Voices Of Service Users Research Articles

Informed outrage: tackling shame and stigma in poverty education in social work

ABSTRACTThe experience of poverty as shameful is felt by some people living in poverty due to the internalisation of stigmatising neo-liberal discourses which construe poverty as the consequence of individual failings of effort, competence or morality. A critical response requires an analysis of poverty as primarily caused by structural factors, as without this critical perspective, social workers can become complicit with a responsibilisation agenda based on stigma. Many social work students were raised in the neo-liberal era where the post-war consensus on welfare had diminished and thus may be blind to the assumptions embedded in current discourse about people in poverty. Increasing inequalities in many western countries may mean infrequent contact between people from different class backgrounds and exposure to the realities of poverty. To address the potential risk of social workers reinforcing poverty stigma we propose teaching which explicitly addresses the discrepancies between a structural analysis of poverty and current individualistic discourses that produce stigma. Suggested methods include using complex case studies, and bringing service user voices into the classroom, and the use of the arts, alongside exploring how moral panics are created by regimes of shame, surveillance and control which underpin welfare policy.

Recovery from Mental Illness: The Post-modern Perspective

Twenty-first century is witnessing dramatic changes in modern psychiatry and a monologue of reason about madness has given way to real dialogues between various stake holders, including patients, represented by service user organisations [1–3]. The recovery model represents an approach, which focus much more than symptom resolution and emphasises resilience and control over problems and life, which is achieved in a holistic manner with the help of therapist along with relatives, friends and community, with a strong hope that people with mental illness can have a meaningful life and can set their own goals for their life [1]. Post-modernism is a concept taken its roots from many disciplines including linguistics, literature, architecture, philosophy and science [4]. The foundations of postmodern thoughts lie in its reactions to and rejection of certain aspects of modern philosophy. It rejects epistemological assumptions, refutes methodological conventions, resists knowledge claims, obscures all versions of truth, and dismisses policy recommendations. Psychiatry has qualities consistent with a postmodern worldview like several different theoretical models to understand and explain the mental experiences and behaviour of patients, and its interactions with value laden disciplines such as philosophy, law, psychology and social sciences [4]. In its extreme formulation postmodernism is revolutionary and radically dismisses modern psychiatry, but its moderate proclamations encourage substantive redefinition and innovations in psychiatry. Such an intellectual challenge has given birth to post-modern psychiatry or ‘‘post-psychiatry’’, which means an end to the ‘‘monologue of reason about madness’’ and an explicit attempt to redefine a discourse about meanings, relationships and values in psychiatry as primary [4]. Postpsychiatry differ from anti-psychiatry in that it neither propose new theories about madness nor seek to replace the medical techniques of psychiatry with new therapies. Rather, it opens up spaces in which other perspectives can assume validity and brings up voices of service users and survivors to the centre stage [5]. There is no single definition of the concept of recovery for people with mental health problems. Post-psychiatrist had taken up recovery concept and in many ways enriched it by discussing from various dimensions. One of the major philosophical issues with modern psychiatry, according to post-psychiatrists, is the problems of dualisms exemplified by Jaspersian phenomenology and biopsychosocial model, where experiences are treated in separate realms. Heideggerian hermeneutic phenomenology proposed by postpsychiatrists sees human experience as being indissolubly tied to culture and narrative, with temporality and embodiment, resulting in negating separate biological, psychological or cultural worlds that exist outside human experience and acknowledging the complexity and integrity of human experience [6]. From the above perspective, recovery can be discussed in multiple dimensions. The most commonly accepted three meaning of recovery are the restoration of a person to a healthy or normal condition after being ill, recovery of something lost or taken away and procedure of gaining possession of some property or right by a legal verdict [6]. The major limitation with first meaning, the major meaning in modern psychiatry, is that not all who experience mental illness accept that they are ill nor they consider their experience as abnormal. Hence, recovery from the perspective of such & N. A. Uvais druvaisna@gmail.com

A Mentor’s PATH: Evaluating how service users can be involved as mentors for social work students on observational practice placements

This paper will explore the experience of service user involvement in social work education, examining the challenges of involving ‘seldom heard’ service user voices. Over a six month period, a group of four people with learning disabilities were supported and enabled to take on an assessment role as Mentors for four first year BA(Hons) Social Work students at the University of the West of Scotland. The article will focus on an evaluation of this pilot project and will outline the partnership work between the university and placement agency in planning, preparing, and supporting the mentors to carry out their role in supporting students on placement and assessing their communication skills, value base and readiness to practise. Central to the planning process was the use of PATH – a person centred planning tool. The evaluation will detail the crucial role played by the support staff in the placement agency, without whom this project would not have been possible.The evaluation was carried out using a mixed methods approach and embraced the principles and values of participatory action research. The evaluation provides insight into the experiences of the mentors, the students and support staff, and demonstrates that with the right support in place, and with commitment to thorough planning and preparation, seldom heard service users can be meaningfully involved in social work education.

Does today's service user influence mental health policy?

Sarah Yiannoullou, Managing Director of the National Survivor User Network (NSUN) outlines how NSUN ensures the service user voice is heard

Exploring the lived experience of splinting for the prevention and correction of contractures in adults with neurological conditions

Background: This study was undertaken as part of the development of evidence based national splinting guidelines for the prevention and correction of contractures in adults with neurological dysfunction. The term splinting describes the process of applying a prolonged stretch through a range of devices such as a splint or cast. Contracture formation is complex, and are a common secondary complication of paresis andweakness following nervous system damage. As contractures can limit active function and decrease the ease of care or self-care (passive function), splints and casts can be used as part of an overall goal directed rehabilitation and management programme. However an on-going debate remains as to the apparent effectiveness of splinting as a stretch intervention. Purpose: As there is a paucity of knowledge about the experience of people with neurological conditions using splints or casts, this study aimed to explore what is was like to be the recipient of splinting. Given splinting is an area with clinical uncertainty, the need to hear the voice of service users was an essential component in the development of practice clinical guidelines for therapists. Methods: People who were current or recent users of splints or casts were purposively recruited from local support groups and charity organisations. Volunteers took part in semi-structured interviews to explore the lived experience of splinting for the correction or prevention of contractures; all interviews took place in the participant’s home. Data were audio-recorded, transcribed verbatim, and transcriptions checked against the original recordings. Data were analysed thematically. Another member of the research team independently reviewed the process of coding, first theme identification and the development of the overarching themes, supporting the rigour and transparency of the process. Results: Ten people with a neurological condition (stroke n= 6, brain injury n= 3, multiple sclerosis n= 1) took part in the study. Two participants with communication difficulties chose to include their carers, who were also consented, in their interview.The timepost-insult for the participants varied from 9months to 14 years. Wrists, hands and ankles were the most common joints for splinting. Splinting was undertaken for active and passive function. Five main themes emerged from the data: Sensemaking through goals; Splints in the real world;Looks aren’t everythingbut theydomatter;Motivation and support and the Influence ofRehabilitation Professionals. Conclusion(s): The findings from this study show the importance of the user perspectives in defining the construct of what is an effective intervention. While the experience of splinting could be described for some participants as a ‘double edged sword’, there were nonetheless benefits on a number of levels. These outcomes went beyond the oftused measure of success of range of motion. Service users described being concerned with functional outcomes, active or passive, and with wider participation in society. Implications: Given the multifaceted nature of splinting as a complex intervention,many factors and questions remain about practice and further research is required. The importance of listening to the experience of service users is evident from the insights shared as part of the guideline development process.

The New York Statement on the Evolving Definition of Practice Research Designed for Continuing Dialogue

This Statement on Practice Research is a work in progress. It emerges out of deliberations from three international conferences on defining and operationalizing practice research. It seeks to capture both a process and outcome in which practitioners, researchers, service users, and educators collectively engage in a negotiated process of inquiry. One of the goals of this form of research is to place equal emphasis on improving practice and improving services. Practice research also seeks to rebalance the power relations in terms of integrating the voices of service users, service providers, service researchers, and instructors preparing future and current service providers. This third statement emerges out of the most recent international conference in New York City (2012) and continues the construction of the social science and social philosophy foundation of practice research. It seeks to expand the dialogue on practice research to include more international voices while also searching for linkages with the evolving process of defining the mixed methods approach to evidence-informed practice. This Statement provides a platform for the 4th International Conference on Practice Research planned for Hong Kong in 2017.

From admission to discharge in mental health services: a qualitative analysis of service user involvement.

User involvement and recovery are now widely used terms within the mental health policy, research and practice discourse. However, there is a question mark about the impact these ideas have in everyday practice. Of interest is the degree of involvement in key transitions of care. In particular, admission to and discharge from acute inpatient mental health wards. To explore the nature of service user involvement in the admission and discharge process into and out of acute inpatient mental health care. A qualitative study using focus groups. One acute, inpatient mental health ward was the focus of the study. Seven uniprofessional focus group interviews were conducted with ward staff, community staff and service users (total number of participants = 52). Conventional, thematic qualitative techniques were used to analyse the data. The data analysed and presented in this article relate to the loss of the service user voice at the key transition points into and out of acute inpatient care. Due to the lack of resources (inpatient beds and community care follow-up), the role service users could play was diminished. In their narratives, clinical staff associated the person with the process and used language which dehumanized the individual. Service users experience numerous care transitions into and out of hospital. As there is the potential for these encounters to have a lasting negative effect, the importance of ensuring service users have a voice in what is happening to them is crucial.

Breast feeding a sick child; can social media influence practice?

Breast milk represents optimum infant nutrition. The World Health Organization’s recommendation that babies should be exclusively breastfed for a minimum of 6 months (Kramer & Kakuma, 2001) remains unchanged in its second decade (Kramer & Kakuma, 2014), which is acknowledged in industrialized countries by successive policies and guidelines for the promotion and care of breastfeeding in children’s wards and departments. The known protective influence of breast milk in preventing the onset of disease in later life is of particular import for any sick infant, but the user voice as represented by Helen Calvert’s Twitter campaign @heartmummy#hospitalbreastfeeding has united service user and professional voices to call for improved breastfeeding support in pediatric care.Although breastfeeding rates in industrialized countries drop markedly in the first 6 weeks, breastfed babies with cardiac conditions benefit from better oxygen saturations, faster weight gain, and shorter hospital stays. Unwell babies are most in need of the benefits of breast milk. However, families and staff overcome physical barriers to the initiation and maintenance of breastfeeding, including lack of space, privacy, and separation of the maternal-infant dyad. Many women are motivated to breastfeed or express milk but are reluctant to approach health professionals for help and advice. Despite robust evidence and sound guidelines and policies, breastfeeding knowledge and experience amongst Child Health professionals is often inadequate and leaves them unable to support families.While @heartmummy#hospitalbreastfeeding highlights the issue, Child Health strategy needs investment in young people’s long term health by increasing staff skills and focusing on breastfeeding as a core therapeutic intervention. Lactation Consultants could offer training, disseminate good practice, and address the needs of breastfeeding families.

Addressing the long-term impacts of aphasia: how far does the Conversation Partner Programme go?

Background: Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Qualitative research methods are increasingly used to capture the complexity of service users’ experiences of health and illness; however, the voice of service users with aphasia continues to be limited in published healthcare literature. This participatory research study included people with aphasia as co-researchers in the exploration of aphasia and a Conversation Partner Programme (CPP).Aims: To describe participants’ insider (emic) experiences of (1) aphasia and (2) a CPP.Methods & Procedures: Following a pilot study, the generation and analysis of qualitative data involved a Participatory Learning and Action (PLA) approach based on the interpretive paradigm. Using purposeful sampling, participants included people with aphasia (n = 5) who had experience of the CPP. Through (n = 5) 3-hr data generation sessions across 12 months using PLA techniques—Flexible Brainstorming and Card Sort—participants’ unique perspectives of aphasia and the CPP were recorded. The principles of thematic analysis guided the co-analysis of data with participants. To explore transferability of findings, data generated in Ireland were presented to an international interstakeholder group in Connect UK.Outcomes & Results: Participants identified eight themes describing the lived experience of aphasia including (1) Back to Pre-School, (2) Tiredness, (3) It’s Like in Prison, (4) Emotions, (5) Not Able to Talk the Words, (6) Escape, (7) Changing and Adapting, and (8) Family. Five additional themes were co-generated capturing the value of the CPP. It appeared that because the CPP training and programme acknowledged the expertise of individuals with aphasia and provided opportunities for conversations with unfamiliar people, the negative feelings of communicative incompetence described in “Back to Pre-School” and “Not Able to Talk the Words” were minimised. Feelings of marginalisation captured in “Escape,” “It’s Like in Prison,” and “Emotions” were reported to be reduced through the social aspects of the programme.Conclusions: Aphasia changes communication situations and interpersonal relationships often resulting in psychosocial impacts and disempowerment. The CPP contributed to promoting successful communication and reducing social exclusion. Participants reported transformative experiences related to identity, independence, and confidence. These outcomes are encouraging as marginalisation and vulnerability to “secondary handicap” are recognised long-term risks of aphasia. Findings will be of interest to those living and working with people with aphasia and to those designing, delivering, and participating in CPPs.

Making Sense of HUSK: Practice Implications for Social Change Initiatives

As an exemplar of bottom-up progressive social experimentation, HUSK provides opportunities to examine how innovative practice is supported and challenged in bureaucratic settings. In this analysis the author uses a sensemaking lens to identify critical issues and questions for those seeking to promote progressive change initiative in social welfare systems. Findings identify essential organizational and managerial supports needed to support service user voice and participation and reinforce the importance of reflexivity in practice and research.

Music Therapy in Mental Health: Practice, Theory, Research, and Professional Perspectives

I am honored to have the opportunity to present this volume of Music Therapy Perspectives with a special focus on music therapy in mental health care. In envisioning such a volume, the possibilities appear endless; however, the focus of this volume offers a microcosmic but expansive view encompassing four areas: professional perspectives, practices, the voices of service users, and research.Mental Health Practice Today: Opposing IdeologiesWithin an expansive view of the field of mental health in 2015, the tension of polarities is a theme that is often encountered. Mental health care in the United States has been strongly impacted by divergent, sometimes conflicting, ideologies that have affected the nation socially, culturally, and politically. This is evident in healthcare overall, but particularly in mental health care, where the effects are evident on a structural level, with respect to reduced access to affordable mental health care (National Alliance on Mental Illness ([NAMI], 2015); in research, where pharmaceutical companies have significantly reduced funding investments for mental health disorders while increasing funding in other health areas (Hyman, 2013); and with regard to paradigms- namely, the empirical medical model versus the humanistic approach (Kogstad, Ekeland, & Hummelvoll, 2011).A discussion of how ideologies have affected both the provision of care and investment in pharmaceutical research is beyond the scope of this introduction, though they are important topics and may be of great interest to music therapists. While these factors have a strong impact on our work, we are at the same time intimately engaged with the daily struggles and victories of persons with mental health disorders, and our published works reveal how we have become adept at treating clients effectively within these challenging, and sometimes oppositional, approaches.The Recovery Model in Mental Health Practice and ResearchRegardless of the paradigms we prefer to use to guide our work, or the tensions that may exist between our personal proclivities and those of the institutions in which we work, the same concerns underlie our collective practice and research. The concern we share is how we can most effectively use the various facets of music experiences and the relationships we establish through them (Bruscia, 2014) to help our clients improve their quality of life, develop their potential, and value their unique personhood in spite of the stigma that is part of the texture of their daily lives (Link, Struening, Neese-Todd, Asmussen, & Phelan, 2014).Some research has been conducted from the stance of the recovery model approach, which appropriately locates expert knowledge with the persons who are recipients of these services. This research has provided some insight into the needs of persons with mental health challenges from their perspective. Kogstad et al. (2011) conducted a qualitative study on the narratives of recovery of persons with mental health problems and discovered that the service users challenged fundamental beliefs about what constitute effective and necessary treatment (p. 479). The authors also noted that Strauss (2005, as cited in Kogstad et al., 2011) questioned why there was a resistance in the field of psychiatry to include research that focused on recovery and that favored the service users' views. The authors theorized that reductionist and symptomoriented views of mental disorders privileged by the medical profession are challenged by orientations that emphasize working toward the resolution of existential dilemmas, which are essential daily considerations for persons with mental health concerns.In the recovery approach, humanistic or client-centered and existential models are well suited to address the resolution of existential dilemmas, as are the more recent methods and techniques that have evolved from these approaches, such as motivational therapy (Miller & Rollnick, 2009). …

The transformative potential of the arts in mental health recovery – an Irish research project

Background: This article is based on the Arts+Minds research project which investigated the experience of arts participation for mental health service users in Cork, Ireland, and the potential of integrating the arts into mental health care. Methods: Based on the principle of user-controlled definitions of recovery, the voice of service users was central in this research. The authors used participatory observation methods and conducted qualitative interviews with project participants (service users, artists and mental health staff) to explore the impact of arts participation on service users and service structure and culture. Results: The research demonstrated the transformative potential of the arts to create environments conducive to recovery through empowerment, connection-making, confidence-building, hope, story-telling and story-making. Conclusions: Moving beyond the general agreement on the positive contribution of the arts in mental health care, this article highlights some of the challenges of introducing creative forms of engagement and expression in traditional biomedical settings. It is argued that a meaningful partnership between the arts sector and mental health services is not just a technical measure but requires a radical shift in the way we understand, respond to and engage with human distress.

Vocational rehabilitation in mental health services: evaluating the work of a social and therapeutic horticulture community interest company

Purpose – The purpose of this paper is to report on an action inquiry (AI) evaluation of the Natureways project, a time-limited collaboration between an NHS Trust Vocational Service and a voluntary sector horticulture-based community interest company (CIC). Design/methodology/approach – Natureways produced positive employment outcomes and an AI process – based on co-operative inquiry with trainees, staff, and managers – explored how these had been achieved. Findings – Natureways’ efficacy was based on features of the setting (its supportiveness, rural location, and workplace authenticity), on its embeddedness (within local care-planning pathways, the horticultural industry, and the local community), and on effective intersectoral working. The inquiry also generated actionable learning about creative leadership and adaptability in the changing landscape of service provision, about the benefits of the CIC's small scale and business ethos, about the links between trainees’ employability, social inclusion and recovery, about horticulture as a training medium, and about the role of AI in service development. Practical implications – The inquiry highlights how an intersectoral CIC can be an effective model for vocational rehabilitation. Social implications – Community-embeddeness is an asset for mental health-orientated CICs, facilitating social inclusion and recovery. Social and therapeutic horticulture settings are seen to be conducive to this. Originality/value – This case study suggests that AI methodology is not only well-suited to many practitioners’ skill sets, but its participatory ethos and focus on experiential knowledge makes it suitable for bringing a service user voice to bear on service development.

In the shadow of Rashomon: pursuing polyphony in practice case studies within the Australian social security environment

An evidence-based turn in social welfare environments has meant that traditional case accounts and narratives of welfare practice experiences are liable to be disparaged as unscientific and anecdotal. From a critical perspective, such narratives also risk de-contextualising power and organisational dynamics and providing a snapshot of a ‘case’ rather than unearthing broader lived experience. Research which focuses on the voices of service users, or narrates the background struggles of street-level workers has contributed to a more complex understanding of practice. However, even these approaches are vulnerable to accusations that they neglect other voices, particularly of managers and supervisors whose ‘hidden hand’ in development, training and support helps frame practice. Conceptual developments around dialogue and network practices which have emerged over the last two decades, particularly in the Nordic context, have stressed the role of multiple perspectives and ‘polyphony’ to understanding the complexity of social work and welfare practice. This paper describes an approach to building polyphonic research accounts of practice in an Australian setting, bringing together diverse perspectives and situating these in a local historical context. Developed for a study of reforms to interview and referral practices in the Australian social security environment, the approach traced the initial training of welfare staff, ongoing support from managers and social workers, and day-to-day encounters with clients. A case example is provided from the study which demonstrates the re-framing of case study ‘story’ into a complex multi-layered account of practice.

LAY FORUMS IN CHILD WELFARE

Dealing with child abuse presents many challenges to both policy makers and service providers internationally. Societies have responded differently to this issue (Gough, 1996). In Western countries two broad streams have emerged: one adversarial, the other consensual. The “child protection” approach, common in countries such as the UK, USA, Canada and Australia, has been criticised as being punitive and adversarial, typically marginalising the voice and experience of service users (Merkel-Holguin, 2004; Waldegrave, 2006; Waldfogel, 1998). A more collaborative approach to child welfare is captured in the “family services” and “community care” models, respectively typical of Europe and of aboriginal communities in “developed” countries. It should be noted that the limited literature on child welfare systems operating in “developing” countries implies that services mostly conform to a “child protection” approach as they tend to be residual, deficit based and treatment oriented, and are heavily skewed towards residential care options (Pilotti, 1999; Stockholm University, 2003; Xiaoyuan & Xioaming, 2003). Indigenous helping approaches co-existing with these systems have typically been overlooked. The “community care” model hence constitutes the only child welfare model that formally articulates indigenous approaches.

How recovery oriented are mental health services in Hong Kong? Snapshots of service users' perspectives

Today we are witnessing a slow paradigmatic shift in Hong Kong's mental health services to becoming more recovery oriented, the context, meaning and process of which, however, is highly individualised as well as culturally sensitive. Therefore, it is imperative to gather the voices of service users. This paper serves to capture the views of a group of service users on the changes they have seen and the ongoing challenges in mental health services in Hong Kong; and to compare the Hong Kong experience with international experience with a view to reflecting on the directions for future development.

Mental health practitioners' reflections on psychological work in Uganda: exploring perspectives from different professions

The Butabika-East London Link collaborated with Ugandan mental health services to train mental health professionals (psychiatric clinical officers, ‘PCOs’, and clinical psychologists and psychiatrists, ‘Core Group’) in psychological therapies. The aims of this research were to investigate how professionals were applying and adapting psychological therapies to the Ugandan setting and to gain ideas to inform future training. Focus groups were used to explore the PCO's (N = 13) and Core Group's (N = 8) thoughts. Recordings were transcribed and thematically analysed. Themes identified were: issues affecting psychological therapy provision; cultural adaptations; voices of service users; and training. Different professional groups share similar concerns about implementing psychological therapies in a country where psychological services are just emerging. Future directions are suggested.

Exploring maternal perinatal mental health using a blended learning package

This paper presents and discusses a collaborative midwifery curriculum development involving service users and academic staff, focusing on maternal perinatal mental health. An overview of contemporary drivers for service user involvement in midwifery care, practice and education and the significance of maternal perinatal mental health are highlighted to set the context for the educational development. The potential advantages and challenges of service user involvement in the pre-registration midwifery curriculum are outlined. The authors’ response to these challenges, through the process of initiating, implementing and evaluating a blended learning package is discussed. At the heart of this blended learning activity is the facilitated narratives of two service users, interspersed with student-focused reflective and analytical activity to develop an appreciation of a wide range of evidence, including practice experiences, theory and literature. This partnership approach to developing teaching materials for the pre-registration curriculum is advanced as a means to ensure the service user voice becomes central to the pre-registration midwifery curriculum.

The Health and Well-being of Service User and Carer Educators: a Narrative Enquiry into the Impact of Involvement in Healthcare Education

Service user and carer involvement is increasing in health and social care educationas a result of UK policy directives and Professional Statutory and Regulatory Body requirements. The study aimed to elicit the accounts of service user and carer educators' experiences in practice-based healthcare education in the UK. The overall aim was to illustrate the impact this has had on their health and well-being. A narrative inquiry approach was adopted in order to give a clearer and stronger voice to service users and carers by making their experience the primary focus of enquiry.Narratives were collected from five service users and carers who had extensive experience of involvement in healthcare education. The individual narrative material obtained was distilled into key points following a naturalistic perspective, ensuring that the findings and final story were a re-presentation of the narrator's experience.Participating in the research enabled the service users and carers to articulate specifically how involvement had positively affected their health and well-being. An additional outcome included the personal artefacts that can be utilised in teaching and learning in order to bring the service user and carer voice to life.This study contributes to the emerging knowledge and understanding that service user and carer involvement in health education can be a truly collaborative, enriching experience,producing profound personal change, with improvements in health and well-being. Effective involvement is dependent upon appropriate support networks whereby service users and carers develop connections with staff and other service users and carers that result in a sense of belonging.

Working together – innovative collaboration in social care research

This article reviews literature to provide context for a reflective narrative on a collaborative research project undertaken by disabled people, practitioners and academics. This approach required reconsidering many aspects of methodology and practice as the research relationships are altered. The article reflects on how the collaborative and participatory approach was developed and sustained and how it impacted on the research process and its outcomes. The article explores how the group of people worked together on a complex large-scale research project to bring the voices of service users and other key players together in a discussion about social care. The article is written by one of the academic partners and draws on consortium documents and reflections from other consortium members provided for the article.