Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. Aims and objectives The aim of this study was to explore the influence of the cancer network partnership groups’ service user involvement activities on cancer care. Design This was a qualitative study involving documentary analysis and in‐depth case studies of a sample of partnership groups. Setting and participants Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. Results and conclusions The evidence from this study suggests that cancer network partnership groups are at their most influential at ‘grass roots’ level – contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups’ aim is to influence strategic changes, for example in cancer care commissioning or macro‐level policy decision‐making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital.     

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.     

Service user involvement in mental health service commissioning,development and delivery: A systematic review of service level outcomes

Introduction

Service user involvement is increasingly considered essential in mental health service development and delivery. However, the impact of this involvement on services is not well documented. We aimed to understand how user involvement shapes service commissioning, development and delivery, and if/how this leads to improved service-level outcomes.

Methods

A systematic review of electronic databases (MEDLINE, PsycINFO, CINAHL and EMBASE databases) was undertaken in June and November 2022 for studies that incorporated patient involvement in service development, and reported service-level outcomes. Included studies were synthesised into a logic model based on inputs (method of involvement), activities (changes to service) and outputs (indicators of improvement). PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines were followed when conducting this review.

Results

From 10,901 records identified, nine studies were included, of which six were judged to have used co-production or co-design approaches. Included studies described service user involvement ranging from consultation to co-production. We identified a range of outputs associated with service user involvement in service planning and delivery, and reported these in the form of a logic model. These service-level outputs included improved treatment accessibility, increased referrals and greater service user satisfaction. Longer-term outcomes were rarely reported and hence it was difficult to establish whether outputs are sustained.

Conclusion

More extensive forms of involvement, namely, co-design and co-production, were associated with more positive and substantial outputs in regard to service effectiveness than more limited involvement methods. However, lived experience contributions highlighted service perception outputs may be valued more highly by service users than professionals and therefore should be considered equally important when evaluating service user involvement. Although evidence of longer term outcomes was scarce, meaningful involvement of service users in service planning and delivery appeared to improve the quality of mental health services.

Patient or Public Contribution

Members of a lived experience advisory panel contributed to the review findings, which were co-authored by a peer researcher. Review findings were also presented to stakeholders including service users and mental health professionals.     

Service user involvement in cancer care: the impact on service users

Background Service user involvement is embedded in the United Kingdom’s National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. Objective To explore the personal impact of involvement on the lives of service users affected by cancer. Design We conducted eight focus groups with user groups supplemented by nine face‐to‐face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. Setting and participants Sixty‐four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. Results We identified three main themes: (i) ‘Expectations and motivations for involvement’– the desire to improve services and the need for user groups to have a clear purpose, (ii) ‘Positive aspects of involvement’– support provided by user groups and assistance to live well with cancer and (iii) ‘Challenging aspects of involvement’– insensitivities and undervaluing of involvement by staff. Conclusions This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers’ activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.     

Service user involvement in the coproduction of a mental health nursing metric: The Therapeutic Engagement Questionnaire

Service users’ involvement in mental health service research is increasingly acknowledged as important, yet, whilst involving users of mental health services as research participants is commonplace, seeking out their experience and indeed their “expertise” to facilitate the development of tools to be used within mental health services is in its infancy. This article describes the involvement and views of service users in the development of a nursing metric—the Therapeutic Engagement Questionnaire. It presents their role in the three stages of development: generation, statement reduction and authentication.     

The user perspective on managing for health outcomes: the case of mental health

The Department of Health has placed great importance on evidence-based purchasing rooted in the assessment and measurement of health outcomes. This paper critically examines the conventional clinical effectiveness approach and argues for the integration of a user perspective in defining and determining health outcomes. Some conceptual issues around user involvement in mental health are considered first. Then we draw upon research with users and carers of a community orientated acute mental health service to examine users conceptions of outcomes. It is argued that incorporating a user perspective on outcomes has to involve a consideration of the entire course and experience of mental illness, i.e. the meaning to users and significant others of “becoming” and “being ill”. The paper relates users' perceptions of positive outcomes to their sense of self-management of their illness. Thus, a positive user-centred service response, when help is sought from mental health professionals, is one which both acknowledges that self-managing strategies are no longer sufficient, while also seeking to understand the user (and carer) perspective of the onset, course and meaning of the illness. Moreover, it conceptualizes outcome not as a single entity, e.g. changes in behaviour, but in relation to needs viewed holistically and whose specific features change with the course of the illness. Finally, it challenges the over-simplistic concept of consumerism in health, based on securing feedback about patient satisfaction with services. Rather, it argues for an approach to service provision which combines user understandings of illness and coping strategies with the skills and interventions of professionals. Thus, it is not simply a question of professionals keeping users informed about treatment options but of actively seeking and taking into account the user perspective on their illness.     

The outcomes of partnerships with mental health service users in interprofessional education: a case study

This paper reports findings from a 5-year evaluation (1998-2003) of a postqualifying programme in community mental health in England which made a sustained attempt to develop partnerships with service users. Users were involved in the commissioning of the programme and its evaluation, as trainers and as course members. The evaluation employed mixed methods to assess: learners' reactions to user-trainers and users as course members; changes in knowledge, attitudes and skills; and changes in individual and organisational practice. Data were collected from participant observation of training, 23 individual and 18 group interviews with students and their managers (n=13), and student ratings of knowledge and skills at the beginning and end of the programme (n=49). The quality of care provided by students was rated by service users (n=120) with whom they worked, using a user-defined questionnaire. The quality of care, and mental health and quality of life outcomes were compared to those for two comparison groups (n=44) in areas where no training had taken place. In general, the students reported positive learning outcomes associated with the partnership orientation of the programme, and learning directly from and with service users. A higher proportion of programme users reported good user-centred assessment and care planning, and showed greater improvement in life skills compared to the comparators. This case study provides evidence of the value of partnership working with service users in interprofessional postqualifying education in mental health. The success is attributed to the design of the programme and the responsiveness of the programme board, which included service users. It may provide a useful model for programmes elsewhere and for other user groups. The case study itself provides a possible model for the systematic evaluation of partnerships with users in education and training.     

Involving mental health service users in quality assurance

OBJECTIVE: This study compares the process and outcomes of two approaches to engaging mental health (MH) service users in the quality assurance (QA) process. BACKGROUND: QA plays a significant role in health and care services, including those delivered in the voluntary sector. The importance of actively, rather than passively, involving service users in evaluation and service development has been increasingly recognized during the last decade. DESIGN: This retrospective small-scale study uses document analysis to compare two QA reviews of a MH Day Centre, one that took place in 1998 as a traditional inspection-type event and one that took place in 2000 as a collaborative process with a user-led QA agenda. Setting and participants The project was undertaken with staff, volunteers and service users in a voluntary sector MH Day Centre. Intervention The study compares the management, style, evaluation tools and service user responses for the two reviews; it considers staff perspectives and discusses the implications of a collaborative, user-led QA process for service development. RESULTS: The first traditional top-down inspection-type QA event had less ownership from service users and staff and served the main purpose of demonstrating that services met organizational standards. The second review, undertaken collaboratively with a user-led agenda focused on different priorities, evolving a new approach to seeking users' views and achieving a higher response rate. CONCLUSIONS: Because both users and staff had participated in most aspects of the second review they were more willing to work together and action plan to improve the service. It is suggested that the process contributed to an evolving ethos of more effective quality improvement and user involvement within the organization.     

Challenges faced by general practitioners and allied mental health services in providing mental health services in rural Queensland

OBJECTIVE: To examine the views of rural practitioners concerning issues and challenges in mental health service delivery and possible solutions. DESIGN: A qualitative study using individual semi-structured interviews. SETTING: Eight general practices from eight rural Queensland towns, three rural mental health services and two non-government organisations, with interviews being conducted before recent changes in government-subsidised access to allied health practitioners. PARTICIPANTS: A sample of 37 GPs, 19 Queensland Health mental health staff and 18 participants from community organisations. MAIN OUTCOME MEASURES: Analysis of qualitative themes from questions about the key mental health issues facing the town, how they might be addressed and what challenges would be faced in addressing them. RESULTS: There was substantial consensus that there are significant problems with inter-service communication and liaison, and that improved collaboration and shared care will form a critical part of any effective solution. Differences between groups reflected differing organisational contexts and priorities, and limitations to the understanding each had of the challenges that other groups were facing. CONCLUSIONS: Improvements to mental health staffing and to access to allied health might increase the ability of GPs to meet the needs of less complex patients, but specific strategies to promote better integrated services are required to address the needs of rural and regional patients with complex mental health problems. The current study provides a baseline against which effects of recent initiatives to improve mental health care can be assessed.     

Evaluation of community mental health services: comparison of a primary care mental health team and an extended day hospital service

Alongside mental health policies emphasising the need to focus on people experiencing serious, long-term problems, recent general healthcare policy is leading to the development in the UK of a primary care-led National Health Service. While most primary care-led mental health initiatives have focused on supporting general practitioners (GPs) in managing milder depression and anxiety, this article describes an evaluation comparing primary care-based and secondary care-based services for people with serious long-term problems. A survey of service users was carried out at three points in time using three measures: the Camberwell Assessment of Need, the Verona Satisfaction with Services Scales and the Lancashire Quality of Life Profile. Staff views were sought at two time intervals and carers' views were obtained towards the end of the 2-year study period. The results indicate that both services reduced overall needs and the users' need for information. The primary care service also reduced the need for help with psychotic symptoms whereas the secondary care service reduced users' need for help with benefits and occupation. There were no major differences in terms of satisfaction or quality of life. Primary care-based services therefore appear to have the potential to be as effective as more traditional secondary care services. However, a more comprehensive range of services is required to address the whole spectrum of needs, a conclusion supported by the views of staff and carers.     

Our roles are not at ease: The work of engaging a youth advisory council in a mental health services delivery organization

ObjectivesThere is growing policy impetus for including youth voices in health services research and health system reform. This article examines the perspectives of professionals in a mental healthcare organization charged with engaging young people as advisors in service transformation.MethodsAn institutional ethnography of a youth mental health services organization in Ontario, Canada, was conducted. Fieldwork consisted of twelve months of observation of meetings, interviews with youth advisors and adult service providers, with subsequent text analysis of engagement training and policy materials. The present article reports data from six adult professionals and related field observations.ResultsService providers’ efforts to engage youth were observed in three areas: a) supporting youth''s development as advisors, b) retaining and deepening youth participation while waiting for organizational change and c) embedding relationships between youth and adults at various levels within the system of care. This work denotes existing tensions between the values and ideals of youth engagement and the everyday demands of services delivery.ConclusionIn this setting, a fundamental dimension of this work consisted of negotiating tensions between the policy enthusiasm for engagement and its realization in a health services context. In describing these contextual challenges, we outline implications for consideration by other youth mental health services. Engagement efforts that are authentic and sustained require resources and flexibility, and leadership commitment to instil service users’ perspectives throughout multiple levels within the organization.     

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.