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Patients’ preferences in palliative care: A systematic mixed studies review
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences. Högskolan i Hedmark.
Högskolan i Hedmark.
Högskolan i Hedmark.
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences.
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2015 (English)In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 29, no 5, 399-417 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:

It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient's combined preferences for all elements that constitute palliative care.

AIM:

The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research.

DATA SOURCES:

Studies were retrieved by searching databases - the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts - from 1946 to 2014, and by hand searching references in the studies included.

DESIGN:

A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis.

RESULTS:

The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme 'Living a meaningful life' illustrated what patients strived for. The opportunity to focus on living required the presence of 'Responsive healthcare personnel', a 'Responsive care environment' and 'Responsiveness in the organization of palliative care'.

CONCLUSION:

The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients' preferences.

Place, publisher, year, edition, pages
2015. Vol. 29, no 5, 399-417 p.
Keyword [en]
Patient preference; palliative care; quality of healthcare; review; systematic mixed studies review
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-38169DOI: 10.1177/0269216314557882ISI: 000353209000002PubMedID: 25680380OAI: oai:DiVA.org:kau-38169DiVA: diva2:860812
Available from: 2015-10-14 Created: 2015-10-14 Last updated: 2016-11-02Bibliographically approved
In thesis
1. Quality in palliative care from the patient perspective: Instrument development, perceptions of care received and the importance of care
Open this publication in new window or tab >>Quality in palliative care from the patient perspective: Instrument development, perceptions of care received and the importance of care
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim was to investigate the quality of palliative care from the patient perspective, to adapt and psychometrically evaluate the Quality from Patients’ Perspective instrument specific to palliative care (QPP-PC) and investigate the relationship between the combination of person- and organization-related conditions and patients’ perceptions of care quality.

Methods: In the systematic literature review (I), 23 studies from 6 databases and reference lists in 2014 were synthesized by integrative thematic analysis. The quantitative studies (II–IV) had cross-sectional designs including 191 patients (73% RR) from hospice inpatient care, hospice day care, palliative units in nursing homes and home care in 2013–2014. A modified version of QPP was used. Additionally, person- and organization-related conditions were assessed. Psychometric evaluation, descriptive and inferential statistics were used.

Main findings: Patients’ preferences for palliative care included living a meaningful life and responsive healthcare personnel, care environment and organization of care (I). The QPP-PC was developed, comprising 12 factors (49 items), 3 single items and 4 dimensions: medical–technical competence, physical–technical conditions, identity–oriented approach, and socio-cultural atmosphere (II). QPP-PC measured patients’ perceived reality (PR) and subjective importance (SI) of care quality. PR differed across settings, but SI did not (III). All settings exhibited areas of strength and for improvement (II, III). Person-related conditions seemed to be related to SI, and person- and organization-related conditions to PR, explaining 18–30 and 22-29% respectively of the variance (IV).

Conclusions: The patient perspective of care quality (SI and PR) should be integrated into daily care and improvement initiatives in palliative care. The QPP-PC can measure patients’ perceptions of care quality. Registered nurses and other healthcare personnel need awareness of person- and organization-related conditions to provide high-quality person-centred care.

Abstract [en]

Knowledge about patients’ perceptions of palliative care is limited and valid instruments are needed. The aim of this thesis was to investigate quality of palliative care from the patient perspective, adapt and evaluate an instrument to measure patients’ perceptions of quality in palliative care (QPP-PC), and investigate the relationship between the combination of person- and organization-related conditions and patients’ perceptions of care quality. A systematic literature review and quantitative methods were used.

Patients’ preferences in palliative care included help living a meaningful life and responsive personnel, care environment and organization of care. The QPP-PC was developed and identified patients’ perceptions of areas of strength and for improvement in hospice inpatient and day care, palliative units in nursing homes and home care settings. Perceptions of care quality seemed to be related to person- and organization-related conditions, and differed across settings, although subjective importance did not.

The patient perspective of care quality should be integrated into daily care and quality work, and QPP-PC can be used in such work. Registered nurses and other healthcare personnel need awareness of person- and organization-related conditions to provide high-quality person-centred palliative care.

Abstract [no]

Den overordnede hensikten var å undersøke kvalitet i palliativ behandling og omsorg fra pasientens perspektiv, å utvikle og psykometrisk evaluere spørreskjemaet Kvalitet ut fra Pasientens Perspektiv (KUPP) for palliativ omsorg (KUPP-PO), samt å undersøke sammenhengen mellom person- og organisasjonsrelaterte forhold og pasientenes erfaringer av kvalitet.

Metode. I den systematiske oversiktsartikkelen (I) ble 23 studier fra seks databaser og referanselister syntetisert i 2014 med integrativ tematisk analyse. De kvantitative studiene (II-IV) hadde et tverrsnittsdesign som inkluderte 191 pasienter (svarprosent: 73) fra hospice-døgnavdeling, hospice-dagavdeling, lindrende enheter i sykehjem og hjemmetjeneste i 2013 til 2014. En modifisert versjon av KUPP ble brukt. I tillegg ble person- og organisasjonsorienterte forhold kartlagt. Deskriptiv og  inferensiell statistikk, samt psykometrisk evaluering ble anvendt.

Hovedfunn. Pasientene ønsket at palliativ behandling og omsorg skulle omfatte hjelp til å leve et meningsfullt liv og at helsepersonell, omsorgsmiljø og organisering av omsorgen var lydhør for og handlet eller var tilrettelagt i samsvar med deres preferanser (I). KUPP-PO ble utviklet og omfattet 12 faktorer (49 spørsmål), 3 enkeltstående spørsmål og fire dimensjoner; medisinsk-teknisk kompetanse, fysisk-tekniske forhold, identitetsorientert tilnærmingsmåte og sosiokulturell atmosfære (II). KUPP-PO målte pasientenes erfaringer og subjektiv betydning av kvalitet. Pasientens erfaringer av kvaliteten med palliativ behandling og omsorg varierte utfra kontekst, men subjektiv betydning varierte ikke. Alle omsorgskontekstene viste styrker og forbedringsområder (II, III). Personrelaterte forhold så ut til å være forbundet med subjektiv betydning mens person- og organisasjonsorienterte forhold så ut til å være forbundet med erfaring med behandling og omsorg, og forklarte respektivt 18–30/22-29% av variansen (IV).

Konklusjon: Kvalitet fra pasientens perspektiv (subjektiv betydning og erfaring) bør integreres i daglig behandling og omsorg og i forbedringstiltak i palliativ omsorg. KUPP-PO kan måle pasientenes erfaringer i kvalitetsutviklingsarbeid. Sykepleiere og annet helsepersonell trenger å være bevisst person- og organisasjonsrelaterte forhold for å utføre personsentrert behandling og omsorg av høy kvalitet.

Place, publisher, year, edition, pages
Karlstad: Karlstad University Press, 2016. 88 p.
Series
Karlstad University Studies, ISSN 1403-8099 ; 48
Keyword
organization-related conditions, palliative care, patient perspective, person-related conditions, psychometric evaluation, quality of care, QPP-PC, systematic review, organisasjonsrelaterte forhold, palliative behandling og omsorg, pasient perspektiv, personrelaterte forhold, psykometrisk evaluering, kvalitet, QPP-PC, systematisk oversikt
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-46970 (URN)978-91-7063-731-5 (ISBN)
Public defence
2016-12-16, 1A305 Lagerlöfsalen, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2016-11-25 Created: 2016-10-31 Last updated: 2016-11-25Bibliographically approved

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