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.     

Attending to physical health in mental health services in Australia: a qualitative study of service users’ experiences and expectations

Evidence is unequivocal: the premature death of people with severe mental health problems is attributable primarily to cardiovascular disease, and healthcare provided is often suboptimal. With the overarching aim of improving outcomes, policies and guidelines oblige mental health services and psychiatrists to monitor cardio‐metabolic health of patients and intervene as appropriate. Practice is highly variable; however, with ongoing debate about resourcing and responsibilities dominated by clinicians who have identified disinterest among patients as influencing practice. Seeking to balance discussion, we posed the question ‘what do patients experience and expect of mental health services in relation to their physical health?’ To answer it, we interviewed a convenience sample of 40 service users recruited from a mental health service in Australia, early in 2015. Data were analysed using the framework approach. With few regarding themselves as healthy, participants were commonly concerned about side effects of medication, weight and fitness but rarely mentioned tobacco smoking. Participants’ accounts reinforce extensive research demonstrating variability in attention to physical health in mental health services. Reports by some participants of comprehensive care are encouraging, but widespread uncertainty about reasons for various assessments and denial of requests for management of medication side effects, including weight gain, gives cause for concern. Although participants in this study wanted to improve their health and health‐related quality of life, they acknowledged that their motivation and ability to do so fluctuated with mental health. They expected clinicians to work proactively, especially when symptoms compromised capacity for self‐care, and mental health services to provide or enable access to health‐promoting interventions. Attention should be given, as a matter of priority, to creating conditions (culture and infrastructure) needed to support sustained attention to physical health within services and, importantly, to full engagement of service users in management of their physical health.     

‘What makes an excellent mental health doctor?’ A response integrating the experiences and views of service users with critical reflections of psychiatrists

While therapeutic relationships are appropriately recognised as the foundation of mental health service, service users commonly report suboptimal experiences. With shared understanding critical to improvement in practice, we explored service users’ experiences and expectations of psychiatrists and consultations, engaging psychiatrists throughout the process. Using an iterative qualitative approach we co‐produced a response to the question ‘what makes an excellent mental health doctor?’ Experiences and expectations of psychiatrists were explored in interviews with 22 service users. Data collection, analysis and interpretation were informed by consultation with peer workers. Findings were contextualised in formal consultations with psychiatrists. As ‘masters of their craft’, excellent mental health doctors engage authentically with service users as people (not diagnoses). They listen, validate experiences and empathise affectively and cognitively. They demonstrate phronesis, applying clinical knowledge compassionately. Psychiatrists share service users’ aspiration of equitable partnership but competing demands and ‘professional boundaries’ constrain engagement. Consistent delivery of the person‐centred, recovery‐oriented care promoted by policy and sought by service users will require substantial revision of the structure and priorities of mental health services. The insights and experiences of service users must be integral to medical education, and systems must provide robust support to psychiatrists.     

Challenges for psychosocial rehabilitation services in the Lisbon Metropolitan Area: A qualitative approach

In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.     

Continuity of care: Validation of a new self-report measure for individuals using mental health services

Continuity of care is a concern for individuals with persistent mental illness who need diverse services over time in response to multiple and changing needs. Efforts to study continuity have been hampered by lack of appropriate instruments. The Alberta Continuity of Services Scale — Mental Health is a newly developed, self-report scale that assesses continuity of care across settings and providers. This study examined the structure, reliability, and validity of the measure among users of community mental health programs. Findings were positive. Scores captured both positive and negative perceptions of care. Factor analyses elucidated 3 components of continuity—system access, interpersonal aspects, and care team function. Associations between the continuity scores and selected client and service use measures supported its validity. The tool holds promise for system monitoring, but would need refinements to create a shorter, conceptually clearer version. Also, performance among individuals with mild and very severe levels of mental illness needs to be evaluated.     

Variation in dental service provision among adult migrant public-funded patients

OBJECTIVE: To examine type of care, oral health status and service patterns by country of birth and language. METHODS: A random sample of public-funded patients (n = 6, 109) was surveyed in 1995-96. RESULTS: Emergency care was highest among overseas-born patients who spoke a non-English language at home; edentulism was highest among Australian-born/English only patients; while a higher percentage of Australian-born persons were in the periodontal health category (chi 2; p < 0.05). Differences in caries experience were generally small (ANOVA; p < 0.05). Service provision varied by country of birth/language after controlling for socio-demographic characteristics, type of care, and oral health status in six service areas (logistic regression; p < 0.05). CONCLUSIONS: Service patterns may reflect behavioural and cultural factors of patients or providers operating independently of socio-demographic and oral health status variables. IMPLICATIONS: Variation and potential inequality in service patterns related to cultural factors existed within a group of disadvantaged patients.     

Is it time to abandon care planning in mental health services? A qualitative study exploring the views of professionals,service users and carers

Background

It has been established that mental health‐care planning does not adequately respond to the needs of those accessing services. Understanding the reasons for this and identifying whose needs care plans serve requires an exploration of the perspectives of service users, carers and professionals within the wider organizational context.

Objective

To explore the current operationalization of care planning and perceptions of its function within mental health services from the perspectives of multiple stakeholders.

Settings and participants

Participants included 21 mental health professionals, 29 service users and 4 carers from seven Mental Health Trusts in England. All participants had experience of care planning processes within secondary mental health‐care services.

Methods

Fifty‐four semi‐structured interviews were conducted with participants and analysed utilizing a qualitative framework approach.

Findings

Care plans and care planning were characterized by a failure to meet the complexity of mental health needs, and care planning processes were seen to prioritize organizational agendas and risk prevention which distanced care planning from the everyday lives of service users.

Discussion and conclusions

Care planning is recognized, embedded and well established in the practices of mental health professionals and service users. However, it is considered too superficial and mainly irrelevant to users for managing mental health in their everyday lives. Those responsible for the planning and delivery of mental health services should consider ways to increase the relevance of care planning to the everyday lives of service users including separating risk from holistic needs assessment, using support aids and utilizing a peer workforce in this regard.     

Profile of Community Mental Health Service Needs in the Moretele District (North-West Province) in South Africa

BACKGROUND: The emergence of democracy in South Africa led to a need to transform all public structures, including the health care system. The aim has been to transform these structures in order to bring them in line with the new culture of human rights. Transformation of the whole health care system is motivated by a number of key objectives, which include achieving equity in resource allocation and health service delivery, developing primary health care infrastructure and decentralising services to promote community participation. AIMS OF THE STUDY: In the context of de-institutionalising mental health services in South Africa, this study aimed to investigate community mental health service needs of mental health service users and that of their families in the Moretele district, North-West province, South Africa. METHODS: The study was conducted in three clinics situated in three different communities in the Moretele district. Data collection consisted of : 147 clinical record reviews, 105 interviews with patients followed by a joint interview with a family member, 83 interviews with caregivers and eight interviews with community key informants (traditional healers, a civic leader, a councillor, a retired teacher, and a physician). RESULTS: The majority of service users were males (54%). The mean age was 41 years and 63% had completed primary schooling.Patients were recorded as having only one of two primary diagnoses, namely schizophrenia (57%) or epilepsy (41%). However, a review of prescribed drugs and caregiver interviews showed that there was a presence of mood disorders among service users. The local hospital was service users primary entry point into the mental health care system, followed by traditional healers (30%). Interviews with service users, service providers and caregivers reveal limited knowledge of patient illness. Nevertheless, service users who had epilepsy were more likely to provide details of their illness than those with mental illness. Above half of service users had basic social skills such as bathing, eating, washing and using public transportation independently. Feelings of loneliness and isolation were common among service users in the community; seventy nine percent (79%), for example spent their days entirely in their homes. Only 7% reported contact with friends. Experiences of community discrimination and exploitation of people with mental illness were reported in key informant interviews and by service users themselves. DISCUSSION: The main community mental health service needs identified in this study were: (i) Improved quality of mental health services at clinics. (ii) Better co-ordination of services (clinic, hospital, social work and traditional healers) and removal of barriers to health service utilisation. (iii) Alleviation of the social isolation of mental health service users by building on existing community structures and individuals willing to engage in partnerships with service providers. The authors indentify a need to train primary health care providers in mental health in order to promote the adequate diagnosis and detection of common psychiatric illnesses.They also point out the need for social support interventions to enable people with mental illness to deal with loneliness and isolation and a need for psycho-educational programmes to make patients and caregivers better informed about mental illness.     

The Use of Public Mental Health Services by Older Californians and Complementary Service System Effects

Older adults with mental disorders are less likely to use specialty care than any other population group. In this study, we created a multisource secondary data file and examined the use of public mental health services by older adults across California’s county-based community mental health systems. We specifically considered complementary service system effects relative to compositional effects representing individual service users and more general contextual effects. Service use was defined in terms of treated prevalence rates, repeat service use, and intensity of service use. Differences across 49 county-based systems were evaluated by regressing the 3 service use measures onto compositional characteristics including client age, diagnosis, and insurance status; variables reflecting complementary service systems including mental health, health, long-term care, and aging services; and other contextual effects such as the size of the county population and average education level. The analyses were adjusted statistically for regional, yearly, and seasonal differences, and for longitudinal clustering within the 49 counties over 12 quarters of observation. Results suggested that older adults’ service use varied significantly from one county to the next, and differences were associated with both compositional and contextual effects. As the aging population continues to grow and place an increasing demand on public mental health service systems, this research may help policy makers and program administrators understand some of the critical elements that affect service use patterns among older adults.     

Learning from people with long‐term conditions: new insights for governance in primary healthcare

The introduction of top‐down centrally driven solutions to governance of healthcare, at the same time as increasing policy emphasis on greater ‘bottom up’ patient and public involvement in all aspects of healthcare, has set up complex tensions for policy implementation and healthcare practice. This paper explores the interplay of these agendas in the context of changes in primary healthcare services provided by the National Health Service in England. Specifically, it looks at service user involvement in a qualitative study of the professional response to changes in the governance and incentives in the care of people with long‐term conditions. Service users influenced and guided the study at local and national levels. Vignettes of patient stories developed by service users informed in‐depth interviews with 56 health and social care professionals engaged in the development of local policies and services for people with complex long‐term illness, and themes generated by cross case analysis were validated through service users. The findings presented here focus on four themes about risk and comparison of professionals' and service users' perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professional identity/helping people to help themselves, and managing expectations/professionals losing out. In this study, service user involvement added value by validating understandings of governance, framing debates to focus on what matters at the point of care and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in healthcare that take account of service user perspectives and enable interaction with professional groups could help validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for ‘opening up’ collaborative projects to evaluation and critical reflection of the interrelationships between the context, methods and outcomes of service user involvement.     

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.     

Profound health-care discrimination experienced by transgender people: rapid systematic review

Transgender people experience interpersonal and structural barriers which prevent them from accessing culturally and medically competent health care. This rapid systematic review examined the prevalence of health-care discrimination among transgender people in the U.S. and drew comparisons with sexual minority samples and the general U.S. population. Eight primary studies with 35 prevalence estimates were analyzed. Transgender populations experience profound rates of discrimination within the U.S. health-care system. Compared to sexual minorities, transgender participants appear to be more compromised in their access to health care. Service providers must change structural inequities which contribute to transgender people’s invisibility.     

The mental health users’ movement in Argentina from the perspective of Latin American Collective Health

ABSTRACT

The mental health users’ movement is a worldwide phenomenon that seeks to resist disempowerment and marginalisation of people living with mental illness. The Latin American Collective Health movement sees the mental health users’ movement as an opportunity for power redistribution and for autonomous participation. The present paper aims to analyze the users’ movement in Argentina from a Collective Health perspective, by tracing the history of users’ movement in the Country. A heterogeneous research team used a qualitative approach to study mental health users’ associations in Argentina. The local impact of the Convention on the Rights of Persons with Disabilities and the regulations of Argentina’s National Mental Health Law are taken as fundamental milestones. A strong tradition of social activism in Argentina ensured that the mental health care reforms included users’ involvement. However, the resulting growth of users’ associations after 2006, mainly to promote their participation through institutional channels, has not been followed by a more radical power distribution. Associations dedicated to the self-advocacy include a combination of actors with different motives. Despite the need for users to form alliances with other actors to gain ground, professional power struggles and the historical disempowerment of ‘patients’ stand as obstacles for users’ autonomous participation.     

The prevalence of mental health problems among users of NHS stop smoking services: effects of implementing a routine screening procedure

Background

Tobacco dependence among people with mental health problems is an issue that deserves attention both from a clinical and from a public health perspective. Research suggests that Stop Smoking Services often fail to ask clients about underlying mental health problems and thus fail to put in place the treatment adaptations and liaison procedures often required to meet the needs of clients with a mental health condition who want to stop smoking. This study assesses the recording of mental health problems in a large NHS stop smoking service in England and examines the effect of implementing a short screening procedure on recording mental health conditions.

Methods

Treatment records from the Stop Smoking Service covering a period of 13 months were audited. The prevalence of reported mental health problems in the six month period before the implementation of the mental health screening procedure was compared with that of the six month period following implementation. The screening procedure was only implemented in the support services directly provided by the Stop Smoking Service. Comparisons were also made with third-party sections of the service where no such screening procedure was introduced.

Results

The prevalence of reported mental health problems among a total of n = 4999 clients rose from less than 1% before implementation of the screening procedure to nearly 12% in the period following implementation, with the change being statistically significant. No significant rise was observed over the same period in the sections of the service where no screening procedure was implemented.

Conclusions

The absence of standard procedures to record mental health problems among service users in many stop smoking services is currently likely to prevent the detection of co morbidity. Implementing a simple screening procedure appears suitable to increase the routine recording of mental health problems in a stop smoking service, which is an essential step to ensure services can be tailored and delivered appropriately to the client group.     

Taming systems to create enabling environments for HCV treatment: Negotiating trust in the drug and alcohol setting

HCV (hepatitis C) treatment uptake among the population most affected – people who inject drugs – is suboptimal. Hospital based treatment provision is one evidenced barrier to HCV treatment uptake. In response, HCV treatment is increasingly located in treatment settings seen as more amenable to people who inject drugs, such as drug and alcohol services. We explored the accessibility of HCV treatment provision at two such partnerships. Data collection comprised qualitative interviews collected in 2011 and 2012 with 35 service users and 14 service providers of HCV treatment in London, United Kingdom. We draw here primarily on thematic analyses of service provider accounts, yet narratives relating to trust and environment emerged unsolicited in both user and provider accounts of negotiated HCV treatment access. A key theme in service provider accounts were strategies they deployed to ‘tame’ the treatment system so as to create an ‘enabling environment’ of care, in which trust was a critical feature. This ‘taming’ of the system was enacted through practices of ‘negotiated flexibility’, including in relation to appointments, eligibility, and phlebotomy. Service user accounts accentuated familiar environments and known health providers as those most trusted, and the potentially stigmatising effects of negotiating treatment in unfamiliar territory, especially hospital settings. Whilst noting the effects of provider strategies to negotiate flexibility on behalf of would-be patients seeking treatment, we conclude by noting the limits of trust relations in settings of constrained choice.     

Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers’ experiences within a community‐based CPSW pilot program in an Australian mental health service. Semi‐structured phone interviews were conducted with 20 carer participants in 2015, 5–10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the “ripple effect” the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.     

Creating ‘therapeutic landscapes’ for mental health carers in inpatient settings: A dynamic perspective on permeability and inclusivity

Although there has been a shift toward treatment in the home and the community, in the UK, inpatient facilities are still important in modern mental health care. ‘Informal carers’, including family members, often play an essential role, not only in providing care in the community but also in care of patients during periods of hospitalisation. UK National Health Service policies increasingly consider the position of these carers as ‘partners’ in the care process, but relatively little attention has been paid to their position within the hospital settings where treatment is provided for inpatients. This paper contributes to geographical work on carers experiences, by reporting how this issue emerged through a study focused on perceptions of a newly built hospital, compared with the inpatient facilities it replaced. We draw on qualitative research findings from discussion groups and interviews with informal carers. The material considered here focused especially on carers' views of aspects of the hospital environment that were important for wellbeing of carers and the people they look after. The carers' views were supplemented by relevant material drawn from other interviews from our wider study, which included service users and members of hospital staff. These accounts revealed how informal carers experienced the hospital environment; we interpret our findings through a conceptual framework that emphasises carers' experiences of a ‘journey’ along a ‘caring pathway’ to and through the hospital space. This perspective allows us to make a connection between three bodies of literature. The first relates to phenomenological interpretations of one's environmental perception, formed as one moves through the world. The second derives from the literature concerning ‘permeability’ of hospital institutions. Bringing these ideas together provides an innovative, dynamic perspective on a third strand of literature from health geography that examines hospitals as ‘therapeutic landscapes’. The analysis helps to explore the extent to which carers in this study were positioned as ‘outsiders’ in the hospital space.     

Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

Patient and public involvement activities bring ‘lay participants’ and their accounts of lived experiences to the centre of health service development and delivery. For individuals, these accounts can provide an important resource, offering a sense of control and an opportunity to re-frame past events. Furthermore, as involvement activities and the use of personal accounts have become more prominent, it is timely to examine the involvement process from the perspective of the ‘lay participants’. Hence, the aim of this study is to explore how people become involved and how they construct the accounts of their lived experience. We analyse the stories of people with lived mental illness or caring experiences, who have become experts by experience (n = 13). We argue that becoming an expert by experience can help to re-contextualise past experiences and support the re-discovery of skills and expertise, leading experts by experience to construct both professionalised and politicised identities. The process has the potential to enforce narratives that portray illness experiences as motivators for social action and change. Additionally, we claim that the stories experts by experience share with health services and the public are not ‘lay accounts’ or ad hoc tales, but accounts constructed to serve specific purposes.