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Videos by Amanda Roberts

This video suggests how patient-led change can support those with a life-limiting illness to live... more This video suggests how patient-led change can support those with a life-limiting illness to live the life they choose until they die.

2 views

Papers exploring palliative care by Amanda Roberts

Health, 2024

A life-limiting illness can erode an individual's positive sense of self. Storytelling can help c... more A life-limiting illness can erode an individual's positive sense of self. Storytelling can help counteract this, through scaffolding patients' agency and supporting them in acting to change something which matters to them. This article explains how visual stories-comics-are used within the PATCHATT intervention to support the redevelopment of a person's agential self. Through the provision of a conceptual map, this article explores the gutter as a liminal space, arguing for the importance of the deep reader engagement which takes place there. It uses Bob's comic, a story used within PATCHATT, to explore how reflexivity and imagination work together within the liminal space of the gutter to stimulate and enhance palliative care patients' agential change leadership. It concludes by considering the implications of the argument put forward for palliative care practice.

Serious illness can diminish a person’s sense of positive self, a viewpoint often reinforced by s... more Serious illness can diminish a person’s sense of positive self, a viewpoint often reinforced by society. This paper explores ways in which adults with a life-limiting illness can challenge dominant conceptualisations of the terminally ill through becoming agents of change. It introduces the PATCHATT initiative, where, in online support groups, individuals with a life-limiting illness share something they want to make a difference to and are supported by peers and facilitators to plan for and lead this change.

This paper argues that such activity should be seen as health activism, where the status quo is challenged by individuals motivated by moral purpose. Whilst the coping strategies evidenced by many with a life-limiting illness are more than adequate indicators that they possess the bravery, tenacity and hope needed to bring about change, the processes which support them in becoming health activists are less well understood. Engaging with comics which exemplify change leadership is one such process used in PATCHATT.

This paper concludes with an exploration of how comics exemplifying patient-led change can catalyse health activism. It argues that responding to the visual stories of others in a similar situation allows patients with a terminal illness to become active agents of change.

A terminal diagnosis can diminish an individual's sense of agency and identity. Leading change ap... more A terminal diagnosis can diminish an individual's sense of agency and identity. Leading change appears to restore a sense of agential self. The first phase of this literature review explores factors influencing patient-led change across the palliative care ecosystem. The second phase illuminates how storytelling can support palliative care patients in leading ecosystem-wide change. 35 studies were identified in Phase 1 and 36 in Phase 2. This research highlights the need to situate patient leadership activity within a palliative care ecosystem to understand factors likely to support or hinder patient leadership activity within it. The evidence indicates the potential use of storytelling to support patients with a life-limiting illness to lead change across the palliative care ecosystem. This challenges current conceptualisations of such patients and offers them instead as an additional source of palliative care support.

Journal of Applied Arts and Health, 2022

The COVID-19 pandemic acted as a catalyst for the programme explored in this article. Developed t... more The COVID-19 pandemic acted as a catalyst for the programme explored in this article. Developed to fill a gap in face-to-face support programmes for those with a life-limiting illness, the Live Well, Die Well programme offered participants the opportunity to experiment with various art-forms in online workshops. This article reveals the content and practice of three workshops facilitated by the author who uses this experience to begin an exploration of the connection between artmaking, illness, identity and agency. Critiquing the relevance of the art therapy literature to this programme, the author explores the key role online artmaking can play in ameliorating the 'total pain' often experienced at the end of life.

Journal of Clinical Ethics, 2022

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limit... more The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decisionmaking practice.

OMEGA: Journal of death and dying, 2021

The Covid-19 crisis led to an increase in the 'total pain' of many terminally ill patients who fa... more The Covid-19 crisis led to an increase in the 'total pain' of many terminally ill patients who faced a reduction in support, due to the temporary closure of front-line palliative day therapy services. A hospice volunteer, I instigated an online day therapy programme for patients previously attending face-to-face day therapy. Participant feedback revealed the importance of providing a space for ongoing peer support for participants' changing sense of identity, an issue for time-limited day therapy programmes. An exploration of key concepts associated with palliative care established the multiple connections between such changing identity and arts-based approaches to living well. This article charts how I used this understanding to develop an alternative, online arts-based support programme, Live well, die well. It explores the links between ongoing mutual support, arts-based activity and the reactions to a shifting identity in patients with a life-limiting illness.

Academia Letters, 2021

In this Letter, I consider what I have learned from my first attempt to facilitate a series of co... more In this Letter, I consider what I have learned from my first attempt to facilitate a series of collaborative, online storymaking workshops, developed during the COVID-19 pandemic. The workshops were part of a wider arts-based programme, Live well, die well, which aimed to empower individuals with life-limiting illnesses to live well, within the boundaries of their condition, through learning with, and supporting, one another. The programme provides participants with opportunities to: • make positive connections with others with a life-limiting illness • gain validation for a shifting identity as their illness progresses • gain reciprocal support and understanding • enjoy arts-based activity which stimulates reflection and learning • develop confidence and skill in initiating conversations about life and death The collaborative storymaking workshops sit within the second unit of the programme, Gripping Yarns, which takes place over four weeks, through a weekly, 1-hour online session. Here, participants explore a variety of story forms and engage in individual and collaborative storymaking, in order to reflect on their life experience. Five participants accessed the first iteration of the Gripping Yarns workshops. I was particularly intrigued by their response to collaborative storymaking activities. By collaborative

Progress in Palliative Care

This article charts the learning from an online, artmaking programme supporting individuals with ... more This article charts the learning from an online, artmaking programme supporting individuals with a lifelimiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants' comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.

Palliative care conference presentations by Amanda Roberts

RSM - Evidence and impact: A palliative care perspective, 13 Dec. 2021, 2021

This poster demonstrates the use of the 2021 Medical Research Council/National Institute for Heal... more This poster demonstrates the use of the 2021 Medical Research Council/National Institute for Health Research (MRC/NIHR) (Skivington et al., 2021) framework to support the design of an appropriate evaluation approach for the Patients Changing Things Together (PATCHATT) programme, a complex intervention supporting adults experiencing serious health-related suffering to lead change. The programme seeks to augment current approaches to palliative care by conceptualising patients as assets (WHO, 1986) with a well-developed understanding of how to make a positive change to their healthcare. Through a series of facilitated online workshops, programme participants are supported to identify an area of concern and lead action to address it. The programme tackles the sense of diminished self which often accompanies a terminal diagnosis through enhancing participants’ agency (Bandura, 1977). It seeks to bring about system-level change, providing an approach to citizen empowerment, strengthened communities and increased NHS capacity.

This poster considers the applicability of ecosystems thinking (Sudbury-Riley and Hunter-Jones, 2021). to the design and evaluation of complex interventions such as the PATCHATT programme. Challenging the position of randomised controlled trials (RCTs) at the apex of the healthcare research hierarchy, it explores how the use of diverse research perspectives and approaches can more faithfully reveal the patient experience of palliative care. Developing the emergent discourse around graphic medicine, that is, the use of comics to tell stories of health experiences (Wombles, 2021), the poster discusses the use of patient-created comic strips to support the leadership of change. It details the planned use of comic strips within the PATCHATT programme as an evaluation device, to support both practice development and theoretical understanding of innovative approaches to palliative care. It illustrates how the use of comics can meet the MRC/NIHR framework’s six core elements of evaluation design and fulfil the authors’ demand for the use of pragmatism and creativity in complex intervention development and evaluation.

References

Bandura, A. (1977) Self-efficacy: Toward a Unifying Theory of Behavioral Change. Psychological Review, 84(2), 191-215.

Skivington, K., Matthews L., Simpson, S.A., Craig, P., Baird, J., Blazeby, J.M., Boyd, K., Craig, N., French, D., McIntosh, E., Petticrew, M., Rycroft-Malone, J., White, M. and Moore, L. (2021) Framework for the development and evaluation of complex interventions: gap analysis, workshop and consultation-informed update. Health Technology Assessment, 25(57).

Sudbury-Riley, L. and Hunter-Jones, P. (2021) Facilitating inter-professional integration in palliative care: A service ecosystem perspective. Science and Medicine, 277(9).

Wombles, C. (2021) Graphic Medicine: Comics as a Patient Education Resource, Journal of Consumer Health on the Internet, 25:3, 310-318, Retrieved 3.11.21 from DOI: 10.1080/15398285.2021.194993
World Health Organisation (1986) Ottawa Charter for Health Promotion. Retrieved 5 August 2021 from https://www.euro.who.int/__data/assets/pdf_file/0004/129532/Ottawa_Charter.pdf

Videos exploring the PATCHATT initiative by Amanda Roberts

The use of comics in developing and evaluating the PATCHATT initiative

This video explores how comics are being used withn the PATCHATT initiative to support and evalua... more This video explores how comics are being used withn the PATCHATT initiative to support and evaluate patient-led change.

This video introduces Bob, a PATCHATT group member, and follows his story of change leadership.

Papers exploring leadership development by Amanda Roberts

Educational Management Administration & Leadership, 2018

In the context of evolving global challenges and opportunities, this article explores the kind of... more In the context of evolving global challenges and opportunities, this article explores the kind of leadership that moves beyond the philosophy of dependence which pervades many of the everyday assumptions of educational leadership practice. The article argues for educational leadership that places relational freedom, self-determination, and critical reflexivity as the driving aim of distributed leadership by teachers, students and others in non-positional leadership roles. A project arising from the International Teacher Leadership initiative is examined in order to offer practical illustration.

British Educational Research Journal

This video suggests how patient-led change can support those with a life-limiting illness to live... more This video suggests how patient-led change can support those with a life-limiting illness to live the life they choose until they die.

2 views

Health, 2024

A life-limiting illness can erode an individual's positive sense of self. Storytelling can help c... more A life-limiting illness can erode an individual's positive sense of self. Storytelling can help counteract this, through scaffolding patients' agency and supporting them in acting to change something which matters to them. This article explains how visual stories-comics-are used within the PATCHATT intervention to support the redevelopment of a person's agential self. Through the provision of a conceptual map, this article explores the gutter as a liminal space, arguing for the importance of the deep reader engagement which takes place there. It uses Bob's comic, a story used within PATCHATT, to explore how reflexivity and imagination work together within the liminal space of the gutter to stimulate and enhance palliative care patients' agential change leadership. It concludes by considering the implications of the argument put forward for palliative care practice.

Serious illness can diminish a person’s sense of positive self, a viewpoint often reinforced by s... more Serious illness can diminish a person’s sense of positive self, a viewpoint often reinforced by society. This paper explores ways in which adults with a life-limiting illness can challenge dominant conceptualisations of the terminally ill through becoming agents of change. It introduces the PATCHATT initiative, where, in online support groups, individuals with a life-limiting illness share something they want to make a difference to and are supported by peers and facilitators to plan for and lead this change.

This paper argues that such activity should be seen as health activism, where the status quo is challenged by individuals motivated by moral purpose. Whilst the coping strategies evidenced by many with a life-limiting illness are more than adequate indicators that they possess the bravery, tenacity and hope needed to bring about change, the processes which support them in becoming health activists are less well understood. Engaging with comics which exemplify change leadership is one such process used in PATCHATT.

This paper concludes with an exploration of how comics exemplifying patient-led change can catalyse health activism. It argues that responding to the visual stories of others in a similar situation allows patients with a terminal illness to become active agents of change.

A terminal diagnosis can diminish an individual's sense of agency and identity. Leading change ap... more A terminal diagnosis can diminish an individual's sense of agency and identity. Leading change appears to restore a sense of agential self. The first phase of this literature review explores factors influencing patient-led change across the palliative care ecosystem. The second phase illuminates how storytelling can support palliative care patients in leading ecosystem-wide change. 35 studies were identified in Phase 1 and 36 in Phase 2. This research highlights the need to situate patient leadership activity within a palliative care ecosystem to understand factors likely to support or hinder patient leadership activity within it. The evidence indicates the potential use of storytelling to support patients with a life-limiting illness to lead change across the palliative care ecosystem. This challenges current conceptualisations of such patients and offers them instead as an additional source of palliative care support.

Journal of Applied Arts and Health, 2022

The COVID-19 pandemic acted as a catalyst for the programme explored in this article. Developed t... more The COVID-19 pandemic acted as a catalyst for the programme explored in this article. Developed to fill a gap in face-to-face support programmes for those with a life-limiting illness, the Live Well, Die Well programme offered participants the opportunity to experiment with various art-forms in online workshops. This article reveals the content and practice of three workshops facilitated by the author who uses this experience to begin an exploration of the connection between artmaking, illness, identity and agency. Critiquing the relevance of the art therapy literature to this programme, the author explores the key role online artmaking can play in ameliorating the 'total pain' often experienced at the end of life.

Journal of Clinical Ethics, 2022

The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limit... more The Patients Changing Things Together (PATCHATT) programme supports individuals with a life-limiting illness to lead a change that matters to them. Individuals join a facilitated online peer support group to identify an issue they feel strongly about, plan for change and take action to bring that change about. The programme is developed and guided by a Programme Advisory Group with clinical and lay membership. This article charts the trialling of the patients changing thing together ethics pack, designed to support all members of the Programme Advisory Group in taking an equal role in ethical decision-making as they guide the programme's ongoing development. As a trial of its efficacy, the pack was used by the author to consider an ethical dilemma at the heart of the development of the Patients Changing Things Together programme, that is, is it ethical to offer a community palliative care programme which has the potential to bring participants harm as well as good? The author reports a strong ethical argument for offering this programme, while concluding the need for the Programme Advisory Group to make the final decision, using the Patients Changing Things Together ethics pack to consider the results of the evaluation of the programme's pilot. The article concludes that this pack provides an effective tool to guide ethical novices through the ethical complexities of developing a community-based palliative care intervention programme. It raises the issue that such inclusivity is achieved through a normative decision-making process which denies the fluidity and creativity which may inform the best ethical decisionmaking practice.

OMEGA: Journal of death and dying, 2021

The Covid-19 crisis led to an increase in the 'total pain' of many terminally ill patients who fa... more The Covid-19 crisis led to an increase in the 'total pain' of many terminally ill patients who faced a reduction in support, due to the temporary closure of front-line palliative day therapy services. A hospice volunteer, I instigated an online day therapy programme for patients previously attending face-to-face day therapy. Participant feedback revealed the importance of providing a space for ongoing peer support for participants' changing sense of identity, an issue for time-limited day therapy programmes. An exploration of key concepts associated with palliative care established the multiple connections between such changing identity and arts-based approaches to living well. This article charts how I used this understanding to develop an alternative, online arts-based support programme, Live well, die well. It explores the links between ongoing mutual support, arts-based activity and the reactions to a shifting identity in patients with a life-limiting illness.

Academia Letters, 2021

In this Letter, I consider what I have learned from my first attempt to facilitate a series of co... more In this Letter, I consider what I have learned from my first attempt to facilitate a series of collaborative, online storymaking workshops, developed during the COVID-19 pandemic. The workshops were part of a wider arts-based programme, Live well, die well, which aimed to empower individuals with life-limiting illnesses to live well, within the boundaries of their condition, through learning with, and supporting, one another. The programme provides participants with opportunities to: • make positive connections with others with a life-limiting illness • gain validation for a shifting identity as their illness progresses • gain reciprocal support and understanding • enjoy arts-based activity which stimulates reflection and learning • develop confidence and skill in initiating conversations about life and death The collaborative storymaking workshops sit within the second unit of the programme, Gripping Yarns, which takes place over four weeks, through a weekly, 1-hour online session. Here, participants explore a variety of story forms and engage in individual and collaborative storymaking, in order to reflect on their life experience. Five participants accessed the first iteration of the Gripping Yarns workshops. I was particularly intrigued by their response to collaborative storymaking activities. By collaborative

Progress in Palliative Care

This article charts the learning from an online, artmaking programme supporting individuals with ... more This article charts the learning from an online, artmaking programme supporting individuals with a lifelimiting illness. The programme sought to fill a gap caused by the temporary closure of face-to-face UK hospice-based day therapy programmes during the COVID-19 pandemic. Participants' comments on this arts-based programme illustrated the sense of disrupted and diminished identity, linked to a deceased sense of agency, which terminal illness can bring. Responding to this need for increased agency led to the development of the PATCH (Palliative care patient-led change) programme. Individuals with a terminal illness will be invited to join an online collaborative group, to identify a specific issue they wish to address and to lead the change they wish to see. The PATCH group will be supported by a facilitator and a team of volunteers, whose roles will include supporting participants in planning and executing their change strategy. This article presents the conceptual underpinning for the PATCH programme, offering a tentative theory of the relationship between identity, moral purpose, agency, illness and the leadership of change for those living with a life-limiting illness. Challenging stereotypical views of palliative care patients, it explores a new community and asset-based approach to end-of-life care which supports individuals at the end of life in developing a positive self-view.

RSM - Evidence and impact: A palliative care perspective, 13 Dec. 2021, 2021

This poster demonstrates the use of the 2021 Medical Research Council/National Institute for Heal... more This poster demonstrates the use of the 2021 Medical Research Council/National Institute for Health Research (MRC/NIHR) (Skivington et al., 2021) framework to support the design of an appropriate evaluation approach for the Patients Changing Things Together (PATCHATT) programme, a complex intervention supporting adults experiencing serious health-related suffering to lead change. The programme seeks to augment current approaches to palliative care by conceptualising patients as assets (WHO, 1986) with a well-developed understanding of how to make a positive change to their healthcare. Through a series of facilitated online workshops, programme participants are supported to identify an area of concern and lead action to address it. The programme tackles the sense of diminished self which often accompanies a terminal diagnosis through enhancing participants’ agency (Bandura, 1977). It seeks to bring about system-level change, providing an approach to citizen empowerment, strengthened communities and increased NHS capacity.

This poster considers the applicability of ecosystems thinking (Sudbury-Riley and Hunter-Jones, 2021). to the design and evaluation of complex interventions such as the PATCHATT programme. Challenging the position of randomised controlled trials (RCTs) at the apex of the healthcare research hierarchy, it explores how the use of diverse research perspectives and approaches can more faithfully reveal the patient experience of palliative care. Developing the emergent discourse around graphic medicine, that is, the use of comics to tell stories of health experiences (Wombles, 2021), the poster discusses the use of patient-created comic strips to support the leadership of change. It details the planned use of comic strips within the PATCHATT programme as an evaluation device, to support both practice development and theoretical understanding of innovative approaches to palliative care. It illustrates how the use of comics can meet the MRC/NIHR framework’s six core elements of evaluation design and fulfil the authors’ demand for the use of pragmatism and creativity in complex intervention development and evaluation.

References

Bandura, A. (1977) Self-efficacy: Toward a Unifying Theory of Behavioral Change. Psychological Review, 84(2), 191-215.

Skivington, K., Matthews L., Simpson, S.A., Craig, P., Baird, J., Blazeby, J.M., Boyd, K., Craig, N., French, D., McIntosh, E., Petticrew, M., Rycroft-Malone, J., White, M. and Moore, L. (2021) Framework for the development and evaluation of complex interventions: gap analysis, workshop and consultation-informed update. Health Technology Assessment, 25(57).

Sudbury-Riley, L. and Hunter-Jones, P. (2021) Facilitating inter-professional integration in palliative care: A service ecosystem perspective. Science and Medicine, 277(9).

Wombles, C. (2021) Graphic Medicine: Comics as a Patient Education Resource, Journal of Consumer Health on the Internet, 25:3, 310-318, Retrieved 3.11.21 from DOI: 10.1080/15398285.2021.194993
World Health Organisation (1986) Ottawa Charter for Health Promotion. Retrieved 5 August 2021 from https://www.euro.who.int/__data/assets/pdf_file/0004/129532/Ottawa_Charter.pdf

The use of comics in developing and evaluating the PATCHATT initiative

This video explores how comics are being used withn the PATCHATT initiative to support and evalua... more This video explores how comics are being used withn the PATCHATT initiative to support and evaluate patient-led change.

This video introduces Bob, a PATCHATT group member, and follows his story of change leadership.

Educational Management Administration & Leadership, 2018

In the context of evolving global challenges and opportunities, this article explores the kind of... more In the context of evolving global challenges and opportunities, this article explores the kind of leadership that moves beyond the philosophy of dependence which pervades many of the everyday assumptions of educational leadership practice. The article argues for educational leadership that places relational freedom, self-determination, and critical reflexivity as the driving aim of distributed leadership by teachers, students and others in non-positional leadership roles. A project arising from the International Teacher Leadership initiative is examined in order to offer practical illustration.

British Educational Research Journal

This paper explores the potential of student-led inquiry work to support school improvement. Draw... more This paper explores the potential of student-led inquiry work to support school improvement. Drawing on the activity of Students as Researchers groups in two Hertfordshire secondary schools, it begins by discussing the impetus for schools to listen to students. It suggests that challenging students have a specific input to make. It moves on to explore emergent issues in student-led inquiry work, highlighting the significance of power relations. An examination of the potential impact of student-led inquiry work on school improvement leads to an investigation of a model of joint student/teacher-led development work. The paper concludes with some suggested implications of this study for school leaders.

Professional Development in Education, 2014

International Journal of Inclusive Education, 2014

This article analyses modes of participation which enable schools to develop as democratic commun... more This article analyses modes of participation which enable schools to develop as democratic communities of learning and leadership. It mines a rich vein of work sustained at Cambridge over many years. Contributors to this work have included Arnot. The modes of participation considered include student voice or consultation, students as researchers, participative pedagogy and student leadership. These resonate with the values of the Leadership for Learning (LfL) endeavour (MacBeath & Dempster, 2009) in which shared leadership is a cornerstone. This article explores the relationship between the key concepts of learning, participation and democracy. It draws its analysis from a series of key projects initiated under the umbrella of LfL in Cambridge in recent years, including the "Influence and Participation of Young People in their Learning" project (MacBeath et al., 2008), the "Evaluation of the Learning to Lead Initiative" project (Frost & MacBeath, 2010) and the &q...

International Journal of Leadership in Education, 2015

Educational Management Administration & Leadership

I would like to thank Dr David Frost, for his thought-provoking commentary on so many early draft... more I would like to thank Dr David Frost, for his thought-provoking commentary on so many early drafts of this thesis and Janet Roberts, for her unfailing encouragement. Finally, I would like to thank my colleague Lynn, whose comment, 'I'm not the sort of person who writes', inspired the study presented in this thesis.