Experience Of Health Service Users Research Articles

Epistemic citizenship under structural siege: a meta-analysis drawing on 544 voices of service user experiences in Nordic mental health services.

This paper presents a meta-analysis, drawing exclusively on qualitative research (n = 38), which contributes to findings on mental health service user experiences of received provisions and/or encounters in contemporary social and mental health services in the Nordic countries. The main objective is to identify facilitators of, and barriers to, various notions of service user involvement. Our findings provide empirical evidence regarding service users' experiences of participation in their encounters with mental health services. We identified two overarching themes, professional relations and the regulative framework and current rule and norm system, in the reviewed literature concerning facilitators and hindrances of user involvement in mental health services. By including the interrelated policy concept of 'active citizenship' and theoretical concept of 'epistemic (in)justice' in the analyses, the results provide foundations for broader exploration and problematization of the policy ideals of what we call 'epistemic citizenship' and contemporary practices in Nordic mental health organizations. Our conclusions include suggestions that linking micro-level experiences to organizational macro-level circumstances opens up avenues for further research on service user involvement.

'Dignity and respect': An example of service user leadership and co-production in mental health research.

This paper explores the methodological aspects of a user‐led study investigating mental health service user experiences of targeted violence and abuse (often called 'hate crime'). 'Keeping Control' was a 16‐month qualitative study, undertaken in the context of adult safeguarding reforms in England. By collecting data on service user concepts and experiences, the research sought to address a gap in research and practice knowledge relating to targeted violence, abuse and hostility against people with mental health problems. In this paper, we discuss the significance of the design and methodology used for this study, with a particular focus on the interviews with service users. The research was both user‐led and carried out in collaboration with practitioners and academics, a form of research co‐production. Our aim is to inform researchers, practitioners and policymakers about the value of user leadership in co‐productive research with practitioners, particularly for a highly sensitive and potentially distressing topic.

"Keeping Control": A user-led exploratory study of mental health service user experiences of targeted violence and abuse in the context of adult safeguarding in England.

The situation for people with mental health problems as a group of disabled people who experience targeted violence and abuse is a complex one. Disabled people, particularly those with mental health problems, are at higher risk of targeted violence and hostility with few effective evidence‐based prevention and protection strategies. Achieving effective safeguarding for adults with mental health problems is characterised by differential attitudes to and understandings of abuse by safeguarding practitioners, as well as systemic issues arising from multi‐agency working. “Keeping Control” was a 16‐month user‐led, co‐produced exploratory qualitative study into service user experiences of targeted violence and abuse that was examined in the context of Care Act 2014 adult safeguarding reforms in England. User‐controlled interviews of mental health service users (N = 23) explored their experiences and concepts of targeted violence and abuse, prevention and protection. Preliminary findings from these interviews were discussed in adult safeguarding and mental health stakeholder and practitioner focus groups (N = 46). The data were also discussed via two facilitated Twitter chats (responses N = 585 and N = 139). Mental health service users’ experiences and concepts of risk from others, vulnerability and neglect can be different to those of practitioners but should be central to adult safeguarding. Histories of trauma, multi‐factorial abuse; living with fear and stigma as well as mental distress; the effects of “psychiatric disqualification” and individual blaming should be addressed in adult safeguarding in mental health. Fragmented responses from services can mean a person becomes “lost in the process”. Staff can feel disempowered, afraid or lacking in confidence to “speak up” for individuals in complex service systems with poor communication and lines of accountability. Adult safeguarding practitioners and stakeholders need to be confident, accessible and respond quickly to service users reporting incidents of targeted violence and abuse particularly in closed environments such as wards or supported housing.

Mental health service user experiences of targeted violence and hostility and help-seeking in the UK: a scoping review.

The aim of this research scoping review was to assemble an evidence base for the UK on mental health service user experiences and perspectives on mental health-related targeted violence and hostility ('disability hate crime'). It also aims to address some of the gaps in the knowledge on risk management, help-seeking and prevention from the perspectives of those who experienced targeted violence and hostility because of their mental health problems or psychiatric status. Seven key mental health and social care bibliographic databases were searched for relevant UK research studies from 1990 until 2016. Grey literature was identified through online searches. A scoping review charting approach and thematic analysis methodology were used to analyse the studies. In total 13 studies were finally included, over half of which used survey methods. All studies included people with experiences of mental health problems. The studies provide information on: the types of potential hate crime; indicate where incidents take place; give some insight into the victims' relationship with the perpetrators; the location of incidents as well as the psychological, social, financial and physical impacts on the victim; the types of help-seeking behaviours adopted by the victims; a range coping strategies that people with mental health problems adopted in response to experiences of targeted violence or abuse. This scoping review provides a UK-based overview of mental health service user concepts and experiences of mental health-related targeted violence and hostility ('disability hate crime'). It reveals some specific issues relating to mental health and disability hate crime. Further investigation into disability hate crime with a specific focus on mental health is required. This is a UK-based overview, which offers a useful comparator for researchers, practitioners and policy-makers internationally.

Understanding Mental Health Service User Experiences of Restraint Through Debriefing: A Qualitative Analysis.

To examine debriefing data to understand experiences before, during, and after a restraint (seclusion, chemical, and physical) event from the perspective of inpatients at a large urban mental health and addiction hospital. Audits were conducted on a purposeful sample of inpatient charts containing post-restraint event inpatient debrief forms (n = 55). Qualitative data from the forms were analyzed thematically. Loss of autonomy and related anger, conflict with staff and other inpatients, and unmet needs were the most common factors precipitating restraint events. Inpatients often reported that increased communication with staff could have prevented restraint. Inpatients described having had various negative emotional states and responses during restraint events, including fear and rejection. Post-restraint, inpatients often desired to leave the unit for fresh air or to engage in leisure activities. To our knowledge, our study is the first to use debriefing form data to explore mental health inpatients' experiences of restraint. Inpatients view restraint negatively and do not experience it as a therapeutic intervention. Debriefing, guided by a form, is useful for understanding the inpatient's experience of restraint, and should be used to re-establish the therapeutic relationship and to inform plans of care. In addition, individual and collective inpatient perspectives should inform alternatives to restraint.

Diabetes in Kyrgyzstan: changes between 2002 and 2009

Health system reform in Kyrgyzstan is seen as a relative success story in central Asia. Initially, most attention focused on structural changes, and it is only since 2006 that the delivery of care and the experience of health service users have risen on the agenda. One exception from the earlier period was a rapid appraisal of the management of diabetes, undertaken in 2002. Using that study as a baseline, we describe the findings of a new evaluation of diabetes management, undertaken in 2009, using the Rapid Assessment Protocol for Insulin Access, now implemented in seven countries. Access to care has improved through the creation of the Family Medical Centres and the deployment of endocrinologists to them. Another improvement is the access to insulin and related medicines, although assessment of the procurement system reveals that the government is getting very poor value for money. Looking ahead, there are grounds for optimism that the passage of the law on diabetes may progressively have a greater impact. Although the law is not yet fully implemented, it has enabled the diabetes associations to defend the rights of their members. This increased capacity is credited with some improvements in diabetes care.

Ambulatory health service users' experience of waiting time and expenditure and factors associated with the perception of low quality of care in Mexico

BackgroundA principal reason for low use of public health care services is the perception of inferior quality of care. Studying health service user (HSU) experiences with their care and their perception of health service quality is critical to understanding health service utilization. The aim of this study was to define reference points for some aspects of health care quality and to analyze which HSU experiences resulted in perceptions of overall low quality of care.MethodsData from the National Health Survey 2006 were used to compare the experiences of HSUs with their ambulatory care at Ministry of Health and affiliated institutions (MOH), social security institutions (SSI) and private institutions (PrivI). Reference points of quality of care related to waiting time and expenditure were defined for each of the three types of institutions by analyzing HSU experiences rated as 'acceptable'. A multivariable logistic regression model was used to identify the principal factors associated with the general perception of low quality of care.ResultsA total of 11,959 HSUs were included in the analysis, of whom 37.6% (n = 4,500) HSUs received care at MOH facilities; 31.2% (n = 3,730) used SSI and 31.2% (n = 3,729) PrivI. An estimated travel and waiting time of 10 minutes respectively was rated as acceptable by HSUs from all institutions. The differences between the waiting time rated as acceptable and the actual waiting time were the largest for SSI (30 min) in comparison to MoH (20 min) and PrivI (5 min) users. The principal factors associated with an overall perception of low quality of care are type of institution (OR 4.36; 95% CI 2.95-6.44), waiting time (OR 3.20; 95% CI 2.35-4.35), improvement of health after consultation (OR 2.93; CI 2.29-3.76) and consultation length of less than 20 minutes (2.03; 95% CI 1.60-2.57).ConclusionsThe reference points derived by the HSUs' own ratings are useful in identifying where quality improvements are required. Prioritizing the reduction of waiting times and improving health status improvement after consultation would increase overall quality of care ratings.

Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: The GAMIAN-Europe study

There is a growing interest in examining self-stigma as a barrier to recovery from schizophrenia. To date, no studies have examined mental health service user's experiences of self-stigma throughout Europe. This study describes the level of self-stigma, stigma resistance, empowerment and perceived discrimination reported by mental health service users with a diagnosis of schizophrenia or other psychotic disorder across 14 European countries. Data were collected from 1229 people using a postal survey from members of mental health non-governmental organisations. Almost half (41.7%) reported moderate or high levels of self-stigma, 49.2% moderate or high stigma resistance, 49.7% moderate or high empowerment and 69.4% moderate or high perceived discrimination. In a reduced multivariate model 42% of the variance in self-stigma scores was predicted by levels of empowerment, perceived discrimination and social contact. These results suggest that self-stigma appears to be common and sometimes severe among people with schizophrenia or other psychotic disorders in Europe.