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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
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences. Högskolan i Hedmark.
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences.
Högskolan i Hedmark.
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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.

Place, publisher, year, edition, pages
2015. Vol. 14, 54
Keyword [en]
Palliative care; Quality of healthcare; Instrument development; Factor analysis; Statistical; Patient perspectives
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-38170DOI: 10.1186/s12904-015-0049-4ISI: 000364624300001PubMedID: 26525048OAI: oai:DiVA.org:kau-38170DiVA: diva2:860813
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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