How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals

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Abstract

Background:

Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders.

Aim:

To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care.

Design:

We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach.

Setting/participants:

All specialised palliative home-care teams ( n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations ( n = 5), and interviewed patients ( n = 14), relatives ( n = 14) and health professionals working in or collaborating with specialised palliative home-care ( n = 30). We also conducted focus groups ( n = 4) with health professionals including a member check.

Results:

Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination.

Conclusions:

Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care.

Trial registration:

German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de .

Related collections

Most cited references 48

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Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

A Tong, P SAINSBURY, J. Craig (2007)

Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.

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The use of triangulation in qualitative research.

Nancy Carter, Denise Bryant-Lukosius, Alba DiCenso … (2014)

Triangulation refers to the use of multiple methods or data sources in qualitative research to develop a comprehensive understanding of phenomena (Patton, 1999). Triangulation also has been viewed as a qualitative research strategy to test validity through the convergence of information from different sources. Denzin (1978) and Patton (1999) identified four types of triangulation: (a) method triangulation, (b) investigator triangulation, (c) theory triangulation, and (d) data source triangulation. The current article will present the four types of triangulation followed by a discussion of the use of focus groups (FGs) and in-depth individual (IDI) interviews as an example of data source triangulation in qualitative inquiry.

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White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

Jenny van der Steen, Lukas Radbruch, Cees Hertogh … (2014)

Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. To define optimal palliative care in dementia. Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

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Author and article information

Contributors

Hannah Seipp: (View ORCID Profile)

Dania Schütze: (View ORCID Profile)

Jennifer Engler: (View ORCID Profile)

Journal

Title: Palliative Medicine

Abbreviated Title: Palliat Med

Publisher: SAGE Publications

ISSN (Print): 0269-2163

ISSN (Electronic): 1477-030X

Publication date Created: December 2021

Publication date (Electronic): June 25 2021

Publication date (Print): December 2021

Volume: 35

Issue: 10

Pages: 1844-1855

Affiliations

[1 ]Department of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Hessen, Germany

[2 ]Professional Association of Specialised Palliative Homecare in Hesse, Wiesbaden, Germany

[3 ]Institute of General Practice, Goethe-University Frankfurt, Frankfurt am Main, Germany

[4 ]German Federal Rehabilitation Council (BAR e.V.), Frankfurt am Main, Germany

Article

DOI: 10.1177/02692163211026516

PubMed ID: 34169767

SO-VID: c8f19e37-9db8-46ff-9ff2-32cb3faad554

License:

https://creativecommons.org/licenses/by/4.0/

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How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals

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Abstract

Background:

Aim:

Design:

Setting/participants:

Results:

Conclusions:

Trial registration:

Related collections

Special feature: Methodological Innovations in Qualitative Educational Research

Most cited references 48

Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

The use of triangulation in qualitative research.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

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Contributors

Journal

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Article

History

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Cited by 7

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