Challenges facing palliative neurology practice: A qualitative analysis

Gofton, Teneille; Chum, Marvin; Schulz, Valerie; Gofton, B T; Sarpal, Amrita; Watling, C

doi:10.1016/j.jns.2017.12.008

Cited by 37 publications

(48 citation statements)

References 16 publications

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“…Of the 33 articles, 17 focused on MS exclusively [ 20 , 42 – 57 ] seven on MS in combination with chronic neurologic or non-neurologic illness [ 17 , 58 – 63 ]; one on MND [ 64 ] seven on neurological illness (non-specified) [ 18 , 19 , 65 – 69 ], and one on disability [ 70 ]. Nineteen were qualitative or quantitative studies [ 20 , 42 – 44 , 46 , 47 , 49 , 50 , 54 – 56 , 59 , 61 – 64 , 67 , 68 , 70 ]; one was a mixed methods study [ 19 ]; and 13 were case studies, literature reviews or discussion/opinion articles [ 17 , 18 , 45 , 48 , 51 – 53 , 57 , 58 , 60 , 65 , 66 , 69 ] of which seven were opinion or expert panel-based articles [ 17 , 18 , 48 , 51 , 53 , 58 , 66 ] three were case-studies [ 45 , 57 , 65 ] and three were lite...…”

Section: Resultsmentioning

confidence: 99%

“…The source articles reflect an international scope; two had an international authorship [ 51 , 60 ], seven from USA [ 43 , 44 , 46 , 48 , 66 , 68 , 70 ], seven from UK [ 17 , 18 , 52 , 56 – 58 , 65 ] seven from Canada [ 20 , 49 , 50 , 55 , 59 , 62 , 67 ], four from Germany [ 16 , 47 , 54 , 63 ], two from the Netherlands [ 61 , 69 ], one from Australia [ 64 ], Italy [ 53 ], Peru [ 19 ] and Turkey [ 45 ].…”

Section: Resultsmentioning

confidence: 99%

“…Ten studies supported this CMO hypothesis [17,18,48,56,57,61,65,67,70,72], which is the basis underpinning the original development of concept of ACP. Kalb explained: "people living with MS struggle to maintain a feeling of control in the face of an unpredictable disease course and uncertain future.…”

Section: Cmo 4: Acp As a Tool For Enabling Control And Autonomy In Dementioning

confidence: 86%

“…Additional to building trusting relationships, advanced communication skills are important for health professionals, many of whom are notably uncomfortable discussing death and dying [19,67,68], exacerbating an already difficult conversation. Communication skills training linked to patient-centred outcomes are recommended [77].…”

Section: Plos Onementioning

confidence: 99%

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A realist review of advance care planning for people with multiple sclerosis and their families

et al. 2020

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Background Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making. Aims To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it. Methods Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multidisciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Cmo 4: Acp As a Tool For Enabling Control And Autonomy In Dementioning

confidence: 86%

Section: Plos Onementioning

confidence: 99%

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A realist review of advance care planning for people with multiple sclerosis and their families

et al. 2020

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“…Las características específicas de las enfermedades neurológicas que afectan los cuidados paliativos y la calidad de vida de los pacientes fueron identificadas por. Gofton, et al 68 en un análisis cuantitativo: a) líneas de tiempo de progresión de la enfermedad, b) barreras a la comunicación derivadas de la enfermedad, c) variabilidad a lo largo de la progresión de la enfermedad y d) amenaza a la personalidad derivada de trastornos funcionales y cognitivos relacionados con la enfermedad neurológica. En cuanto a los desafíos que representan y complican el cuidado paliativo neurológico se mencionan: 1) incertidumbre con respecto al pronóstico, disponibilidad de apoyo y trayectoria de la enfermedad, 2) inconsistencia en información, actitudes y habilidades entre proveedores de atención, equipos de atención, cuidadores y familias, y 3) angustia existencial específica de la enfermedad neurológica, incluida la angustia emocional, psicológica y espiritual que resulta de la pérdida de la función, la autonomía y la muerte 68 .…”

Section: Resultado Del Síntomaunclassified

Abordaje de los sintomas neurológicosdesde la perspectiva de los cuidados paliativos

Alfonso

Alba

Ospina

et al. 2018

revsal

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Objetivo: Abordar los síntomas neurológicos desde la perspectiva de los cuidados paliativos a través de la revisión de literatura científica disponible teniendo en cuenta los componentes teóricos del Modelo Revisado del Manejo de Síntomas de Marylin J. Dodd. Metodología: Siguiendo los pasos propuestos por la declaración Prisma, se realizó revisión sistemática de las publicaciones realizadas entre el año 2002 y 2017 de artículos relacionados que abordaban los síntomas neurológicos desde la perspectiva del cuidado paliativo aplicando los componentes del Modelo Revisado del Manejo de Síntomas de Marylin J. Dodd, los cuales incluyen la experiencia del síntoma, los componentes de las estrategias para el manejo de síntomas y el resultado en términos del estado y el impacto del síntoma. Resultados: De los 60 articulos identificados inicalmente, 50 cumplieron con los criterios de selección y se clasificaron según las categorias de la Teoría Manejo de síntomas. Conclusiones: El aporte multidisciplinario optimiza el control de síntomas y la calidad de vida, pero son las enfermeras las responsables de detectar las respuestas humanas y distinguir entre el dolor y la agitación, equilibrar los riesgos de sub y sobremedicación y la posibilidad de acelerar la muerte. Se necesitan enfoques innovadores para alinear los comportamientos profesionales de la salud con el mejor cuidado donde se incluya una atención integral que mejore significativamente la atención al paciente.

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Short-term Palliative Care for Advanced Neurologic Disease

Brizzi

2020

JAMA Netw Open

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The benefits of a palliative care approach to patients with chronic and progressive neurologic conditions has garnered increasing interest over recent years. In the article by Gao et al, 1 the authors describe their work investigating the effectiveness of a short term integrated palliative care (SIPC) intervention for patients with advanced neurologic disease. Patients with Parkinson disease, multiple sclerosis, multiple system atrophy, progressive supranuclear palsy, and amyotrophic lateral sclerosis were recruited along with their caregivers to participate in a study across 7 hospitals in the United Kingdom. Patients were randomized to receive SIPC vs standard care for 12 weeks followed by the

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Challenges facing palliative neurology practice: A qualitative analysis

Cited by 37 publications

References 16 publications

A realist review of advance care planning for people with multiple sclerosis and their families

A realist review of advance care planning for people with multiple sclerosis and their families

Abordaje de los sintomas neurológicosdesde la perspectiva de los cuidados paliativos

Short-term Palliative Care for Advanced Neurologic Disease

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