Service User Involvement (SW Ed.)

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A qualitative exploration of environmental and relational factors affecting service user involvement from the perspective of community mental health nurses : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosop

A qualitative exploration of environmental and relational factors affecting service user involvement from the perspective of community mental health nurses : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosophy in Nursing at Massey University, Palmerston North Campus, New Zealand

Mental health policy champions for change within MHS through advocating for service users to attain control over their health needs (Berry et al., 2010; MHC, 2011b). These changes have not occurred without ethical discomfort as nurses are required to relinquish historic case management roles and embrace person centred care. Conflicting roles of ‘caring’ versus ‘curing’ within mental health nursing contributes to institutionalised practices and limits service user involvement. In part, legislation such as The Mental Health Amendment Act (1999) negates service user choice and maintains professional power. Berry et al. (2010) acknowledge that mental health legislation sets precedence for paternalistic nursing practice with the requirement of nurses to use containment and control, under the guise of the law, to enforce care. Participants themselves identify feeling ethically divided regarding advocating for service user rights versus society’s expectations that they police and monitor service user behaviours. This leaves them feeling uncertain on how to provide effective care that is in keeping of the needs of service users, organisations, professional guidelines and society’s beliefs. Ambivalence to implement inclusive service user driven care continues as they express feelings of powerlessness and an inability to articulate their unique identity within a changing and challenging health care environment.
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Service user involvement: impact and participation: a survey of service user and staff perspectives

Service user involvement: impact and participation: a survey of service user and staff perspectives

An important strength of the current study lies in its broad perspectives on service user involvement and the diverse range of user involvement mechanisms covered in the study. The design of the questionnaire allowed for a measurement of the level of participation in user involve- ment, as well as an overview of people’s perceptions on the extent to which various initiatives were having a posi- tive impact. Furthermore participants were able to elabor- ate on their positive and negative experiences associated with user involvement. The inclusion of professionals, in- cluding social work and psychiatric nursing practitioners, added further depth to the study by encompassing multiple viewpoints on the subject, ensuring greater confi- dence in conclusions drawn from each group of respon- dents. A further strength of the study was the sampling method. Service users were recruited from ordinary clin- ical contexts including community mental health clinics, day centres and community based substance misuse services. All participants were recruited and interviewed in person by a member of the research team.
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Dancing to our own tunes: Reassessing black and minority ethnic mental health service user involvement

Dancing to our own tunes: Reassessing black and minority ethnic mental health service user involvement

As suggested earlier, there have been very few studies concentrating on the experiences of service users and survivors from black and minority ethnic communities in user involvement. The general perception is that there is an “under-representation” of service users/survivors from black and minority ethnic communities in mainstream involvement initiatives. Several reasons have been attributed to this perceived under-representation. Signifi cant among these is the fact that the processes of involvement and participation are not sensitive or adapted to the needs of service users from black and minority ethnic backgrounds. Nasa Begum (2006) analysed the myths surrounding black and minority ethnic service user involvement in social care and suggested that, while black and minority ethnic communities have a long history of self-help and direct experience, their participation in social care initiatives will only be meaningful if their involvement moves from being purely consultative to one that is real and constructive. Based on her substantial experience of being involved in various user involvement activities, Premila Trivedi (2001, 2008) has written about the hierarchical nature of these processes, and the power plays and racism within both policy-driven initiatives and mainstream mental health movements. She argues that user involvement will become a meaningful reality only if the damage done to individuals within mental health systems is acknowledged, and the roles and power relations between users and mental health professionals in involvement settings are evaluated.
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Service user involvement for mental health system strengthening in India: a qualitative study

Service user involvement for mental health system strengthening in India: a qualitative study

Pervasive stigma towards people with mental illness has been observed historically as a significant barrier to SU-CG involvement across mental health system blocks, be it policy making, service development or research [19]. Improving public attitudes can create a virtuous cycle and increase empowerment among service users [7]. However, respondents in this study emphasise that stigma and social marginalization currently prevent ser- vice users from getting actively involved in any compo- nent of the system. This could be considered as a ‘stigma gap’. Stigma is a potent negative force that operates at multiple levels. Societal stigma [4] towards people with mental illness can establish a negative social context for people with mental illness and their families [18, 28]. Provider level stigma [16] towards service users may im- pede access and engagement with services and treatment and the recovery pathway [1]. Service users hence may internalise negative stereotypes and therefore interven- tions to address self-stigma are needed so that service users do not become further disempowered [4, 17]. Thus, in order to facilitate service user involvement, stigma needs be tackled at multiple levels in society, health care systems and services and among service users [30, 34]. Our study participants indicated that self- stigma and fear of social exclusion was even stronger in urban settings among people with mental illness, indi- cating that stigma is pervasive despite relatively better education and awareness levels. Therefore, stigma needs to be tackled at each level in the building blocks of the mental health system and needs to be addressed dis- tinctly in its own right [6].
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Service user involvement in mental health system strengthening in a rural African setting: qualitative study

Service user involvement in mental health system strengthening in a rural African setting: qualitative study

The service user/caregiver participants in this study spoke of accessible and adequate mental healthcare as being a priority for them, and recommended expansion of care to include psychosocial support and rehabilita- tion services. All three groups who participated in the study articulated the need for capacity building, promo- tion of awareness-raising and facilitation of structures for service user and caregiver involvement. A situational analysis study on the challenges and opportunities for integrating mental health conducted in Sodo district [46] identified various difficulties, including financial constraints, high level of poverty, low literacy, social deprivation, limited level of community awareness, high level of stigma and abuse, absence of health system structures and support systems for mental health care, and a lack of reliable supplies of medications among others. However, concerted efforts are now made to implement multi-faceted mental health care plans in Ethiopia, which in turn provides an opportunity to inte- grate service user involvement [47].
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A qualitative study analysing the journey towards an embedded approach to service user involvement

A qualitative study analysing the journey towards an embedded approach to service user involvement

Involving users of services in decisions about their health care is not a new concept. In 1978 at Alma Ata the Global Strategy for Health declared by the World Health Organisation (WHO) and The United Nations Children’s Fund (UNICEF) ‘Health for All by the Year 2000’ had community involvement in healthcare decisions as one of its key themes (Corbin, 2005). More recently a WHO policy briefing echoes the positive role that patient can have in terms of protecting and managing their health (Coulter et al 2008). Internationally, service user involvement is becoming more established, underpinned by an extensive literature, though due to a lack of standardised outcome measures comparison of results can be difficult (Kovacs Burns et al, 2014). Leading the way internationally as can be seen in the growing number of patient organisations are USA, Canada, Australia, New Zealand, Denmark and Norway (McEvoy et al, 2008). The key arguments supporting these developments centre on the fact that the involvement of users and carers in service development and delivery plays an increasingly important role in creating health services that are fit for purpose and effective in terms of improving health and wellbeing.
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Service user involvement in teaching and learning:student nurse perspectives

Service user involvement in teaching and learning:student nurse perspectives

According to Tobbell et al. (2018) the pedagogy of service user involvement can be explained in terms of a learning theory, that is, the socio-cultural theory. This type of learning is said to emerge as a result of the interactions about a person within a context (Skilton, 2011). Such learning could be facilitated through mentoring and coaching (Brockbank and McGill, 2006), where student interactions with people who have personal experience of care services can help students construct a well- rounded view of their professional practice when caring for service users. Creating such interactions in a class setting and not only in practice placement areas, establishes the importance of linking theory and practice. According to Brockbank et al. (2006), coaching as a learning style fosters critical reflection in such a way that students can aspire to a desired behaviour (Tobbell et al. 2018).
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The Service User Involvement : Thematic Review - Issue 1

The Service User Involvement : Thematic Review - Issue 1

 Leadership: (from the ‘top’ and the ‘bottom’) is key to embedding a culture of involvement. Service user involvement is not, or should not be, an ‘add on’. There is a need for strategic leadership and commitment at policy and senior management levels to ensure that this becomes a core part of people’s roles and this means creating space in people’s workload allocation to support innovation. For some, this also means employing a dedicated worker and/or peer ‘champions’.

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Inclusive Justice - Co-producing Change : A Practical Guide to Service User Involvement in Community Justice

Inclusive Justice - Co-producing Change : A Practical Guide to Service User Involvement in Community Justice

Our participants suggested that motivations for participation were as much about how it made them feel as what they got out of it. For many it was about feeling worth something; about being and feeling normal, but doing things differently and doing different things; and having somewhere to go and something to do. Some people want to get involved because they feel that they have a contribution to make, they want to share their expertise and experiences, use existing skills and develop new ones, and they want to make a genuine difference and feel productive. This resonates strongly with the relationships between service user involvement and perceptions of citizenship, discussed in section 2. There is also a distinction between getting involved and staying involved. For many, reasons to keep coming along also included the relational aspects of involvement: feeling comfortable, gaining a sense of belonging, mutual respect, building new relationships and experiencing community.
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From admission to discharge in mental health services: a qualitative analysis of service user involvement

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

This study aimed to explore the nature of service user involvement at the transition points of admission and discharge to an acute inpatient mental health ward. Analysis of the data collected found that despite the current rhetoric of recovery and involvement in policy and practice discourses the service user voice was lost at these key care delivery points. This was evident in the language used to describe what happened during care transitions and also the culture of the teams and organisations involved. Whilst it was recognised that clinicians did not come to mental health care with the intention of working in this way, the current
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Service user involvement in the co production of a mental health nursing metric : the therapeutic engagement questionnaire

Service user involvement in the co production of a mental health nursing metric : the therapeutic engagement questionnaire

Following feedback and revisions, the tool retained the 20 statements. The 20- statement revised tool became the basis for a much larger project involving service users from four Mental Health NHS Trusts across England. Service users (n=86) completed the revised question- naire within their care (acute inpatient) environment. The data were analysed by a statistician, and it appears that two groups or factors are formed in the TEQ—care delivery and care interactions. Example questions include “(The nursing staff…) Show me respect at all times, Give me support at all times, Accept me for who I am,” in the “environ- ment and atmosphere of the ward as created by the nursing staff” part of the questionnaire, and “(My named nurse…) Works in partnership with me to achieve my goals, Promotes caring relationships, Supports me in the choices that I make,” in the 1:1 sessions with my named nurse section. The TEQ’s psychometric properties were reviewed, and it was found that the TEQ behaves well as an assessment scale. Information about the groups/factors of the TEQ and its psychomet- ric properties will be discussed in another article pertaining to this project in the near future.
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Service User Involvement in the British Red Cross: Experience and Factors Affecting Willingness to Participate

Service User Involvement in the British Red Cross: Experience and Factors Affecting Willingness to Participate

Interestingly, both groups revealed the belief that staff and participants had ‘shared goals.’ This finding differs significantly from previous studies that found participants had difficult relationships with staff (e.g. Crawford et al., 2002) and discrepancies between the views of professionals and service users (Campbell, 2001; Coulter, Peto & Doll,1994). Having ‘shared goals’ indicated a sense of cohesion, connectedness, and blurring of the boundaries between staff and SU’s. This is likely to link to the type of service the BRC is; voluntary services are viewed in a less authoritarian way than statutory services as they are not government run, thus power differentials between SU’s and staff are reduced. As previously published research was predominantly carried out in the public sector this inconsistency seems logical. More specifically, much previous research was conducted in a health setting thus further technical training and language are likely to have increased the power differentials further, this is especially true if staff felt that their expertise were being called into question. A sense of cohesion and shared goals gives services conducting SUI a significant advantage. Further experiences of focus group attendees and service user volunteers are explored separately as they differed slightly and vary
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Theorising service user involvement from a researcher perspective

Theorising service user involvement from a researcher perspective

There are differing perspectives and differing paradigms of research, and PPI fits more easily into some than others. Different research paradigms can be conceptualised along a continuum with approaches grounded in positivistic enquiry (for example, randomised controlled trials) at one end, and those recognising the shifting complexity of the self and of social situations (for example, participatory enquiry) at the other (Guba & Lincoln, 1994; Heron & Reason, 1997). Unsurprisingly, PPI in research has grown from approaches such as participatory enquiry (Nolan et al., 2007). It is fairly obvious that PPI can easily be incorporated into an approach which values, even demands, active contribution from all those involved (Heron & Reason, 1997). For example, in participatory and many qualitative approaches, with appropriate support, service users can be involved in all the research processes, including study design and collection and analysis of data (Hopper & Lincoln, 2009; Moule et al., 2011). In these approaches, it is also possible to adopt a relatively flexible attitude to the conceptualisation and construction of knowledge, since any assumption that
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A practice research study concerning homeless service user involvement with a programme of social support work delivered in a specialized psychological trauma service

A practice research study concerning homeless service user involvement with a programme of social support work delivered in a specialized psychological trauma service

The support work programme was introduced at the traumatic stress service to augment psychotherapeutic interventions: to more comprehensively attend to the psychological and social needs of service users, particularly to improve capacity to offer early intervention and outreach help, and help over time; and to provide a more joined up approach to the education of unqualified mental health professionals in the field of psychological trauma. The programme was open to some statutory service users i.e. those carrying a formal or suspected diagnosis of a trauma-related psychiatric condition and/or referral by statutory health services. However, the majority of service users accessed the programme via outreach work with local organisations serving community populations for whom trauma can be considered part and parcel of daily life, but for whom the uptake of mainstream mental health services remains low, for example refugee groups, sex workers and women suffering domestic abuse. The service worked alongside local providers of supported accommodation for, and outreach work with, long-term homeless and vulnerably
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Service user and carer involvement in student nurse selection: Key stakeholder perspectives

Service user and carer involvement in student nurse selection: Key stakeholder perspectives

discussed in Felton and Stickley’s (2004) study, the academics in this study also felt initially threatened by the introduction of service users into what traditionally has been their ‘territory’. Some worried about what they perceived as a possible shift in the balance of power. Their chief concern was who would have the final say on which students should be offered a place if they disagreed with the service user. Despite their initial doubts and reservations, once the academics had had a chance to work with the service user they reflected on the experience positively. It transpired that the service user tended to agree with the academics on the qualities they were looking for in potential students. The academics noticed that the service user’s were on ‘their level’ and often said the same things they were thinking. This assured the academics of their candidate choices. There was a difference of opinion on only one occasion and this was resolved through discussion with acknowledgement that the service user had influenced the decision through their perspective in a positive way. One academic referred to having the service user presence as a form of quality assurance. The academics also concurred that the service user involvement was beneficial due to the impact it had on the potential students.
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The experience of mental health service users in health system strengthening: lessons from Uganda

The experience of mental health service users in health system strengthening: lessons from Uganda

health systems development. The process seemed to be top-down and this was seen as a threat to sustainable improvement in health service delivery [1]. Despite this low level of involvement, informants were quite clear of the benefits of service user involvement in health systems strengthening. Some of the benefits included: improving the responsiveness of the health system to respect the actual needs of the users, reduced stigma and reducing the human resource gaps in the delivery system through task shifting with service users. These benefits are not unique to Uganda and have been mentioned in other studies in both LMICs [1–4, 10] and high-income coun- tries [11–13, 16, 51, 52]. One of the glaring limitations to service user involvement is the lack of a clear strategy or a model to guide service user involvement in this pro- cess [4, 6]. The strategy and model envisaged needs to be clearly stated in legal and policy frameworks. Uganda has several laws and policies [e.g., the Uganda Ministry of Health Policy (2016), Uganda Ministry of Health Stra- tegic, 2018–2022], however, these policies lack guidance on how service users could play an effective role in health systems strengthening. In health systems in the Western World, policy and legal frameworks exist to support ser- vice user involvement and collaboration [6, 10]. Uganda is currently at the stage of improving coverage and effec- tiveness of its PHC program, of which mental health is part. Such efforts need to be guided by legal and policy frameworks [1, 4].
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Service user reflections on the impact of involvement in research

Service user reflections on the impact of involvement in research

Our involvement in the development of tools to evaluate our impact has helped ensure that measurements are meaningful from a service user perspective, and out- comes important to this group are included. In addition the results from the evaluation has improved our under- standing of what aspects of our involvement work best across different contexts in which we operate, whether providing feedback to a researcher about the accessibility of their recruitment materials on a particular researcher project; to influencing the Directorate ’ s research agenda. It has also highlighted areas for improvement. This will help sharpen our focus on how we need to develop membership and activities to maximise future resource investment in our remit and activities. In addition we feel service user involvement in the provision of advice about cost and other methodological implications im- portant to NHS decision making should be prioritised and that sharing our learning through greater network- ing with other groups is needed to maximise our own value, effectiveness and the resource justification for PPI.
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User involvement and desired service developments in drug treatment: Service user and provider views

User involvement and desired service developments in drug treatment: Service user and provider views

In order to make a step forward in this field, this study set out to examine a) user and provider perspectives on the nature and extent of user involvement currently available at community- based drug services, b) both parties’ desired levels of user involvement, and c) users’ and providers’ priorities for service development. As relatively little is known about the area, it was important to enable users to communicate their views freely, thus the researchers used a semi- structured interview approach. To obtain a wide range of different views, interviews were carried out in services across the north of England. Service user involvement and commentary in the research process has been achieved through user advisor involvement in planning and implementation of the study.
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Service user and carer involvement in mental health care safety: raising concerns and improving the safety of services

Service user and carer involvement in mental health care safety: raising concerns and improving the safety of services

Contrary to these developments in acute hospital and primary care settings, there has been little comparable research into the identification of safety issues in UK mental health care services despite serious failures in service provision [6]. This is particularly important given that it was a mental health Trust that was the first to be prosecuted post-Francis Report under new powers by the Care Quality Commission for failing to provide safe care and treatment [7]. One crucial aspect of improving patient safety is the potential for involving patients and their families as a resource for increasing safety by pro- viding feedback either during or after their care experi- ence. Patients and families are well positioned to notice things that staff do not [8] and provide an independent perspective based on their experiences of receiving care [9]. Evidence has shown that patients can willingly and meaningfully feed back on the safety of their care [10–14]. However, research on how to involve patients in interven- tions to improve safety and whether there are any benefits, is generally thought to be inconclusive [15]. Interventions have also involved patients directly intervening in their care, receiving education about their condition and feeding back about their experiences [16]. Research in acute hospital and primary care settings has found that patients are often willing to participate in interventions but are apprehensive about negative repercussions from raising concerns and question whether it is their responsi- bility to do so [17, 18]. One area that is relatively well developed in mental health care services is the principle of service user involvement which has been shown to improve several aspects of service, for example, better reflecting needs and preferences [19]. However, the context of mental health care is unique, service users can be at risk of compulsory treatment [20], experience high levels of stigma and low levels of social participation
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<p>A Clinical Audit Of Service User And Carer Involvement In An NHS Community Mental Health Team Risk Assessment Tool</p>

<p>A Clinical Audit Of Service User And Carer Involvement In An NHS Community Mental Health Team Risk Assessment Tool</p>

From a resource perspective, results of this audit may re fl ect the lack of time and availability that staff have had to be able to fully involve service users and carers in their risk assessment. Staff may be under pressure to complete risk assessments within an allocated time frame that has pre- vented meaningful service user involvement. The adminis- trative burden of completing risk assessments has previously been identi fi ed as an issue. 7 If staff are recording risk-related information on other CMHT care documents, they may not deem it necessary, or have the time, to transfer this information into the STAR v2. Being mindful of pro- cedural, systemic, or resource factors, it is possible that unknown variables have prevented involvement. For the current audit, this information was not collected or indi- cated on any audited STAR v2 assessments.
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