scholarly journals Toku toa, he toa rangatira: A qualitative investigation of New Zealand Māori end of life care customs

2018 ◽  
Vol 13 (2) ◽  
pp. 30-46 ◽  
Author(s):  
Tess Moeke-Maxwell ◽  
Rawiri Wharemate ◽  
Stella Black ◽  
Kathleen Mason ◽  
Janine Wiles ◽  
...  
Keyword(s):  
End Of Life ◽  
Ethnic Diversity ◽  
End Of Life Care ◽  
Extended Family ◽  
Indigenous Communities ◽  
Urban Migration ◽  
Life Care ◽  
Kaupapa Māori ◽  
Specific Care ◽  
High Level

Informal end of life caregiving will increase over the next 30 years in line with the anticipated increase in older Māori deaths. Of concern, New Zealand’s neo-colonial trajectory (loss of lands, cultural disenfranchisement, urban migration, ethnic diversity, global diaspora and changing whānau (family, including extended family) compositions) has restricted some indigenous whānau from retaining their end of life care customs. This article reports on a qualitative pilot study on Māori whānau end of life care customs undertaken to explore how those care customs contribute towards strengthening whānau resilience and bereavement. Five whānau, including thirteen individuals from diverse iwi (tribes), took part in one of six face to face interviews. Kaupapa Māori research methods informed the analysis. The findings report a high level of customary caregiving knowledge among older whānau carers as well as a cohesive whānau collective support system for this group. Tribal care customs were handed down via 1) enculturation with tribal principles, processes and practices 2) observing kaumātua processes and practices and 3) being chosen and prepared for a specific care role by kaumātua. Younger participants had strong cultural care values but less customary care knowledge. The pilot concluded the need for a larger systematic qualitative study of Māori tikanga (customs) and kawa (guidelines) as well as the development of participant digital stories to support a free online educational resource to increase understanding among whānau, indigenous communities and the health and palliative care sectors.

scholarly journals Does national policy in England help deliver better and more consistent care for those at the end of life?

2020 ◽  
Vol 25 (4) ◽  
pp. 238-245
Author(s):  
Rhiannon Barker ◽  
Patricia Wilson ◽  
Claire Butler
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Good Practice ◽  
National Policy ◽  
Medical Model ◽  
Macro Level ◽  
Life Care ◽  
Public Responsibility ◽  
High Level ◽  
The Impact

Objectives To explore the extent to which national policy in end of life care in England influences and guides local practice, to ensure that care for patients over the age 75 years is of a consistently good quality. Method This paper reports on phase one of a larger study and focuses its discussion on the high-level (macro) determinants emerging from the analysis. Fifteen in-depth interviews were conducted with professionals involved in the development of English policy in end of life care. Results Factors influencing the quality of end of life care were stratified into three system levels: meso, macro and micro. English national policy was reported to be an important macro-level determinant of effective outcomes, and examples were provided to demonstrate how policy was influencing practice. Yet, the complexity of the area and the range of interacting contributory factors mean the value of policy alone is hard to assess. At the macro-level, concern was voiced around: whether policy was effective in tackling rising inequity; lack of mandatory leverage to exert change relating to end of life outcomes; the impact of ongoing infrastructural change on statutory services; workforce pressures; over-reliance on acute services and continued abdication of responsibility for end of life care to medical professionals supported by the continued dominance of the medical model of care. Conclusions The links between the existence of policy at the macro-level of the system and the effective enactment of good practice remain unclear, although strategies are suggested to help achieve greater national consistency in end of life care outcomes. Policymakers must pay attention to the following: controlling the rise in localism and its contribution to regional inequalities; the impact of continuous infrastructural change together with increasing workforce pressures; encouraging broader professional and public responsibility for recognition and care of those at the end of life.

scholarly journals Better drug use in advanced disease: an international Delphi study

2018 ◽  
pp. bmjspcare-2018-001623 ◽  
Author(s):  
Bregje A. A. Huisman ◽  
Eric C. T. Geijteman ◽  
Marianne K. Dees ◽  
Lia van Zuylen ◽  
Agnes van der Heide ◽  
...  
Keyword(s):  
End Of Life ◽  
Delphi Study ◽  
End Of Life Care ◽  
Response Rate ◽  
Medication Management ◽  
Life Care ◽  
Limited Life Expectancy ◽  
Limited Life ◽  
All Solutions ◽  
High Level

Patients with a limited life expectancy use many medications, some of which may be questionable.Objectives To identify possible solutions for difficulties concerning medication management and formulate recommendations to improve medication management at the end of life.Methods A two-round Delphi study with experts in the field of medication management and end-of-life care (based on ranking in the citation index in Web of Science and relevant publications). We developed a questionnaire with 58 possible solutions for problems regarding medication management at the end of life that were identified in previously performed studies.Results A total of 42 experts from 13 countries participated. Response rate in the first round was 93%, mean agreement between experts for all solutions was 87 % (range 62%–100%); additional suggestions were given by 51%. The response rate in the second round was 74%. Awareness, education and timely communication about medication management came forward as top priorities for guidelines. In addition, solutions considered crucial by many of the experts were development of a list of inappropriate medications at the end of life and incorporation of recommendations for end-of-life medication management in disease-specific guidelines.Conclusions In this international Delphi study, experts reached a high level of consensus on recommendations to improve medication management in end-of-life care. These findings may contribute to the development of clinical practice guidelines for medication management in end-of-life care.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

Die Entwicklung eines Instruments zur «Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger» (EHPA)

Pflege ◽  
2011 ◽  
Vol 24 (3) ◽  
pp. 171-182
Author(s):  
Mandy Lohe ◽  
Manja Zimmermann ◽  
Christiane Luderer ◽  
Katharina Sadowski
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Subjektive Bewertung ◽  
Ethische Probleme

Als Einrichtungen des Gesundheitswesens sind stationäre Hospize in Deutschland zur Qualitätssicherung und internen Qualitätsentwicklung verpflichtet. Die Bedeutung der Patientenzufriedenheit als einer der indirekten Indikatoren zur Beurteilung der Pflege- und Betreuungsqualität ist mittlerweile unumstritten. Eine subjektive Bewertung des Hospizes durch den Gast selbst birgt sowohl praktische als auch ethische Probleme. Eine Befragung der Angehörigen empfiehlt sich. Der vorliegende Artikel beschreibt die Entwicklung eines Instruments zur Evaluation stationärer Hospize aus der Sicht hinterbliebener Angehöriger. Mit dessen Hilfe soll die Frage, wie Angehörige die Begleitung und Pflege beurteilen, die ihnen sowie ihrem verstorbenen Familienmitglied durch das Hospiz zuteil wurde, beantwortet werden. Die Konstruktion der Fragen erfolgte auf Basis bestehender Konzepte zum Assessment der end-of-life care und einer Analyse aller identifizierten Instrumente zur Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger. Die Fragebogenentwicklung umfasste neben der umfassenden Literaturrecherche die Bildung eines Itempools, die Itemauswahl, die kritische Diskussion der Fragen im Expertenkreis sowie einen standardisierten und kognitiven Pretest. Entstanden ist ein fünfdimensionaler Fragebogen, der physische, psychologische, soziale, spirituelle und versorgungsorganisatorische Aspekte der end-of-life care integriert. Das Instrument umfasst 53 Items in Form überwiegend geschlossener Fragen.

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