Zoë V.R. Boden

On the Brink of Genuinely Collaborative Care Experience-Based Co-Design in Mental Health

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. For young people with psychosis, being hospitalized is often distressing, and can lead to disengagement with mental health services. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We used an adapted form of experience-based co-design (EBCD), a participatory action-research method for collaboratively improving health care services. The use of EBCD is still relatively novel in mental health settings, and we discuss how we adapted the methodology, and some of the implications of using EBCD with vulnerable populations in complex services. We reflect on both the disappointments and successes and give some recommendations for future research and methodological development.

Understanding More Fully: A Multimodal Hermeneutic-Phenomenological Approach

This article shares a research methodology that we argue supports human science researchers in their aim to understand lived experiences more fully. Drawing on Merleau-Pontian thinking, the article outlines three dimensions of sense experience that underpin our approach: the felt-sense, aesthetic aspects of language, and visual imagery. We then detail this approach: the data-collection phase is a creative interviewing method, adapted from Imagery in Movement Method (Schneier 1989) and focusing technique (Gendlin 1997). This results in multimodal data: drawings, and bodily and verbal accounts, rich in imagery. The analysis is an expanded hermeneutic-phenomenology, and in this article we focus in particular on our method for interpreting visual data. Three examples taken from a case-study about feeling guilty are provided to illustrate the potential of the approach. The article concludes with some reflections on the impact of using a multimodal approach in human science research.

Feelings and Intersubjectivity in Qualitative Suicide Research

In this article, we explore how feelings permeated our qualitative research on suicide. Drawing on phenomenological theory, we argue for the epistemic and ethical importance of the feelings that emerge through research encounters, considering them to be embodied, intersubjective, and multilayered, and requiring careful interpretation through a “reflexivity of feelings.” We sketch a tentative framework of the ways that we experienced feelings in our research and give three in-depth examples to illustrate some of the different layers and types of feelings we identified. We reflexively interpret these feelings and their role in our analysis and then discuss some of the ethical and methodological issues related to examining feelings in suicide research, and research more generally.

Non-attendance at psychological therapy appointments

Purpose: Research demonstrates that non-attendance at healthcare appointments is a waste of scarce resources; leading to reduced productivity, increased costs, disadvantaged patients through increased waiting times, and demoralised staff. This study investigated non-attendance and implemented interventions to improve practice. Methodology: A mixed methods service audit took place in a primary care psychological therapies service. Existing service guidelines and reporting systems were reviewed. A cross-sectional design was used to compare a year’s cohort of completers of cognitive behavioural therapy (N=140) and drop-outs (N=61). Findings: Findings suggested contrasting guidelines and clinically inaccurate reporting systems. The overall service DNA (Did Not Attend) rate was 8.9%; well below rates suggested in the literature. The drop-out rate from cognitive behavioural therapy (CBT) was 17%. The most influential factor associated with CBT drop-out was the level of depression. The level of anxiety, risk ratings and deprivation scores were also different between completers and drop-outs. The main reasons given for non-attendance were forgetting, being too unwell to attend, having other priorities, or dissatisfaction with the service; again these findings were consistent with prior research. Conclusions: A range of recommendations for practice are made, many of which were implemented with an associated reduction in the DNA rate.

The experiential impact of hospitalisation: parents' accounts of caring for young people with early psychosis

This research examines the experiential impact of hospitalisation on the parents of young people with early psychosis. In-depth interviews were conducted with a small sample of parents, and the resulting transcripts were analysed using Interpretative Phenomenological Analysis. Five themes emerged from the data: Accepting and blaming, Feeling out of control, Hospitalisation as temporary containment, Feeling let down by services and Stigma. Aspects of the hospitalisation process were characterised by parents as generally negative, but a number of positive affirmations were also offered regarding the containing, supportive and crucial role of services. Parents’ perceptions of hospitalisation as a difficult, and sometimes distressing, experience are exacerbated by the complexity of being the carer of a young person. Negotiating services and boundaries within the context of this relationship contributes to feelings of exclusion and disregard by professionals and services. The implications of this study resonate with the current government mental health strategy with regard to how services can engage and include carers in the mental health system, and equip and enable them to support their relatives with early psychosis.

If psychosis were cancer: A speculative comparison.

Recently, health policy in the UK has begun to engage with the concept of ‘parity of esteem’ between physical and mental healthcare. This has led one recent initiative to improve service provision for first episode psychosis, which aims to bring it into line with some of the principles underpinning good practice in cancer care. In this paper, we consider some of the metaphorical consequences of likening psychosis to cancer. While we find the comparison unhelpful for clinical purposes, we argue that it can be a helpful lens through which to examine service provision for psychosis in young people. Through this lens, specialist community-based services would appear to compare reasonably well. Inpatient care for young people with psychosis, on the other hand, suffers very badly by comparison with inpatient facilities for teenage cancer care. We note some of the many positive features of inpatient cancer care for young adults, and—drawing upon previous research on inpatient psychiatric care—observe that many of these are usually absent from mental health facilities. We conclude that this metaphor may be a helpful rhetorical device for communicating the lack of ‘parity of esteem’ between mental and physical healthcare. This inequity must be made visible in health policy, in commissioning, and in service provision.

Terror and Horror: Feelings, Intersubjectivity and ‘Understanding at the Edges’ in an Interview on a Suicide Attempt

This chapter explores how we can understand suicidal experience more fully and what it means to reach the edges of our understanding. It draws on the case of ‘Roddy’, a research participant whose account of his suicide attempt was marked by experiences of terror and horror. Drawing on phenomenological understandings about the epistemic importance of feelings, I make an argument that we need to critically explore our embodied intersubjective encounters and our emotional worlds, in order to more fully understand suicidal experience. Roddy’s traumatic suicide attempt is hard to communicate, but gaining others’ understanding is imperative for Roddy’s self-understanding and recovery. I consider the visceral and poetic language Roddy uses to help communicate the terror and horror of his experience. I then consider the implications of this—what happens to me, as the listener, when I reach the edges of my capacity for deep, authentic understanding. The chapter concludes with some thoughts about feelings, autobiographical narratives and understanding. I suggest that our communities need to develop more spaces where people can talk about the terror and horror of their suicide attempts safely and openly. I conclude that researchers (and perhaps also clinicians) need to honestly interrogate what happens for them at the edges of their understanding, when listening to such accounts.

On the Brink of Genuinely Collaborative Care

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. For young people with psychosis, being hospitalized is often distressing, and can lead to disengagement with mental health services. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We used an adapted form of experience-based co-design (EBCD), a participatory action-research method for collaboratively improving health care services. The use of EBCD is still relatively novel in mental health settings, and we discuss how we adapted the methodology, and some of the implications of using EBCD with vulnerable populations in complex services. We reflect on both the disappointments and successes and give some recommendations for future research and methodological development.

On the Brink of Genuinely Collaborative Care: Reflections on the Use of Experience-based Co-design for Translating Qualitative Research into Service Development

Inpatient mental health services in the United Kingdom are currently dissatisfactory for service-users and staff. For young people with psychosis, being hospitalized is often distressing, and can lead to disengagement with mental health services. This article describes how we took three qualitative research studies about hospitalization in early psychosis (exploring the perspectives of service-users, parents, and staff) and translated them into service improvements developed in collaboration with a range of stakeholders, including service-users, carers, community and inpatient staff, and management. We used an adapted form of experience-based co-design (EBCD), a participatory action-research method for collaboratively improving health care services. The use of EBCD is still relatively novel in mental health settings, and we discuss how we adapted the methodology, and some of the implications of using EBCD with vulnerable populations in complex services. We reflect on both the disappointments and successes and give some recommendations for future research and methodological development.