The need for new perspectives on evaluation of palliative care

Grande, Gunn; Preston, Nancy

doi:10.1177/0269216311425641

Cited by 7 publications

(7 citation statements)

References 4 publications

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“…Evaluation of EOLC practice needs to be set in its broader political, cultural and organisational contexts which are difficult to control. Case studies, participatory action research, and before-and-after studies are useful ways of assessing the impact of contextual factors on EOLC, where experimental studies like Randomised Controlled Trials may not be feasible [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

Guiding practitioners through end of life care for people with dementia: The use of heuristics

et al. 2018

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BackgroundEnd of life care (EOLC) for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of heuristics which were tested in clinical settings. The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing EOLC for people with dementia in a variety of clinical and care settings.MethodsA three phase co-design process was adopted: 1) Synthesis of evidence and outputs from interviews and focus groups with family carers and practitioners, by a co-design group, to develop heuristics; 2) Testing of the heuristics in five clinical or care settings for six months; 3) Evaluation of the heuristics at three and six months using qualitative individual and group interviews.ResultsFour heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence.ConclusionUse of heuristics is a novel approach to end of life decision making in dementia which can be useful to both experienced and junior members of staff making decisions. Heuristics are a practical tool which could overcome a lack of care pathways and direct guidance in end of life care for people with dementia.

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Section: Discussionmentioning

confidence: 99%

Guiding practitioners through end of life care for people with dementia: The use of heuristics

et al. 2018

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“…Palliative and end-of-life care requires detailed recording of communication processes and service users’ feedback in addition to expert consensus on demonstrable indicators that improve outcomes 2 25. The limitations of the scientific method in measuring humane aspects of care such as dignity and attentiveness are recognised, as is the need for these factors to be fully recognised as impacting directly on the quality of care 26…”

Section: Discussionmentioning

confidence: 99%

The practice of palliative care from the perspective of patients and carers

Sampson

Finlay

Byrne

et al. 2014

BMJ Support Palliat Care

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ObjectivesThe meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers.MethodsThematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care.ResultsThe emotional experience of care is the most significant aspect documented by patients and carers. It refers to the process of care in key domains of respect, renewal, refuge and restorative care. Patients and carers described care as either enabling or directly provided. The emotional experience of care was not confined to psychosocial need and constituted a core practice drawing on professional expertise and interpersonal skills, some of which may be taken for granted by staff themselves.ConclusionsThe emotional experience of care is examined as a practice rather than a topic, acknowledging that patients and carers documented the performance of care and the resulting impact in a variety of situations. The emotional experience of care comprises key aspects of contextual care facilitating autonomy and connectedness. It is embedded in relationships mediated by communication and tenor of care. The perspective of patients and carers places the emotional experience of palliative care centrally. This has implications for future service evaluation and the incorporation of this skill-based outcome alongside more traditional outcome measures such as the amelioration of physical symptoms.

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“…The suitability of research methods used in supportive and palliative care research, and evidence that contributed to improving the research process and outcome were also explored, including issues relating to quantitative or qualitative research methodologies,6 7 participant understanding of research design or terminology; the involvement of service users in research; and the use of innovative research methods or approaches.…”

Section: Ceco's Building Research Capacity Activitiesmentioning

confidence: 99%