Voices Of Service Users Research Articles

Experience-based investigation and codesign of approaches to prevent and reduce Mental Health Act use (CO-PACT): a protocol

IntroductionThe Independent Review of the Mental Health Act (MHA) in England and Wales confirmed increasing levels of compulsory detentions, especially for racialised communities. This research aims to: (a) understand the...

Practitioner perspectives on best practice in non-treatment factors that support the delivery of repetitive transcranial magnetic stimulation (rTMS) for depression.

Accessible SummaryWhat is known about the subject? The practices of mental health nurses in the administration of repetitive transcranial magnetic stimulation (rTMS) treatments for depression in outpatient clinic are crucial for patient outcomesTo date, most research has focused directly on procedural aspects of treatment delivery with limited focus on the delivery of holistic care and treatment.There is a lack of best practice guidance based on the experiences of those involved in clinical delivery to inform and improve rTMS practices What this paper adds to existing knowledge? This study provides unique insights into service and personalized non‐treatment factors associated with rTMS delivery that may reduce stress and improve the experiences of rTMS patientsIt reviews and updates understanding of the factors that contribute to the delivery of effective rTMS. What are the implications for practice? The need to apply findings for the development of best practice guidanceFactors to improve practice include (a) rTMS machine demonstrations; (b) constructive, individualized, friendly, and therapeutic conversations; (c) a relaxing, comfortable, 'homely' physical environment; (d) long term supportive management; and (e) careful engagement of nursing and support staff.

Co-designing an Adaption of a Mobile App to Enhance Communication, Safety, and Well-being Among People Living at Home With Early-Stage Dementia: Protocol for an Exploratory Multiple Case Study.

BackgroundThere is a growing interest in using mobile apps to support communication, safety, and well-being. Evidence directly from people with dementia regarding the usability, usefulness, and relevance of mobile apps is limited.ObjectiveThis paper describes the protocol of a study that will evaluate an app designed for supporting communication, safety, and well-being among people living with dementia. The study aims to understand if the app can enhance safety through improved communication among users.MethodsThe study will use participatory qualitative methods over 3 cycles of evaluation with co-designers (service users, their families, and care practitioners). The study will be developed in partnership with a specialist home care service in England. Purposive case selection will be performed to ensure that the cases exemplify differences in experiences. The app will be evaluated in a walk-through workshop by people living with early-stage dementia and then trialed at home by up to 12 families in a try-out cycle. An amended version will be evaluated in a final walk-through workshop during cycle 3. Data will be collected from at least 4 data sources during the try-out phase and analyzed thematically. An explanatory multiple case study design will be used to synthesize and present the evidence from the three cycles, drawing on the Normalization Process Theory to support the interpretation of the findings.ResultsThe study is ready to be implemented, but it was paused to protect vulnerable individuals during the COVID-19 pandemic in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic as well as for providing insight into the challenges of social isolation that arise from living with dementia.ConclusionsEvaluating a mobile app for enhancing communication, safety, and well-being among people living with dementia contributes to the key ambitions enshrined in policy and practice—championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study will involve co-designers living with dementia, so that the voices of service users can be used to highlight the benefits and challenges of assistive technology and shape the future development of apps that enhance safety by improving communication.International Registered Report Identifier (IRRID)PRR1-10.2196/19543

Building readiness for inclusive practice in mainstream health services: A pre-inclusion framework to deconstruct exclusion

Across the globe, people are not equitably included or respected by health services. This results in some people being ‘hardly reached’ and having less access to safe and appropriate care. While some health services have adopted specific agendas to increase inclusion, these services can struggle to implement such strategies because the underlying reasons for exclusion have not been addressed. This calls for preparation prior to implementation of inclusion approaches that deconstructs discourses and practices of exclusion. This paper presents a pre-inclusion framework that seeks to deconstruct exclusion in health services. Authors developed this framework from action research in four ‘mainstream’ regional health services in southeast Australia over five years. Research identified dominant discourses of exclusion among staff in these services. The study also identified common experiences of residents hardly reached by these services. Following, a range of change activities were undertaken within these services to deconstruct exclusion. Researchers also kept journals, reflected on their impact, and identified lessons learned from trying to deconstruct exclusion. Triangulating these analyses, researchers developed an interdisciplinary framework that weaves together Foucauldian theory on power/discourse with continuous quality improvement processes to embed cultural humility and voices of the hardly reached in health care. The framework outlines five foundational concepts (power as productive, deconstruction, use of continuous quality improvement processes, cultural humility and voices of service users), followed by six principles (a journey, expect resistance, whole of service approach, make visible the reasons for change, we are all cultural beings and people centred care) and six actions undertaken within health services (commitment, assessment of exclusion, action plans, structural change, reflective discussions and engagement). Until such approaches to deconstruct exclusion are implemented, inclusive agendas are likely to be ineffective.

‘Waiting for the verdict’: the experience of being assessed under the Mental Health Act

Background Following the Independent Mental Health Act review, there is increasing focus on this coercive part of mental health services and a call for service user views to be central to proposed changes. Although there are numerous studies into being detained in hospital, there is a lack of data exploring the service user experiences of the assessment process. Aim To explore the subjective experience of being assessed under the Mental Health Act (MHA). Method 10 participants were interviewed about their recent assessment experience and the transcribed interviews were analysed using framework approach. Results The overarching theme of person centred care emerged from these interviews with interconnecting sub themes: 1) information and options; 2) “the barrage of three”; 3) “sit down and listen”; and 4) service user voice. Conclusion As one of the first studies into service user experiences of MHA assessments, this exploratory study indicates that there is lack of person centeredness. The Independent Mental Health Act review has set a challenge for treating person as individual and increasing rights and involvement of service users. This study suggests service user’s experiences do not yet meet this aspiration and they want to discuss these experiences and have their voices heard.

Co-creating an assistive technology peer-support community: learnings from AT Chat

Purpose Inclusion is a core philosophy for health practitioners and human service users, and co-production is a way to achieve inclusion. Australia’s assistive technology (AT) community seeks to include and amplify the voices of service and product users at multiple levels. Implementation of genuine partnerships for inclusion is however challenging. This paper describes the iterative co-design process undertaken to structure and deliver a peer-led information and support program, enabling AT users and supporters to build their AT decision making capability and share their expertise with each other and the broader community. Methods A living labs approach was grounded in co-design principles and drew on the peer education, AT competency and capability-building knowledge base. Methods included embedding intersectional capabilities within the service, and the engagement of over 600 people in design thinking and program iterations through surveys, focus groups, journey mapping and think tanks. Results A national, peer-led, co-designed online community for AT users was established and has been running since 2017. The community of 5000 users contribute to a peer-led information and support initiative geared to share expertise and build AT decision making capability. Conclusions Service delivery by the AT user community and for the AT user community requires a commitment to co-design, and an engagement with concepts of risk, competency, scope of practice and capability. The learnings from AT Chat have implications for AT services on this journey everywhere. Implications for rehabilitation Active co-design of AT services meets human rights and good practice benchmarks required by contemporary services. Foregrounding AT users within program design and delivery, brings a range of positive outcomes and possibilities for the way services are delivered. AT users have substantial untapped potential which brings tangible outcomes for other AT users, health professionals, service provider organizations and for society. Development of paid roles and pathways to recognize the skills of AT users, and indeed AT communities has potential to improve AT user self-efficacy as well as to contribute to the AT workforce.

Examining Barriers and Facilitators to Palliative Care Access in Rural Areas: A Scoping Review.

Despite the growth of palliative care (PC), access to PC remains challenging for rural Americans living with chronic diseases. Given the demand and benefits of PC, a comprehensive view of PC access would inform policymakers in developing PC services in rural areas. This scoping review aimed to understand the barriers and facilitators to PC access in rural areas from the voices of service users and service providers during the past decade. A scoping literature review was conducted from 2010 to 2020 using MEDLINE, CINAHL, and PsychINFO databases. Results: Twenty-eight studies met inclusion criteria. Barriers to PC access in rural areas mostly arose in structural issues: (1) the inadequate knowledge and awareness of PC among both service users and providers and (2) the poorly structured PC system. Other barriers included communication gaps/challenges between providers and patients/families and cultural barriers. The facilitators mainly originated in patients/families' connectedness with local providers and with other social networks such as friends. These findings highlight the need for funding support to increase provider competency, service availability and accessibility, and the public knowledge and awareness of PC in rural areas. A holistic and tailored PC model that standardizes care delivery, referral and coordination, including family caregiver support programs, can improve care access. Future practice and research are warranted to implement and evaluate innovative approaches, such as a coordinated community-based approach, to the successful integration of PC in rural communities.

On the Security and Privacy Challenges of Virtual Assistants.

Since the purchase of Siri by Apple, and its release with the iPhone 4S in 2011, virtual assistants (VAs) have grown in number and popularity. The sophisticated natural language processing and speech recognition employed by VAs enables users to interact with them conversationally, almost as they would with another human. To service user voice requests, VAs transmit large amounts of data to their vendors; these data are processed and stored in the Cloud. The potential data security and privacy issues involved in this process provided the motivation to examine the current state of the art in VA research. In this study, we identify peer-reviewed literature that focuses on security and privacy concerns surrounding these assistants, including current trends in addressing how voice assistants are vulnerable to malicious attacks and worries that the VA is recording without the user’s knowledge or consent. The findings show that not only are these worries manifold, but there is a gap in the current state of the art, and no current literature reviews on the topic exist. This review sheds light on future research directions, such as providing solutions to perform voice authentication without an external device, and the compliance of VAs with privacy regulations.

Mental health and stigma in Saudi Arabia: a scoping review

PurposeStigma associated with mental health problems is widespread in the Kingdom of Saudi Arabia (KSA). Consequently, this may prevent many Saudi people from accessing the mental health-care services and support they need. The purpose of this study is to consider how stigma affects people needing to access mental health services in the KSA. To achieve this aim, this study reviews the knowledge base concerning stigma and mental health in KSA and considers specific further research necessary to increase the knowledge and understanding in this important area.Design/methodology/approachThis review examines the relevant literature concerning mental health stigma and related issues in KSA using the Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses frameworks. As a scoping review, it has used a systematic approach in literature searching. The results of the search were then thematically analysed and the themes were then discussed in light of the concepts of stigma and mental health.FindingsStigma around mental health impedes access to care, the nature of care and current clinical practice in the KSA. The voices of those with mental health issues in KSA are almost entirely unrepresented in the literature.Originality/valueThe review identifies that mental health stigma and cultural beliefs about mental health in KSA may act as barriers to accessing services. The voice of mental health service users in KSA remains largely unheard. If public discussion of mental health issues can increase, people’s experiences of accessing services may be improved.

What does safety in mental healthcare transitions mean for service users and other stakeholder groups: An open-ended questionnaire study.

BackgroundHistorically, safety mental health research has tended to focus on risks of homicide, suicide and deaths. Although wider safety issues are now recognized in regards to mental health services, the safety of mental health transitions, a key research and policy priority according to World Health Organisation, has not been explored.ObjectiveThe purpose of this study was to investigate perceptions of safety in mental health transitions (hospital to community) amongst five stakeholder groups.Design and settingAn online, international cross‐sectional, open‐ended questionnaire.ParticipantsThere were five stakeholder participant groups: service users; families/carers; mental health‐care professionals; researchers; and end users of research.ResultsNinety‐three participants from 12 different countries responded. Three overarching themes emerged: ‘individual/clinical’, ‘systems/services’ and ‘human, behavioural and social’ elements of safe mental health transitions. Whilst there was a great focus on clinical elements from researchers and healthcare professionals, service users and carers considered safety in terms of human, behavioural and social elements of transitional safety (ie loneliness, emotional readiness for discharge) and systems/services (ie inter‐professional communication).DiscussionSafety in mental health‐care transitions is perceived differently by service users and families compared to healthcare professionals and researchers. Traditional safety indicators for care transitions such as suicide, self‐harm and risk of adverse drug events are raised as important. However, service users and families in particular have a much wider perception of transitions safety.ConclusionFuture quality and safety research and policy should consider including a service user voice and consider integration of psychosocial elements in discharge interventions.

Community Work as Opposition

A number of tensions pertaining to social problems and human suffering become apparent when analysing community work in a Danish welfare setting. As a source for critical reflection, we discern some of these challenges, but also potentials, which relate not only to a Danish context, but to challenges in any highly institutionalized welfare system. Three community work social enterprises serve to exemplify the objectives of addressing social problems by fostering participation and empowerment. To enhance and include the voice of service users, the programmes attempt to cultivate human resources as opposed to perceived formalism and a subsequent diminishment of the potentials of community inclusion. The formalistic governmental agendas are perceived to be unable to appreciate the diversity of service users’ individual needs and social challenges, which produces conflicting prospects. Such a dichotomy between formalistic welfare practices and the ideals represented in the three enterprises offers a podium for users, professionals, policymakers and researchers to consider alternative expressions of community work, and how these can address social problems. We maintain that rapidly changing welfare models require an increased sensitivity to human suffering as a position embedded in the habitus and sociological imagination of community work. It is a source for reflection on the role of welfare arenas perceived as spaces in which service users ideally, based on their own social situation, can improve their social circumstances. It is an invitation to reflect on the potentials of community work in a diversity of cultures and practices.

Implementing choice-based models of social service: The importance of involving people who use services in reform processes

Abstract This article focuses on the opportunities and challenges of introducing choice-based models of social services. Research has found that these models often provide better outcomes and are cost-effective, but the pace of their introduction is generally slow. There are often very deeply held assumptions about the capacity of the people using these services and the potential for change within the existing social service system. Using institutional and social movement theory, the authors seek to explain these barriers to change. Drawing on the experience of supporting the national roll-out of choice-based models in Ireland, the authors propose a number of strategies to accelerate the introduction of these types of models into social services. The authors find that one of the key ways to accelerate reform and reduce transition costs is design processes which have the voice of service users at the centre of the reform process.

The service user voice in shaping mental health policy

Abstract Background Over the last 7 years CMH Malta provided holistic evidence for a mental health strategic framework with the regular input of patients, families, NGOs and civil society. Methods This evidence featured in published Annual Reports, conference presentations, bilateral meetings, and media interventions. The National Mental Health Strategy 2020-2030 was published in July 2019. CMH proffered advice, experience and supporting documents to the Strategy Team. 80% of the action points in the strategy reflect CMH recommendations. Results The philosophy of care should emphasise person-centred multi-disciplinary care. The primary health care system must be an effective gatekeeper providing mental health promotion and care in the community thus preventing hospital admissions. Acute psychiatric care must be provided within the acute general hospital setting with active support of A&E and 24/7 intervention services that deal promptly with emergencies. Transition of youngsters to adult psychiatry and of adults to old age psychiatry should be flexible. Community-based rehabilitation is required for Adult Psychiatry, Child/Adolescent/Youth Psychiatry, Old Age Psychiatry, Forensic Psychiatry and Learning Disability. Policymakers must provide care options for older persons with chronic mental disorders, safe settings for youngsters with severely challenging behaviour, and shelters for persons suffering from substance misuse who resist treatment or rehabilitation. Conclusions Implementation of the Mental Health Strategy requires substantial capital investment and new resources. Service re-engineering and synergy are necessary to avoid duplication and waste. Better complements of professionals must be available to provide alternative therapies to the current medical pharmacological model. Key messages Patients, families, NGOs and civil society are critical partners in strategy development. Action points and implementation plans must reflect service user views and advice.

Building knowledge for policy and practice based on service user and carer experiences: A case study of Scottish adult safeguarding research

Summary This article presents Scottish adult safeguarding as a case study to illuminate some challenges of building knowledge for policy and practice based on service user and carer voices. It draws on five of our own research projects that have evaluated implementation of Scottish adult safeguarding legislation and/or asked more exploratory questions about risk, safety and support. Findings We show how practical and ethical issues limited our more evaluative lines of inquiry. We then show how increasingly participative approaches led to studies that were more accessible and that connected more deeply with service users’ and carers' lives, but that also faced greater challenges in the translation of their findings back into the policy and/or practice environment. Applications We conclude with an argument for ongoing dialogue between policy-makers, professionals, service users and carers, researchers, educators and students about knowledge, its different forms and sources, its generation and its use.

Access to specialist community alcohol treatment in England, and the relationship with alcohol-related hospital admissions: qualitative study of service users, service providers and service commissioners.

Since 2012 England has seen year-on-year reductions in people accessing specialist community alcohol treatment, and year-on-year increases in alcohol-related hospital admissions. We examined perceived barriers to accessing specialist treatment, and perceived reasons behind hospital admission increases. We conducted focus groups (n = 4) with service users and semi-structured interviews (n = 16) with service providers and service commissioners at four specialist community alcohol services in England, which experience either high or low rates of alcohol dependence prevalence and treatment access. Themes and subthemes were generated deductively drawing upon Rhodes' risk environment thesis. Data were organised using the framework approach. Data reveal a treatment sector profoundly affected at all levels by changes implemented in the Health and Social Care Act (HSCA) 2012. Substantial barriers to access exist, even in services with high access rates. Concerns regarding funding cuts and recommissioning processes are at the forefront of providers' and commissioners' minds. The lack of cohesion between community and hospital alcohol services, where hospital services exist, has potentially created an environment enabling the reduced numbers of people accessing specialist treatment. Our study reveals a treatment sector struggling with a multitude of problems; these pervade despite enaction of the HSCA, and are present at the national, service provider and individual service level. Although we acknowledge the problems are varied and multifaceted, their existence is echoed by the united voices of service users, service providers and service commissioners.

Relational, ethically sound co-production in mental health care research: epistemic injustice and the need for an ethics of care

ABSTRACT Co-production and service user involvement are increasingly encouraged in mental health care research. However, power hierarchies in knowledge can affect the co-production of knowledge by stakeholders. Therefore, the purpose of this article is to deepen our understanding of the relational dynamics at stake in co-researching teams and larger groups of stakeholders involved in research. We reflect on a process of co-production in psychiatric emergency care and show the ethical responsibilities of researchers in dealing with the power dynamics. A collaborative reflection on the process of co-production shows that the voices of service users, who participated as co-researchers, were silenced, thereby reinforcing epistemic injustice. Ethics of care offered guidance for ethical reflection and ways to manage relational dynamics. Instead of ‘fight and flight’, the ‘tend and befriend’ option was fruitful for relational ethically sound co-production, leading to teams and stakeholders jointly reflecting on knowledge co-production. Relational reflexive work brings people together for solidarity, support, and advice.

New development: Expanding public service value to include dis/value

IMPACT For public service managers and policy-makers, value is now a common buzzword and its creation or production processes represent common approaches to service delivery. Increasing numbers of academic studies argue that public value is overly optimistic and premised on overly positive ideals of universal benefit. Two new terms are proposed in this article that both critique current approaches to public value and also expand the concept to reflect the complex reality of public service practice: dis/value and public service ethos. Public service ethos represents the idealism associated with the public value and dis/value accounts for public value relationships and experiences that fall outside of this. These terms are intended to further the conceptualization of value and also translate theoretical development into a language that both reflects and can be used in public service practice. ABSTRACT This article introduces two new terms to the public value lexicon: ‘public service ethos’ and ‘dis/value’. Both terms serve to progress the conceptualization of public value. ‘Public service ethos’ is used to refer to the prevailing assumption that the inclusion of service user voices in the delivery and improvement of public services creates individual and societal benefits (public value). ‘Dis/value’ refers to the public value relationships that fall outside of the public service ethos. Three service assemblages are used to exemplify this. These examples show that a theory–practice disjuncture is present, whereby the ‘public service ethos’ is not practicable based on its anthropomorphic focus and the consequent failure to recognize complexity. To overcome this, the authors draw on new materialist theory to reposition public value as a relational assemblage that can accommodate value in all combinations.

The experiences of people with severe mental health conditions participating in the Occupation Matters Programme: An interpretative phenomenological analysis

Introduction The Occupation Matters Programme is an occupational therapy intervention promoting recovery in people with severe mental health conditions, adapted from the Lifestyle Redesign© approach. With the increasing demand for mental health services and the United Kingdom’s current financial position, there is reason to research the Occupation Matters Programme. Method Interpretative phenomenological analysis provided a rich account of the experience of the Occupation Matters Programme, eliciting the service user voice. Four participants participated in semi-structured interviews following session 10 and at the completion of the 20-week programme. Data analysis followed the step-by-step interpretative phenomenological analysis guidelines, enabling themes to be identified that reflected participants’ experiences. Findings Three major themes were revealed: connecting with others; experiencing an opened-up world through a temporary project and finding a place in the world through a changing sense of self. Three participants described a temporary improvement in their mental health at the halfway point, which became more permanent by the completion of the programme. Conclusions This study suggests that the Occupation Matters Programme was influential in the participants’ recovery journeys and provides evidence for Wilcock’s Doing, Being, Belonging and Becoming framework. It encourages occupational therapists to concentrate on occupation-centred practice, occupational integrity and implementing all four aspects of Wilcock’s framework.

‘The silence’: examining the missing voices of disabled people in police custody

The role of the Appropriate Adult was established to protect the rights of suspects considered ‘vulnerable’ due to a number of miscarriages of justice during the 1970s. Appropriate Adult services are now a legal requirement in England and Wales for detained adults with mental health issues, learning disabilities or difficulties who have been detained in police custody. The aim of this project was to evaluate the extent and involvement of disabled adults who are or have been in police custody. The study concludes by suggesting the application of a social model approach within police custody, to meet the needs of service users and to avoid any miscarriages of justice. Points of Interest Appropriate Adult services are now a legal requirement in England and Wales for adults detained in police custody who have mental health issues, learning disabilities or difficulties The research explores the role of Appropriate Adult schemes across England and Wales in protecting the rights of disabled people in custody. This study examines whether disabled people’s voices are embraced in Appropriate Adult Schemes to improve services and to remove disabling barriers. This study discovered that service user voices were missing from every aspect of Appropriate Adult service provision. The findings suggest that in order to develop an effective criminal justice service for disabled people in custody, service user voices must be incorporated to develop a service which protects the rights of disabled people.

Affective spectrality in therapeutic space

Spaces for therapy and counselling are haunted spaces, spaces whose physical characteristics can manifest past inhabitation and cue connections to trauma. This paper explores findings from a research project which aimed to understand the perceptions of spatiality of individuals who self harm, and the role of the built environment in supporting therapeutic processes and experience. The data collection and analysis were designed to preserve the integrity of the voices of mental health service users who self harm and communicate their self-reported spatial perceptions. Comparisons between lived/embodied experiences, analysis of intrinsic properties of accounts and exploration of therapeutic sites underpinned the findings relative to the psycho-cognitive geographies of experiences. This paper explores how individuals who self harm experience particular connections between physical and psychological spaces, how their self-reported encounter with interior space is overlaid with the inhabitation of past occupants and memories, which reduces opportunities for access to the therapeutically supportive dimensions of the space, and exercises in self production. This paper first defines ‘haunted space’ ‘trace’ and ‘trauma’; secondly reviews existing literature on affective spectrality, atmospheres and materialites; thirdly discusses the methods used in the study reported in this paper; and finally, explores the relationships between sensory encounters, affective traces, signifiers, felt architecture and the therapeutic function for which spaces are designed. The paper concludes with implications for future research and practice.