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1.
Death Stud ; : 1-10, 2024 Apr 04.
Article in English | MEDLINE | ID: mdl-38573791

ABSTRACT

Volunteers are a popular unpaid support role in end of life care yet how accompaniment influences the dying is underdeveloped. This study examined how companionship works, for whom, in what circumstances and why. Initial realist ideas were developed through participant observation (14 months), document analysis, and realist interviews with companionship trainers (n = 6). Theory testing involved volunteer interviews (n = 7), accounts from the dying, proxy accounts for the dying, and written reflections from companionship training. Companionship helps people live well until they die, prepare for death, and experience a good death. Four areas of volunteering explain these outcomes namely a loving friend, a holistic presence, a non-judgmental intermediary, and wrap around care. The four areas activate mechanisms related to reminiscing, preserving dignity/personhood, and easing suffering, contingent on specific contexts. The findings unpack how volunteering exerts its influence and what contextual factors facilitate outcomes, advancing the knowledge in this area.

2.
Palliat Med ; 37(3): 413-420, 2023 03.
Article in English | MEDLINE | ID: mdl-36732901

ABSTRACT

BACKGROUND: Palliative care requires innovative methods to understand what works, for whom, in what circumstances and why. Realist evaluation has become one prominent approach due to its preoccupation with building, and testing, causal theories to explain the influence of contextual factors on outcomes. Undertaking realist evaluation is not without challenges and may amplify issues of underrepresentation, disempower those working in palliative care, and produce results with poor ecological validity. Complementary approaches are needed which mitigate these challenges, whilst producing credible findings that advances knowledge. PURPOSE: In this article it is outlined how realist evaluation provides a toolkit to advance research to explain, and empirically test, the complex contours of palliative care. Moreover, it is proposed that transformative evaluation can provide a catalyst to engage and empower those within palliative care, create the opportunity for care transformation, and produce more informed and authentic theories. DISCUSSION: Contemporary issues in palliative care pertain to the complexity of palliative care, the insufficiency of experimental designs alone, and the challenges of achieving inclusive research participation. In this article it is argued that theory led, participatory, opportunistic and naturalistic approaches can provide an antidote to the issues in the literature. The combination also mitigates many methodological critiques of the individual approaches, by increasing the transformative potential of realist evaluation, and explanatory potential of transformative evaluation.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Research Design , Death
3.
Palliat Med ; 32(1): 185-194, 2018 01.
Article in English | MEDLINE | ID: mdl-28786322

ABSTRACT

BACKGROUND: In interactions between professional caregivers, patients and family members at the end of life, silence often becomes more prevalent. Silence is acknowledged as integral to interpersonal communication and compassionate care but is also noted as a complex and ambiguous phenomenon. This review seeks interdisciplinary experience to deepen understanding of qualities of silence as an element of care. AIM: To search for published papers which describe professional caregivers' experience of silence as an element of care, in palliative and other clinical, spiritual and pastoral care settings and to synthesise their findings. DESIGN: Meta-ethnography: employing a systematic search strategy and line-of-argument synthesis. DATA SOURCES: PsycINFO and seven other cross-disciplinary databases, supplemented by hand-search, review of reference lists and citation tracking. No date range was imposed. Inclusion criteria focused on reported experience of silence in professional caregiving. Selected papers ( n = 18) were appraised; none were rejected on grounds of quality. RESULTS: International, interdisciplinary research and opinion endorses the value of silence in clinical care. As a multi-functional element of interpersonal relationships, silence operates in partnership with speech to support therapeutic communication. As a caregiving practice, silence is perceived as particularly relevant in spiritual and existential dimensions of care when words may fail. CONCLUSION: Experience of silence as an element of care was found in palliative and spiritual care, psychotherapy and counselling supporting existing recognition of the value of silence as a skill and practice. Because silence can present challenges for caregivers, greater understanding may offer benefits for clinical practice.


Subject(s)
Attitude to Death , Caregivers/psychology , Family/psychology , Palliative Care/psychology , Pastoral Care/methods , Spirituality , Terminal Care/psychology , Adult , Aged , Aged, 80 and over , Anthropology, Cultural , Family/ethnology , Female , Humans , Male , Middle Aged , Palliative Care/methods , Terminal Care/methods
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