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.     

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 communities in health service planning in primary care

Recent health service policy in the United Kingdom has emphasized the need to involve local people in health service planning. This paper will describe how local communities were involved in the development of Primary Care Resource Centres. These centres are designed to provide a base for the delivery of a range of health, social welfare and information services within a community setting. Four centres in the process of being developed in one region were selected for in-depth study. The main method of data collection consisted of semi-structured interviews with key “stakeholders”, namely purchasers and providers of primary health care, social care providers, hospital outreach staff and local community and voluntary group workers (Weiss 1983). This paper examines how the health service organizations developing the centres involved local communities in planning them and the obstacles and difficulties encountered. The paper suggests lessons that can be learned for future community involvement in the planning of local health services.     

The impact of community mental health reform on service users: a cohort study

British mental health services have undergone considerable reform in recent years. This paper reports a study designed to assess the impact of these changes on service users. The functioning of 100 randomly selected users of community mental health services in a North Wales town was assessed before the advent of two significant service changes – the establishment of a local Community Mental Health Team (CMHT) and the introduction of the main community care reforms in April 1993. Repeat assessments of sample members were made on three further occasions over the following 27 months, with a 9-month interval between each. Comparison of baseline and follow-up data suggested that services were appropriately targeted on users with a severe and enduring mental illness and that the functioning of this client group was successfully maintained over the study period. However, the establishment of a CMHT was associated with a temporary fall in social functioning, quality of life and satisfaction with services and there was no evidence to conclude that organizational reforms had led to an improvement in user outcomes in the medium term. Future mental health reorganization should be based on the evidence of research which includes an assessment of the impact of reforms on service users.     

Mutual powerlessness in client participation practices in mental health care

Background Client participation has become a dominant policy goal in many countries including the Netherlands and is a topic much discussed in the literature. The success of client participation is usually measured in terms of the extent to which clients have a say in the participation process. Many articles have concluded that client participation is limited; professionals often still control the participation process and outcomes. Objective The objective of this study is to gain insight into (i) the practice of client participation within a quality improvement collaborative in mental health care and (ii) the consequences of a Foucauldian conceptualization of power in analysing practices of client participation. Design We used an ethnographic design consisting of observations of national events and improvement team meetings and interviews with the collaborative’s team members and programme managers. Results Contrary to many studies on client participation, we found both clients and service providers frequently felt powerless in its practice. Professionals and clients alike struggled with the contributions clients could make to the improvement processes and what functions they should fulfil. Moreover, professionals did not want to exert power upon clients, but ironically just for that reason sometimes struggled with shaping practices of client participation. This mutual powerlessness (partly) disappeared when clients helped to determine and execute specific improvement actions instead of participating in improvement teams. Conclusion Recognizing that power is inescapable might allow for a more substantive discussion concerning the consequences that power arrangements produce, rather than looking at who is exerting how much power.     

Information in mental health: qualitative study of mental health service users

BACKGROUND: Despite the widespread proliferation of consumer health information provision, little is known about information needs or information-seeking behaviour in mental health. A qualitative study was therefore undertaken to explore these issues for mental health service users. DESIGN: In-depth interview study with purposive sample of 36 men and women with experience of mental health problems. RESULTS: Four main themes were identified. A general lack of information was equated with a lack of respect. People undertook their own research into their condition, and recognized the challenge to professionals. Stigma was widespread and inhibited information seeking. There was a desire for an explanation of mental health problems in physical terms. People particularly valued hearing other people's experience of mental health problems, for reasons of universality, instillation of hope, and understanding and empathy. CONCLUSIONS: The findings provide support for a more equal partnership between patients and professionals. Information providers and health practitioners should take account of the value of other people's experience as an information source.     

Symptoms,functioning and quality of life after treatment in a residential sub‐acute mental health service in Australia

The aim of this study was to assess clients' and service providers' perspectives on changes in mental health after an admission to a residential recovery‐focused, sub‐acute service, in Australia. Clients were either step‐up clients, entering the service directly from the community, or step‐down clients who were transitioning from an inpatient unit to home. During the 30‐month period of data collection (August 2011 to January 2014) all clients (N = 102) were invited to participate in the longitudinal study and 41 clients consented to be involved (38% response rate). At admission and exit, participants completed the Behaviour and Symptom Identification Scale (Basis‐32) and service providers completed the Life Skills Profile‐16 and Health of the Nations Outcome Scales. Follow‐up data 3 months after exit were available for 12 clients, including the Basis‐32 and a self‐report measure of quality of life (Assessment of Quality of Life 8‐dimension). Both client groups reported positive improvements between admission and exit in the areas of relation to self and others, psychosis, daily living and presence of depression or anxiety symptoms. Service providers reported gains for clients in the areas of self‐care, level of symptoms and presence of social problems. At 3 months, clients generally reported positive quality of life, although there was no significant change in symptoms and functioning. This study demonstrates that after an admission to a sub‐acute service, step‐up clients experience an improvement in their symptoms and functioning, have avoided a hospital admission and are well enough to return home. Step‐down clients also experience further improvements in their symptoms and functioning, indicating that the service has assisted them in their transition to independent living after a hospital admission. Sub‐acute residential units provide a continuation of care for inpatients preparing to return home, and people with a mental health problem living in the community who experience an escalation in symptoms and prefer an alternative to hospital.     

User involvement in the construction of a mental health charter: an exercise in communicative rationality?

Background  This paper uses Jürgen Habermas's Theory of Communicative Action as a lens through which to examine the development of a local mental health charter.
Objective  To assess whether the Charter represents the product of a communicatively rational process.
Research design and setting  The paper is based on an analysis of the text of the Charter, and on documentation relating to its development, including notes of discussion groups used to identify its themes.
Findings  An analysis of the notes of the discussion groups against the text of the Charter shows that the Charter's themes are based broadly on the views generated in the discussion groups. However, they also draw on norms derived from wider discourses not reflected in the discussion groups, and exclude other specific local issues. The strength of feeling expressed in the discussion groups is also toned down in the language of the Charter.
Discussion  The development of the Charter was based on a participatory process that can be said to have contained elements of both communicative and strategic rationality. The strategic rationality involved in translating service users' views into language that would be acceptable to those working in the system can be seen as necessary for the Charter to succeed in bringing about change. In drawing also on communicatively generated norms from the wider public sphere the Charter can be seen as reflecting a form of generalized communicative rationality.
Conclusion  The Charter represents a 'sluice' by which communicative rationality is drawn into the mental health system.     

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.     

Close to the bench as well as at the bedside: involving service users in all phases of translational research

Aim The paper aims to develop a model of translational research in which service user and other stakeholder involvement are central to each phase. Background ‘Translational’ is the current medical buzzword: translational research has been termed ‘bench to bedside’ research and promises to fast‐track biomedical advances in the service of patient benefit. Models usually conceive of translational research as a ‘pipeline’ that is divided into phases: the early phase is characterized as the province of basic scientists and laboratory‐based clinical researchers; the later phases focus on the implementation, dissemination and diffusion of health applications. If service user involvement is mentioned, it is usually restricted to these later phases. Methods The paper critically reviews existing literature on translational research and medicine. The authors develop a theoretical argument that addresses why a reconceptualization of translational research is required on scientific, ethical and pragmatic grounds. Results The authors reconceptualize the model of translational research as an interlocking loop rather than as a pipeline, one in which service user and other stakeholder involvement feed into each of its elements. The authors demonstrate that for the ‘interlocking loop’ model of translational research to be materialized in practice will require changes in how health research is structured and organized. Conclusion The authors demonstrate the scientific, ethical and pragmatic benefits of involving service users in every phase of translational research. The authors’ reconceptualized model of translational research contributes to theoretical and policy debates regarding both translational research and service user involvement.     

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.     

‘Triadic’ shared decision making in mental health: Experiences and expectations of service users,caregivers and clinicians in Germany

BackgroundShared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users'' caregivers.AimThis study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties'' expectations towards the prospects of triadic SDM.DesignThe current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians.ResultsAll three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver''s role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases).ConclusionTriadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken.Public ContributionEarly results were discussed with a local peer support group for caregivers of individuals living with mental illness.     

Quality assurance in mental health-care: a case study from social work

The quality of health and social care is now a high priority for government, professionals, and the public. This is particularly true of mental health, where explicit standards lie at the centre of current policy, demanding the development of reliable means for quality assurance. These need to allow for the multiplicity of stakeholders in mental health-care, and their different constructions of "quality". The challenges presented are illustrated by this account of an action research programme, which was developed to improve social work practice in a multidisciplinary mental health service, and evaluated using a case study design. An action research approach was chosen in preference to an "off-the-shelf" quality assurance system, because it possessed features that appeared to match the context of the work. It involved feeding back the findings of a baseline assessment of service quality to four teams of social workers, who used the information to select priority areas for improvement. An action plan was developed with them, and its implementation and impact were examined. Substantial improvements were observed in only one of the chosen target areas--the quality of case recording. For the other--securing the clients' full involvement in their care plan--very limited improvements occurred. Interview data suggested that this was due to the presence of extensive organisational support for the first objective, but not the second. These findings suggest that while some features of action research can contribute to quality improvement, these must be incorporated into a more comprehensive programme of change, which commands the support of all the stakeholders involved.     

Occupational possibilities in a Brazilian mental health service: The perspective of users

Background: Psychosocial care centers (CAPS) are a type of service that redirects care to people with mental health problems in Brazil, de-emphasizing the asylum model and promoting the psychosocial model. Aim: To understand and analyze how CAPS contribute to the possibilities of occupational engagement of users. Methods: A qualitative research methodology was used and semi-structured interviews were conducted with 17 users of CAPS and 12 people from their social networks, totaling 29 interviews. Discourse analysis was used as a reference for data analysis. Results: CAPS provide opportunities, and, as users engage in the activities offered by CAPS, they can find the types of occupations that they want to perform and what they like to do, as their range of opportunities and access are expanded. However, promoting these occupational opportunities and choices in the community remains a challenge. Conclusions: CAPS have been able to help users improve their occupations in everyday life. Occupational therapists must build their clinical strategies in association with the opportunities offered by the health services and the community.     

儿童保健系统管理质量保证体系的建立和运行

【目的】 建立质量保证体系,正确履行系统保健的问询检查、判断评估及保健指导等7大功能,为儿童提供规范、便捷、全面的保健服务。 【方法】 以系统保健过程为对象,以相关文件和规程为指南,对系统保健质量体系的构成要素进行分析,在此基础上,从运行主体、过程方法、支持条件和监测评估4个方面进行设计。 【结果】 建立了基于“测查-评价-指导”一体化及其相应支持要素的儿童保健系统管理质量保证体系,该体系涵盖了系统保健的全部关键质量控制点,解决了系统保健中的质量控制和执行规范的难点。 【结论】 建立儿童保健系统管理质量保证体系并遵照执行,是系统保健行之有效的质量管理手段。     

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.