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Gaining in a landscape of loss : the experience of learning and using mindfulness whilst caring at the end of life

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thesis
posted on 2023-05-28, 08:29 authored by Jaffray, LM
Informal palliative caregivers, or those caring for a terminally ill family member or friend, are critical to the provision of quality, sustainable end-of-life care. The support provided by these caregivers is increasingly important, considering an ageing population, higher levels of disease burden and increasing healthcare demands. Adverse impacts of end-of-life caregiving on caregiver health and wellbeing, however, are substantial and well-documented. Despite a twenty-year global consensus calling for more evidence-based caregiver support interventions, patient-focused palliative care research, practice and policy have predominated, overshadowing a focus on caregivers. Evidence-based caregiver support therefore, remains narrow in relation to caregivers' holistic unmet needs, and experiences of caregivers 'feeling invisible' persist across studies. Emerging research indicates positive potential of contemplative self-care or stress-management approaches, such as mindfulness-based interventions (MBIs), to address the void of holistic care approaches. However, there is a lack of in-depth, qualitative understanding and conceptualisation of the process and effects of learning mindfulness in this setting. This qualitative study provides the first in-depth theoretical understanding of the experience of learning and using a mindfulness-based approach, whilst caring for a family member or friend at the end of life. Employing a constructivist grounded theory methodology (Charmaz 2006), semi-structured interviews were conducted with mindfulness facilitators (n=12) experienced in teaching mindfulness to informal palliative caregivers. In-depth interviews were also conducted with informal palliative caregivers (n=8) who had and used mindfulness in caregiving. Data was analysed concurrently with, and informed, data collection, progressing through the cycles of initial, focused and theoretical coding. Study findings have led to the development of a new grounded theory model: 'The Experience of Learning and Using a Mindfulness-based Approach in End-of-life Caregiving: A Theoretical Model'. Findings identified multiple, interwoven benefits, including mindfulness as an empowering new form of respite and a way to shift caregiver reluctance to care for themselves. This study also challenges assumptions and practice regarding prescriptive, intensive approaches to mindfulness training advanced in other settings, advocating that there is no 'one size fits all' model. This conceptual understanding of the process, outcomes and challenges of learning mindfulness as an informal palliative caregiver can inform the development and evaluation of MBIs in this setting and has significant implications for practice and further research.

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Copyright 2019 the author Appendix 2 is the following published article: Jaffray, L. Bridgman, H., Stephens, M., Skinner, T., 2015. Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: a systematic literature review, Palliative medicine, 30(2), 117-131. Copyright Copyright 2015 the authors. DOI: 10.1177/0269216315600331

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