In this article we discuss the nature of service user involvement in Higher Education (HE) social... more In this article we discuss the nature of service user involvement in Higher Education (HE) social work programmes in both England and Slovenia. This discussion is based on our experiences of supporting such programmes alongside evidence derived from the literature. Firstly, we present a discussion of the effective development of service user involvement in the respective HEIs in our two countries. Secondly, we explore how the involvement of experts-by-experience in HEIs benefits the learning of social work students. Thirdly, we investigate how the emergence of Covid-19 has influenced the delivery of social work education and the involvement of service users in our respective social work programmes. We conclude by noting that our social work programmes have been forced to adapt to the needs of students in an online community and have embraced inclusive education. As a result of this, we suggest that the needs of experts-by-experience should inform the development of social work educa...
We introduce the new meaning of recovery and reflect on its potential to develop current thinking... more We introduce the new meaning of recovery and reflect on its potential to develop current thinking and practice in mental health with adults, and look at its implications for service providers and service users. We analyse the relevance of this concept to the context of the UK government’s policy to move disabled people, including mental health service users, from ‘welfare to work’. The social and economic climate that drives this policy agenda and the implications for society of the focus on employment are outlined, as we reflect on the role of work in supporting or hindering the recovery process and identity re-formation, in part through the experience of the first author. We conclude by suggesting how practice can enable a process of returning to ordinary living, including employment, that supports recovery through a process of shared responsibilities
It is difficult to understand what it feels like for people with mental ill-health to be cared-fo... more It is difficult to understand what it feels like for people with mental ill-health to be cared-for and supported by family members; this experience is often little-explored. Narratives about caring have been increasingly written alongside first-person accounts of recovery, however, there is a dearth of literature written to gain the perspective of being cared-for because of mental distress. Thus, using autoethnography, I present three critical incidents occurring at different points in my recovery to enable exploration of experiences of being cared-for. Firstly, a critical incident at the point of acute unwellness is introduced, secondly an incident during a consultation with a health professional is highlighted, and finally a moment of transition when embarking on an independent life with my husband-to-be is described. I use autoethnography to connect “the autobiographical and personal to the cultural, social, and political”. I consider how the identity of a carer is continually ne...
I reflect on how lived experiences that are derived from service user expert knowledge have the p... more I reflect on how lived experiences that are derived from service user expert knowledge have the potential to confront stigmatization, which is encountered widely by people who have a diagnosis of schizophrenia. The implications of the political dimensions of the diagnosis are explored and the impact of stigma on those who have mental ill-health is discussed. The value of narrative research is highlighted, and the growing importance and increasing recognition of the validity of service user expert knowledge is considered. Using two stories to illustrate how professionals responded to me as a parent with a diagnosis of schizophrenia, I highlight the defensive practice I experienced and the assumptions about me as a person with mental ill-health. I reflect on how simultaneous feelings of power and powerlessness, accorded to my personal and professional status, are experienced in this context. This leads to consideration of the potential for service user expert knowledge, specifically i...
I reflect on how lived experiences that are derived from service user expert knowledge have the p... more I reflect on how lived experiences that are derived from service user expert knowledge have the potential to confront stigmatization, which is encountered widely by people who have a diagnosis of schizophrenia. The implications of the political dimensions of the diagnosis are explored and the impact of stigma on those who have mental ill-health is discussed. The value of narrative research is highlighted, and the growing importance and increasing recognition of the validity of service user expert knowledge is considered. Using two stories to illustrate how professionals responded to me as a parent with a diagnosis of schizophrenia, I highlight the defensive practice I experienced and the assumptions about me as a person with mental ill-health. I reflect on how simultaneous feelings of power and powerlessness, accorded to my personal and professional status, are experienced in this context. This leads to consideration of the potential for service user expert knowledge, specifically i...
Carers’ views about their role in recovery are under-researched, and studies investigating their ... more Carers’ views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers’ discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery p...
This article highlights the importance of learning about reflective processes in social work educ... more This article highlights the importance of learning about reflective processes in social work education, because acts of reflection enable us to learn from past experiences in order to improve our future practice. We show how duoethnography, as a reflective method, enables us, as two social work academics from the UK and Slovenia, to investigate our personal positioning and its influence on our practice. This duoethnographic study allows the authors to challenge their place in the status quo, and consider their social and political position in society. Alongside the use of duoethnography as a reflective method, the analysis of critical incidents, is used herewith to develop our personal and professional knowledge base. We consider how our own educational experience taught us to value the perspectives of experts-by-experience in all aspects of our practice, investigating the disclosure of our own self and identity in this process; furthermore we consider the importance of incorporatin...
Shared decision-making (SDM) between mental health medication prescribers and service users is a ... more Shared decision-making (SDM) between mental health medication prescribers and service users is a central pillar in the recovery approach, because it supports people experiencing mental ill-health to explore their care and treatment options to promote their well-being and to enable clinicians to gain knowledge of the choices the service user prefers. SDM is receiving increasing recognition both in the delivery of physical and mental health services; and as such, is of significance to current practice. As an expert-by-experience with over 30 years of receiving mental health treatment, I have made many choices about taking medication and accessing other forms of support. The experiences of SDM have been variable over my career as a service user: both encounters when I have felt utterly disempowered and interactions when I have led decision-making process based on my expertise-by-experience. In this article, I recount two experiences of exploring care and treatment options: firstly, a d...
The Journal of Mental Health Training, Education and Practice, 2018
PurposeThe purpose of this paper is to reflect on the development of a recovery-oriented training... more PurposeThe purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning.Design/methodology/approachA small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development.FindingsReflections on the advisory group process are described that led to the co-production...
Many large studies have complex advisory committee structures, yet there is no empirical evidence... more Many large studies have complex advisory committee structures, yet there is no empirical evidence regarding their optimal composition, scope and contribution. The aim of this study was to inform the committee and advice infrastructure for future research studies. In the context of a five-year study funded by the UK National Institute for Health Research, three advisory committees were formed. In addition, advice was obtained from individual experts. All recommendations received in the start-up phase (first seven months) of the study were recorded, along with the decision about implementation of the recommendation. A particular focus was on the impact of public involvement. A total of 172 recommendations were made, including 70 from 20 individual experts. The recommendations were grouped into five emergent themes: Scientific, Pragmatic, Resources, Committee and Collaboration. Most recommendations related to strengthening existing components or adding new components to the study proto...
In this article we discuss the nature of service user involvement in Higher Education (HE) social... more In this article we discuss the nature of service user involvement in Higher Education (HE) social work programmes in both England and Slovenia. This discussion is based on our experiences of supporting such programmes alongside evidence derived from the literature. Firstly, we present a discussion of the effective development of service user involvement in the respective HEIs in our two countries. Secondly, we explore how the involvement of experts-by-experience in HEIs benefits the learning of social work students. Thirdly, we investigate how the emergence of Covid-19 has influenced the delivery of social work education and the involvement of service users in our respective social work programmes. We conclude by noting that our social work programmes have been forced to adapt to the needs of students in an online community and have embraced inclusive education. As a result of this, we suggest that the needs of experts-by-experience should inform the development of social work educa...
We introduce the new meaning of recovery and reflect on its potential to develop current thinking... more We introduce the new meaning of recovery and reflect on its potential to develop current thinking and practice in mental health with adults, and look at its implications for service providers and service users. We analyse the relevance of this concept to the context of the UK government’s policy to move disabled people, including mental health service users, from ‘welfare to work’. The social and economic climate that drives this policy agenda and the implications for society of the focus on employment are outlined, as we reflect on the role of work in supporting or hindering the recovery process and identity re-formation, in part through the experience of the first author. We conclude by suggesting how practice can enable a process of returning to ordinary living, including employment, that supports recovery through a process of shared responsibilities
It is difficult to understand what it feels like for people with mental ill-health to be cared-fo... more It is difficult to understand what it feels like for people with mental ill-health to be cared-for and supported by family members; this experience is often little-explored. Narratives about caring have been increasingly written alongside first-person accounts of recovery, however, there is a dearth of literature written to gain the perspective of being cared-for because of mental distress. Thus, using autoethnography, I present three critical incidents occurring at different points in my recovery to enable exploration of experiences of being cared-for. Firstly, a critical incident at the point of acute unwellness is introduced, secondly an incident during a consultation with a health professional is highlighted, and finally a moment of transition when embarking on an independent life with my husband-to-be is described. I use autoethnography to connect “the autobiographical and personal to the cultural, social, and political”. I consider how the identity of a carer is continually ne...
I reflect on how lived experiences that are derived from service user expert knowledge have the p... more I reflect on how lived experiences that are derived from service user expert knowledge have the potential to confront stigmatization, which is encountered widely by people who have a diagnosis of schizophrenia. The implications of the political dimensions of the diagnosis are explored and the impact of stigma on those who have mental ill-health is discussed. The value of narrative research is highlighted, and the growing importance and increasing recognition of the validity of service user expert knowledge is considered. Using two stories to illustrate how professionals responded to me as a parent with a diagnosis of schizophrenia, I highlight the defensive practice I experienced and the assumptions about me as a person with mental ill-health. I reflect on how simultaneous feelings of power and powerlessness, accorded to my personal and professional status, are experienced in this context. This leads to consideration of the potential for service user expert knowledge, specifically i...
I reflect on how lived experiences that are derived from service user expert knowledge have the p... more I reflect on how lived experiences that are derived from service user expert knowledge have the potential to confront stigmatization, which is encountered widely by people who have a diagnosis of schizophrenia. The implications of the political dimensions of the diagnosis are explored and the impact of stigma on those who have mental ill-health is discussed. The value of narrative research is highlighted, and the growing importance and increasing recognition of the validity of service user expert knowledge is considered. Using two stories to illustrate how professionals responded to me as a parent with a diagnosis of schizophrenia, I highlight the defensive practice I experienced and the assumptions about me as a person with mental ill-health. I reflect on how simultaneous feelings of power and powerlessness, accorded to my personal and professional status, are experienced in this context. This leads to consideration of the potential for service user expert knowledge, specifically i...
Carers’ views about their role in recovery are under-researched, and studies investigating their ... more Carers’ views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers’ discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery p...
This article highlights the importance of learning about reflective processes in social work educ... more This article highlights the importance of learning about reflective processes in social work education, because acts of reflection enable us to learn from past experiences in order to improve our future practice. We show how duoethnography, as a reflective method, enables us, as two social work academics from the UK and Slovenia, to investigate our personal positioning and its influence on our practice. This duoethnographic study allows the authors to challenge their place in the status quo, and consider their social and political position in society. Alongside the use of duoethnography as a reflective method, the analysis of critical incidents, is used herewith to develop our personal and professional knowledge base. We consider how our own educational experience taught us to value the perspectives of experts-by-experience in all aspects of our practice, investigating the disclosure of our own self and identity in this process; furthermore we consider the importance of incorporatin...
Shared decision-making (SDM) between mental health medication prescribers and service users is a ... more Shared decision-making (SDM) between mental health medication prescribers and service users is a central pillar in the recovery approach, because it supports people experiencing mental ill-health to explore their care and treatment options to promote their well-being and to enable clinicians to gain knowledge of the choices the service user prefers. SDM is receiving increasing recognition both in the delivery of physical and mental health services; and as such, is of significance to current practice. As an expert-by-experience with over 30 years of receiving mental health treatment, I have made many choices about taking medication and accessing other forms of support. The experiences of SDM have been variable over my career as a service user: both encounters when I have felt utterly disempowered and interactions when I have led decision-making process based on my expertise-by-experience. In this article, I recount two experiences of exploring care and treatment options: firstly, a d...
The Journal of Mental Health Training, Education and Practice, 2018
PurposeThe purpose of this paper is to reflect on the development of a recovery-oriented training... more PurposeThe purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning.Design/methodology/approachA small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development.FindingsReflections on the advisory group process are described that led to the co-production...
Many large studies have complex advisory committee structures, yet there is no empirical evidence... more Many large studies have complex advisory committee structures, yet there is no empirical evidence regarding their optimal composition, scope and contribution. The aim of this study was to inform the committee and advice infrastructure for future research studies. In the context of a five-year study funded by the UK National Institute for Health Research, three advisory committees were formed. In addition, advice was obtained from individual experts. All recommendations received in the start-up phase (first seven months) of the study were recorded, along with the decision about implementation of the recommendation. A particular focus was on the impact of public involvement. A total of 172 recommendations were made, including 70 from 20 individual experts. The recommendations were grouped into five emergent themes: Scientific, Pragmatic, Resources, Committee and Collaboration. Most recommendations related to strengthening existing components or adding new components to the study proto...
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Papers by Joanna Fox