From artmaking to changemaking: Conceptualizing the PATCH (Palliative care patient-led change) programme (original) (raw)
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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 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.
Reaching for the rainbow: person-centred practice in palliative care
International Practice Development Journal, 2020
Background: Person-centred practice is inherently integrated in palliative care. However, it cannot be assumed that its underpinning values are lived out in day-today practice in a hospice. At St Columba's Hospice, Edinburgh, the five-year strategy demonstrated commitment to person-centredness and this prompted an 18-month project focusing on the evaluation and development of a person-centred culture, taking a practice development approach. Aim: To implement a person-centred practice development research project to assess, evaluate and enhance person-centred culture within St Columba's Hospice. Methods: The theoretical underpinnings of the programme were based on the Person-centred Practice Framework. A transformative practice development approach was employed to bring about change in individuals and teams. Twelve multidisciplinary team members from different departments across the hospice formed a core research project group, which was allocated 10 protected learning and development days over the 18-month period. To assess the existing culture, data were collected at the beginning of the practice development programme, including observation in practice and real-time interviews with patients and staff. The data were analysed using a participatory approach, with group members mapping the data collected against the Person-centred Practice Framework and undertaking creative hermeneutic analysis. Discussion: The project created and sustained a space to explore and expose person-centredness within the hospice and raised awareness of what person-centred culture means in day-today practice. Fourth-generation evaluation highlighted further areas for action, with teams developing their own action plans aimed at enhancing person-centred culture. Conclusion and implications for practice: The context of day-today practice in a hospice setting is complex, and developing person-centred culture is an ongoing process. Hospices can help their staff to flourish by providing the necessary space to reflect and for critical awareness of own practices to be heightened. This could encourage staff to embrace the contradictions inherent in the work they undertake and to learn from it in order to improve their own wellbeing.
Academic Thesis, 2012
ABSTRACT “You matter because you are you. You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die” (Saunders, 1976:1005) This statement is the starting point for this research. Helping people to live until they die is the core philosophy of the modern hospice movement and is fulfilled through an ethos within the palliative care sector of providing the best quality of life for patients and their families for as long as possible. For many patients, quality of life includes involvement in an artistic activity. The aim of this research is to explore interventions which are available to patients in palliative care settings, with a view to making recommendations towards the future development of this emerging area. Taking an overview of arts and health in Ireland and overseas, the core concept of the healing potential of art as part of an holistic approach to patient care is explored, and the relevance of arts in palliative care settings is examined. The range of arts activities available in these settings is identified and the provision is found to be uneven. Activities are themed as art in the environment, arts facilitation, community art and arts therapies. The significance of the patient centred care principle is discussed, as is the importance of accepting when patients decline to participate. The effects of involvement in these arts interventions on patients, families and staff are explored and found to be largely positive. They include benefits connected to self-esteem, autonomy, identity, celebration, consolation and communication. The level of research and evaluation in this area is low, but there is much interest among practitioners in improving this situation. The challenge of identifying a method of evaluation which could satisfy both sides of the arts and health equation is addressed. Investigating the challenges and potential barriers to future development – contextual, intrinsic, administrative, interpersonal and policy-related – it emerges that many of these are dependent on the co-operation and ‘buy-in’ of the staff. The importance of relationship building with the medical and healthcare staff is examined and a number of practical suggestions are offered in this regard. The final objective of the study is to offer recommendations towards the future development of arts in palliative care settings. The reliance to date on champions of the arts within the health sector is recognised as being unsustainable and a number of realistic and achievable future actions related to training, partnerships, advocacy and funding are presented.
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 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.
2013
Purpose: To demonstrate that practice development is an effective strategy to enable an aged care team to embed a palliative approach to care of dying people into practice culture. Method: Practice development methodology was integrated with an action research evaluation framework, as a systematic and reflexive process of inquiry aimed at achieving innovative and transformative end of life care. Drawing on multiple sources of observational, group and interview data, evidence-based guidelines and the use of arts-informed active learning methods, a multidisciplinary aged care team explored personal and professional values and beliefs about principles of care delivery. These were creatively translated into meaningful expressions of evidence-informed end of life care and embedded into daily clinical practice. Results: Reflexive analysis of multiple sources of data, alongside the use of evidence-based guidelines, supported the collaborative development of a 'palliative care chest of drawers' (PCCOD). As an artefact and one outcome of using practice development in the implementation of a palliative approach to care, the PCCOD brought visible, shared meanings and new ways of working to support care of people who are dying, their families, other facility residents and staff. The PCCOD enabled the aged care team to embed practice innovations into normative patterns of care. Conclusion: Practice development strategies are effective in enabling practitioner-led innovation in clinical practice through integrated inquiry and transformative processes. Implications for practice: The use of a practice development, arts-informed approach:
The role of art-making in identity maintenance: case studies of people living with cancer
European Journal of Cancer Care, 2006
The aim of this qualitative research was to understand why some people with cancer take up art as a leisure activity, and how visual art-making in daily life might support identity maintenance/ reconstruction. The study forms part of a larger project with people who view art-making as a resource for living with chronic illness. In order to provide a detailed, holistic analysis, the paper focuses on the accounts and artwork of three participants, two women (aged 47 and 59) each with breast cancer, and a man (aged 51) with stomach and lung cancer. The participants turned to art after a process of reflection but did not necessarily reject their pre-illness lifestyles or selves. Rather, art-making afforded many opportunities to retain familiar personal and social identities, and to resist being dominated by labels related to their illness. A practical implication is that people coping with cancer may need not only cognitive and emotional support, but opportunities to find meaningful activities. Such activities can be understood to have a powerful role in maintaining a familiar, positive identity in cancer, and providing a resource for coping.
Journal of Pain and Symptom Management, 2018
The total quality of life at the posttest phase of the participants in the experimental group was significantly higher than that of the control group (t¼2.15; p<.05). Specifically, physical well-being and functional well-being dimension scales (from the quality of life total instrument) for the experimental group were statistical significantly higher than those of the control group (t¼3.14 , p<.01; t¼2.12, respectively; p<.05). Other dimensions, social well-being and emotional well-being dimension were similar to the control group (t¼.31, p>.05; t¼-.66, respectively; p>.05). Conclusion: The Dharma Creative Art Therapy Program is an effective complementary health approach method that nurses can use to enhance quality of life among cancer patients with palliative care. Further study should include a longitudinal design and to measure the length of time the effect of this program is sustained. Other future studies should test the effect of the program on other outcomes, such as spiritual well-being, using an appropriate scale, developed from Thai culture.