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Quality in palliative care from the patient perspective : Instrument development, perceptions of care received and the importance of care

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. / 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. / 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.

Identiferoai:union.ndltd.org:UPSALLA1/oai:DiVA.org:kau-46970
Date January 2016
CreatorsSandsdalen, Tuva
PublisherKarlstads universitet, Institutionen för hälsovetenskaper, Högskolan i Hedmark, Karlstad
Source SetsDiVA Archive at Upsalla University
LanguageEnglish
Detected LanguageEnglish
TypeDoctoral thesis, comprehensive summary, info:eu-repo/semantics/doctoralThesis, text
Formatapplication/pdf
Rightsinfo:eu-repo/semantics/openAccess
RelationKarlstad University Studies, 1403-8099 ; 48

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