Change search
ReferencesLink to record
Permanent link

Direct link
Quality in palliative care from the patient perspective: Instrument development, perceptions of care received and the importance of care
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences. Högskolan i Hedmark.
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 [en]
organization-related conditions, palliative care, patient perspective, person-related conditions, psychometric evaluation, quality of care, QPP-PC, systematic review
Keyword [no]
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: urn:nbn:se:kau:diva-46970ISBN: 978-91-7063-731-5OAI: oai:DiVA.org:kau-46970DiVA: diva2:1044098
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
List of papers
1. Patients’ preferences in palliative care: A systematic mixed studies review
Open this publication in new window or tab >>Patients’ preferences in palliative care: A systematic mixed studies review
Show others...
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.

Keyword
Patient preference; palliative care; quality of healthcare; review; systematic mixed studies review
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-38169 (URN)10.1177/0269216314557882 (DOI)000353209000002 ()25680380 (PubMedID)
Available from: 2015-10-14 Created: 2015-10-14 Last updated: 2016-11-02Bibliographically approved
2. Patients’ perceptions of palliative care: Adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care, and description of patients’ perceptions of care received
Open this publication in new window or tab >>Patients’ perceptions of palliative care: Adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care, and description of patients’ perceptions of care received
Show others...
2015 (English)In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 14, 54Article in journal (Refereed) Published
Abstract [en]

Background: Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. Method: A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73 % response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. Results: The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue >= 1.0, and showed a stable factor solution that explained 68.25 % of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. Conclusion: The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was developed and psychometrically evaluated in a sample of Norwegian patients with various diagnoses receiving palliative care in different care contexts. The evaluation of the QPP-PC shows promising results, although it needs to be further validated and tested in other contexts and countries.

Keyword
Palliative care; Quality of healthcare; Instrument development; Factor analysis; Statistical; Patient perspectives
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-38170 (URN)10.1186/s12904-015-0049-4 (DOI)000364624300001 ()26525048 (PubMedID)
Available from: 2015-10-14 Created: 2015-10-14 Last updated: 2016-11-02Bibliographically approved
3. Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study
Open this publication in new window or tab >>Patients' perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study
Show others...
2016 (English)In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 15, no 1Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Patients' perceptions of care quality within and across settings are important for the further development of palliative care. The aim was to investigate patients' perceptions of palliative care quality within settings, including perceptions of care received and their subjective importance, and contrast palliative care quality across settings.

METHOD: A cross-sectional study including 191 patients in late palliative phase (73 % response rate) admitted to hospice inpatient care, hospice day care, palliative units in nursing homes, and home care was conducted, using the Quality from the Patients' Perspective instrument-palliative care (QPP-PC). QPP-PC comprises four dimensions and 12 factors; "medical-technical competence" (MT) (2 factors), "physical-technical conditions" (PT) (one factor), "identity-orientation approach" (ID) (4 factors), "sociocultural atmosphere" (SC) (5 factors), and three single items (S); medical care, personal hygiene and atmosphere. Data were analysed using paired-samples t-test and analysis of covariance while controlling for differences in patient characteristics.

RESULTS: Patients' perceptions of care received within settings showed high scores for the factors and single items "honesty" (ID) and "atmosphere" (S) in all settings and low scores for "exhaustion" (MT) in three out of four settings. Patients' perceptions of importance scored high for "medical care" (S), "honesty" (ID), "respect and empathy" (ID) and "atmosphere" (S) in all settings. No aspects of care scored low in all settings. Importance scored higher than perceptions of care received, in particular for receiving information. Patients' perceptions of care across settings differed, with highest scores in hospice inpatient care for the dimensions; ID, SC, and "medical care" (S), the SC and "atmosphere" (S) for hospice day care, and "medical care" (S) for palliative units in nursing homes. There were no differences in subjective importance across settings.

CONCLUSION: Strengths of services related to identity-orientation approach and a pleasant and safe atmosphere. Key areas for improvement related to receiving information. Perceptions of subjective importance did not differ across settings, but perceptions of care received scored higher in more care areas for hospice inpatient care, than in other settings. Further studies are needed to support these findings, to investigate why perceptions of care differ across settings and to highlight what can be learned from settings receiving high scores.

National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-46164 (URN)10.1186/s12904-016-0152-1 (DOI)000382220000001 ()27553776 (PubMedID)
Available from: 2016-09-15 Created: 2016-09-15 Last updated: 2016-11-02Bibliographically approved
4. The relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality
Open this publication in new window or tab >>The relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality
Show others...
(English)Manuscript (preprint) (Other (popular science, discussion, etc.))
National Category
Nursing
Identifiers
urn:nbn:se:kau:diva-46974 (URN)
Available from: 2016-10-31 Created: 2016-10-31 Last updated: 2016-11-18Bibliographically approved

Open Access in DiVA

fulltext(1619 kB)26 downloads
File information
File name FULLTEXT02.pdfFile size 1619 kBChecksum SHA-512
91cb547d3a892dd57a459a7fb8f00627b0b6e6465a00d1828cfe38de8a208bb8288fe66a59abe393886224a237894911cd37c195eabf0dcc48d393a3b215e6d5
Type fulltextMimetype application/pdf

Search in DiVA

By author/editor
Sandsdalen, Tuva
By organisation
Department of Health Sciences
Nursing

Search outside of DiVA

GoogleGoogle Scholar
Total: 26 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Total: 27 hits
ReferencesLink to record
Permanent link

Direct link