Views Of Service Users Research Articles

Selecting outcome measures in mental health: the views of service users

Background. Little is known about service users' views of measures used to evaluate treatments in mental health.Aims. To identify the views of people with psychosis and affective disorder about the relevance and acceptability of commonly used outcome measures.Methods. Twenty-four widely used outcome measures were presented to expert groups of service users. Nominal group methods were used to develop consensus about the appropriateness of each measure. Comments made by service users about how outcomes should be assessed were also recorded.Results. Group members expressed concern about the ability of some outcome measures to capture their experiences. Patient-rated measures were assessed as more relevant and appropriate than staff-rated measures, and the need to examine negative as well as the positive effects of treatments was emphasised. Specific concerns were raised about some widely used measures including the Global Assessment of Functioning and the European Quality of Life scale.Conclusions. We consider it essential that service users' views are taken into account when selecting measures to evaluate treatment outcomes. Providing insight into views of users of mental health services, our findings serve as a starting point for discussion.

Developing the clinical components of a complex intervention for a glaucoma screening trial: a mixed methods study

BackgroundGlaucoma is a leading cause of avoidable blindness worldwide. Open angle glaucoma is the most common type of glaucoma. No randomised controlled trials have been conducted evaluating the effectiveness of glaucoma screening for reducing sight loss. It is unclear what the most appropriate intervention to be evaluated in any glaucoma screening trial would be. The purpose of this study was to develop the clinical components of an intervention for evaluation in a glaucoma (open angle) screening trial that would be feasible and acceptable in a UK eye-care service.MethodsA mixed-methods study, based on the Medical Research Council (MRC) framework for complex interventions, integrating qualitative (semi-structured interviews with 46 UK eye-care providers, policy makers and health service commissioners), and quantitative (economic modelling) methods. Interview data were synthesised and used to revise the screening interventions compared within an existing economic model.ResultsThe qualitative data indicated broad based support for a glaucoma screening trial to take place in primary care, using ophthalmic trained technical assistants supported by optometry input. The precise location should be tailored to local circumstances. There was variability in opinion around the choice of screening test and target population. Integrating the interview findings with cost-effectiveness criteria reduced 189 potential components to a two test intervention including either optic nerve photography or screening mode perimetry (a measure of visual field sensitivity) with or without tonometry (a measure of intraocular pressure). It would be more cost-effective, and thus acceptable in a policy context, to target screening for open angle glaucoma to those at highest risk but for both practicality and equity arguments the optimal strategy was screening a general population cohort beginning at age forty.ConclusionsInterventions for screening for open angle glaucoma that would be feasible from a service delivery perspective were identified. Integration within an economic modelling framework explicitly highlighted the trade-off between cost-effectiveness, feasibility and equity. This study exemplifies the MRC recommendation to integrate qualitative and quantitative methods in developing complex interventions. The next step in the development pathway should encompass the views of service users.

Why it is crucial to involve families in all stages of childhood disability research

Rosenbaum considered the pros andcons of partnerships between researchers and families wherethe families have greater power to influence the researchagenda and how research studies are designed. We were con-sulted when the editorial was being written and directed Pro-fessor Rosenbaum to relevant references on how public andpatient involvement is evolving in the UK. We write to furtherthe argument and express our strong view that it is crucial toinvolve families of disabled children, meaningfully, in allaspects of research. We also suggest that it is vital that serviceproviders are involved in this partnership, including cliniciansand those responsible for commissioning services. We set outthe theoretical arguments and describe our experiences in pur-suing such an approach. Our aim is to promote the involve-ment of families in childhood disability research. We viewfamily involvement as one of the most important contempo-rary issues in producing research that is relevant to improvingthe health and well-being of disabled children and their fami-lies.

THE THIRD SECTOR, USER INVOLVEMENT AND PUBLIC SERVICE REFORM: A CASE STUDY IN THE CO‐GOVERNANCE OF HEALTH SERVICE PROVISION

The ‘modernization’ of British public services seeks to broaden public sector governance networks, bringing the views of third sector organizations, the public and service users (among others) to the design, management and delivery of welfare. Building on previous analyses of the contradictions generated by these roles, this paper draws on longitudinal qualitative research to enunciate the challenges faced by one third-sector organization in facilitating service user influence in a UK National Health Service (NHS) pilot programme, alongside other roles in tension with this advocacy function. The analysis highlights limits in the extent to which lateral governance networks pluralize stakeholder involvement. The ‘framing’ of governance may mean that traditional concerns outweigh the views of new stakeholders such as the third sector and service users. Rather than prioritizing wider stakeholders' views in the design and delivery of public services, placing third sector organizations at the centre of governance networks may do more to co-opt these organizations in reproducing predominant priorities.

Narrative social work: conversations between theory and practice

This paper begins by reviewing the current situation in social work practice. It is contended that much of the literature around social work consists of diverse models of practice that urge social workers to take up various theoretical positions. Equally, social workers are often encouraged to listen to the views of service users. In this complexity, it is often difficult for social workers to know which approach to take. This paper goes on to propose a narrative-based approach to social work practice. Narrative social work is defined as a conversation between theory and practice, which can lead to development in both social workers and service users. An example from the lead author's practice is used to outline the model in action. The paper concludes with some comments about the values inherent in narrative based social work.

“Well it's like someone at the other end cares about you.” A qualitative study exploring the views of users and providers of care of contact-based interventions following self-harm

Objective We investigated the views of service users and staff regarding contact-based interventions (e.g., letters, telephone calls or crisis cards) following self-harm. Method Self-harm patients recently discharged from an emergency department were selected using purposive sampling ( n=11). Clinical staff from relevant service areas and voluntary staff took part in a focus group and individual interviews ( n=10). Interviews were transcribed and thematic analyses were conducted using methods of constant comparison to ensure that emergent themes remained grounded in the data. Results Most service users and staff participants identified the period of time directly after discharge as the time of greatest need. A contact-based intervention was viewed by service users as a gesture of caring, which counteracted feelings of loneliness. Delivery by mental health specialists was preferred, initially by phone, but letters were considered helpful later. The intervention should be both genuine in delivery and linked to current services. Potential barriers included means of accessing the service and threats to privacy. Conclusion The findings suggest that an appropriate design for an intervention might be the provision of an information leaflet, telephone calls (soon after discharge), then letters (offering continuity of contact). Aspects of value and concern expressed by service users should be helpful to clinicians and service providers.

Cremation Services upon the Death of a Companion Animal: Views of Service Providers and Service Users

AbstractThere is no systematic research on the rites and rituals associated with companion animal death in modern Australian society. Three cremation service providers were interviewed and asked to consider which caretakers have their companion animals cremated. Seven people who had recently had a companion animal cremated were then asked about their views on the process. Five interrelated themes emerged from the two data sets about who uses cremation services for companion animals: “Everyone uses companion animal cremation services”; “People who consider the companion animal as a family member, as a child”; “People who want memorials for their companion animals”; “Grieving people”; and “People who seek compassion and social support.” With scant recognition of the impact of companion animal death and the role of rites and rituals in facilitating the grieving process, further research in the area is needed, including into attachment as a possible mediator.

‘Like walking on eggshells’: service user views and expectations of the child protection system

This paper reports on a study of service users' views on Irish child protection services. Qualitative interviews were conducted with 67 service users, including young people between 13 and 23. The findings showed that despite refocusing and public service management reforms, service users still experience involvement with the services as intimidating and stressful and while they acknowledged opportunities to participate in the child protection process, they found the experience to be very difficult. Their definition of ‘needs’ was somewhat at odds with that suggested in official documentation, and they viewed the execution of a child protection plan more as a coercive requirement to comply with ‘tasks’ set by workers than a conjoint effort to enhance their children's welfare. As in previous studies, the data showed how the development of good relationships between workers and service users could compensate for the harsher aspects of involvement with child protection. In addition, this study demonstrated a high level of discernment on the part of service users, highlighting their expectation of quality standards in respect of courtesy, respect, accountability, transparency and practitioner expertise.

Advocacy for parents and carers involved with children's services: making a difference to working in partnership?

This paper explores findings from the evaluation of a scheme providing direct advocacy to parents where there were concerns about their ability to provide safe care for their children. The evaluation explored the views of service users, social workers and conference chairpersons and found general agreement that the advocacy scheme contributed positively to the process of working in partnership. This is of interest given research findings which suggest that working in partnership is particularly difficult in cases involving child protection issues. However, it is noted that there appears to be little political will to develop advocacy schemes for parents in the UK, and this is of concern given the lack of supports available to them to navigate a complex and often intimidating system.

Familienhebammen

Early intervention appears to be effective in terms of primary prevention for infants born to vulnerable families. Family midwives increasingly provide support for these families during the first year of life. The study investigates acceptance, availability, cooperation among providers and satisfaction of the clients. Health promotion for mothers and their infants is the overall goal of the program. Within a design of qualitative interviews and/or standardized questionnaires a sample of 67 families, 11 family midwives, 9 providers in other professions, 50 counseling services and 7 hospitals were involved. The results show that both acceptance and availability of family midwives ranked high within the views of service users. Health promotion, with a focus on the health of babies, was named as special trait of the support given by family midwives, associated with psychosocial support. A wide range of maternal needs and different forms of support received by the mothers was reported. Case control studies should follow.

‘Like waking up in a Franz Kafka novel’: Service users' experiences of the child protection system when domestic violence and acrimonious separations are involved

The challenges that arise in respect of child abuse reports made in the context of domestic violence and/or acrimonious separation have been the subject of recent academic discussion. This paper adds a service user perspective to the debate and reports on the findings from a study conducted in the Republic of Ireland. In addition to the previously established evidence about such cases, it demonstrates the level of powerlessness and frustration experienced by families who found it difficult to have their needs heard or met. It also illustrates the very detrimental emotional impact on children and parents who frequently encountered indifference as well as insensitive and gendered responses from child protection staff. The findings indicate that mainstream statutory child protection services do not have the capacity to deal with these complex cases, and advocates the adoption of alternative approaches. Importantly, the study demonstrates the necessity to pay attention to the views of service users in developing an appropriate response.

Match or Mismatch: Use of the Strengths Model with Chinese Migrants Experiencing Mental Illness: Service User and Practitioner Perspectives

The strengths model assists service users and mental health practitioners to identify individual and environmental strengths and to secure resources to facilitate integration into the community and improve quality of life. Interventions are based on goals determined by the person with the mental illness and include support in accessing resources required to achieve goals. Aim: The study aimed to explore the use of the strengths model as a recovery intervention with Chinese people with mental illness in New Zealand. Method: This study was a qualitative study using individual interviews and focus groups to explore the views of Chinese service users, significant others, and health practitioners who have experience in using the strengths model. Analysis: Data were analyzed using a general inductive approach to identify key themes relevant to the research objectives. Results: The focus on personal and collective strengths and pragmatic approach adopted by the strengths model were regarded by participants as di...

Improving services for individuals with a dual diagnosis: A qualitative study reporting on the views of service users

Individuals with high prevalence mental health (HPMH) and concurrent alcohol and/or drug disorders are vulnerable to falling ‘between the gaps’ of existing service systems. The aim of the current qualitative study was to explore service experiences (barriers to treatment and suggestions for improvements) from the perspective of those with this type of dual diagnosis. Of the individuals, 44 with a HPMH dual diagnosis participated in qualitative interviews. Thematic analysis was conducted on the data and major themes from the analysis presented. Barriers to treatment related primarily to knowledge (not knowing that services existed; breakdowns in referrals) and structure (delays in response; system inflexibility). Suggestions for improvements to services targeted barriers but took a holistic view including the need for worker and community education, addressing issues beyond the illness and the importance of relationships. The complex interaction between the disorders means that navigating either of the specialist systems has pitfalls not faced by people with a single disorder. Service user input is vital to minimise gaps and ensure service provision meets the needs of this group. These findings can now be used to inform service system redesign so that services are better able to meet the needs of this group.

Social Supervision, Ethics and Risk: An Evaluation of How Ethical Frameworks Might Be Applied within the Social Supervision Process

Service users subject to section 41 of the Mental Health Act 1983 come under the scrutiny of both the mental health and the criminal justice systems. Much of the sociological literature in this area focuses on the growth of risk-related practices in which risk management is arguably displacing more traditional notions of care. Social workers who are working with service users subject to section 41 are faced with a number of ethical dilemmas. This paper outlines Kantian, utilitarian and virtue ethics and their possible application to work with service users subject to section 41. The ethical dilemmas in applying risk assessment tools are then examined. Finally, the article draws on published research of service user views in order to consider ethical dilemmas further. The author concludes by considering how social workers might apply the ethical principles discussed.

Multi‐disciplinary approaches to pupil behaviour in school – the role of evaluation in service delivery

This study evaluates the work of a multi‐disciplinary Behaviour Support Team developed to support schools in managing problematic behaviour. An evidence base to inform future service delivery is developed, using a model of evaluation which incorporates both quantitative, outcome data and more explanatory qualitative data, incorporating the views of service users. Focusing on the first year of service delivery, interventions are evaluated as effective by client schools and positive changes in pupil behaviour are demonstrated. The mechanisms contributing to successful interventions are analysed, including the importance of maintaining a collaborative and systemic approach to problem resolution. The evaluation suggests ways in which educational psychologists working in multi‐disciplinary teams can enhance schools’ capacity to manage challenging behaviour.

Service-users and carers as placement advisors: Part 1 – getting started

Trainees tell us that the majority of their learning occurs during placement experience within the NHS. We briefly describe a project to meaningfully integrate the views of service users and carers into this learning context. In a separate article, trainees tell you of their experiences within the project.

Support workers in social care in England: a scoping study

This paper reports the findings of a scoping study designed to describe the evidence base with regard to support workers in social care in the United Kingdom and to identify gaps in knowledge. Multiple bibliographic databases were searched for studies published since 2003. The results revealed that the support worker role, though not well-defined, could be characterised as one aimed at fostering independence among service users, undertaking tasks across social and health-care, and not being trained in, or a member of, a specific profession. The studies identified were predominantly small-scale qualitative projects which considered issues such as role clarity, training and pay, worker satisfaction, service user views and the amount of time support workers are able to spend with service users compared to other staff. The review concluded that the research base lacks longitudinal studies, there is definitional confusion and imprecision, and there is limited evidence about employment terms and conditions for support workers or about their accountability and performance. The desirability and value of training and how it is resourced need further analysis. It is concluded that moves to self-directed support or personalisation and the increased reliance on and use of support workers, in the form of personal assistants, call for closer scrutiny of the role.

Is it Possible to Measure What Truly Matters? The Paradox of Clinical Audit in Developing Continence Service Standards for Older People

: Standards, benchmarking, and audits are integral to quality monitoring in health and social service provision. Recent policy in the UK National Health Service dictating the need for increased consumer involvement necessitates that service users have significant input into the composition of standards for quality of care. : To report the authors' recent involvement in research towards developing a set of agreed, measureable statements regarding quality in the provision of continence services using the views of older service users. : This article focuses on the third of a three-stage project to involve, identify, and incorporate the views of older continence service users in the development of standards of care in continence services. Whereas stage 1 developed a questionnaire with the assistance of service users, and stage 2 piloted this as a postal survey in two contrasting areas, stage 3 applied the tool in the context of face-to-face interviews with more vulnerable older people. The approach also included open-ended questions to elicit qualitative data around experiences of continence service provision. : Earlier stages of the project involved the relatively unproblematic construction of standards based on views given by experts and focus groups of older people. However, more in-depth, semi-structured interviews with service users brought to light the holistic, complex, and subjective way in which the sample viewed their experiences. : This study raises a number of questions over the efficacy of simple statements in capturing what is important to service users. If such standards are to empower patients usefully and assist professionals informatively in their provision of high-quality care, greater effort and sophistication is needed to truly reflect the needs and interests of service users. Alongside these concerns, however, there are potential ways of bridging the gap between standard setting and the lived patient experience.

Five-Phase Approach to Improve Design of Printed Transit Information and to Monitor Impact on Customer Satisfaction

Transfort, the transit service provider in Fort Collins, Colorado, conducted a major design overhaul of its printed information materials (system maps, route maps, and schedules) to achieve the following objectives: (a) increase user comprehension of printed materials, (b) increase ridership, and (c) reduce printing costs while adding four additional routes to the schedule book. To achieve those objectives, a five-phase process was developed to allow the redesign task to be informed by research literature, transit staff opinions, and the views of service users. The new designs were implemented incrementally between July 2007 and August 2008 and were accompanied by a marketing campaign that informed and explained the upcoming changes. Ongoing project monitoring efforts indicated high levels of customer satisfaction with the revised materials and their new features and significant cost savings of 26%, as well as some evidence of a positive ridership effect. These outcomes provide an endorsement of the five-phase approach developed by Transfort and suggest that it may be useful to other transit agencies considering a major revision of their printed information materials.

Cultural sensitivity in forensic services: findings from an audit of South London forensic inpatient services

This paper summarises the key findings from an audit using the Cultural Sensitivity Audit Tool for Mental Health Services (The Sainsbury Centre for Mental Health, 2001) to evaluate the views of service-users and staff in a South London Forensic Inpatient Service. Forty-one service-users and 47 members of staff working in the service took part in the audit. Staff completed the tool as a questionnaire, and service-users were interviewed. The majority of staff believed that black and minority ethnic patient groups were over-represented in the service, and many attributed this to misunderstandings of culture. Staff identified gaps in their training on race and culture; none of the staff believed they had received all the training required. Nevertheless, service-users highlighted culturally sensitive and effective aspects of the service, and many believed their cultural needs were understood. Given this disparity, the authors question whether the large emphasis on the cultural sensitivity of services is something service-providers are more concerned about than our service-users; and whether a greater focus on service quality, of which cultural sensitivity is one aspect, would be more helpful.