Implementation of Knowledge-Based Palliative Care
KUPA
2 other identifiers
interventional
1,151
1 country
30
Brief Summary
The research on ageing during the last couple of decades has increasingly focused on questions regarding the quality of life and life satisfaction of the old people. Yet the research indicates that when it comes to the final stage of life, the end includes unnecessary suffering and the quality of life drops. Palliative care has traditionally been provided successfully to younger persons dying from incurable illnesses while older people dying of multiple morbidities or "old age" has received far less of this type of care. However, sixty percent of all people who died in Sweden in 2010 were at least 80 years old and it is well known that dying among older people often is a prolonged period of suffering. One reason might be that it is more difficult to identify when the final stages of life begins for older persons. The purpose of this project is to implement and evaluate how a knowledge-based model for palliative care in nursing homes affects the quality of life and the participation in the care process for older persons in nursing homes and their next of kin. A second aim is to explore the staff's implementation process of palliative care and the role of the leadership. The final aim is to investigate which factors (barriers and facilitators) that affect the implementation process of this model.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for not_applicable
Started Apr 2015
Typical duration for not_applicable
30 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
April 9, 2015
CompletedFirst Submitted
Initial submission to the registry
February 26, 2016
CompletedFirst Posted
Study publicly available on registry
March 15, 2016
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 20, 2017
CompletedStudy Completion
Last participant's last visit for all outcomes
October 15, 2017
CompletedResults Posted
Study results publicly available
September 2, 2020
CompletedOctober 28, 2020
October 1, 2020
2.2 years
February 26, 2016
March 20, 2019
October 6, 2020
Conditions
Keywords
Outcome Measures
Primary Outcomes (6)
World Health Organization Quality of Life-BREF (WHOQOL-BREF)
World Health Organization Quality of Life-BREF (WHOQOL-BREF) measure quality of life for older persons' at the end of life living in nursing homes. Five-point Likert-scale. Higher values mean better outcomes. Total score Min 26. Max 130. The range for the sub scale Overall Quality of Life; Min 1 Max 5 The range for the sub scale General health; Min 1 Max 5 The range for the sub scale Physical Health; Min 7 Max 35 The range for the sub scale Psychological; Min 6 Max 30 The range for the sub scale Social relationships; Min 3 Max 15 The range for the sub scale Environment; Min 8 Max 40
9 months
World Health Organization Quality of Life-OLD (WHOQOL-OLD)
World Health Organization Quality of Life-OLD (WHOQOL-OLD) measure quality of life for older persons living in nursing homes. Five point Likert-scale. Higher value means better outcome. Min 24. Max. 120. The range for the all the sub scales are; Min 1 Max 20
9 months
Person-centred Care Assessment Tool (P-CAT)(Patient Version)
Person-centred Care Assessment Tool (P-CAT) (patient version) measure person-centred care for older persons living in nursing homes. Five point Likert-scale. Higher score means better outcomes. Min 13. Max. 65. The range for the sub scale Extent of personalizing care; Min 8 Max 40 The range for the sub scale Amount of organizational and environmental support; Min 5 Max 25
9 months
Person-Centred Climate Questionnaire (PCQ Patient Version)
Person-Centred Climate Questionnaire (PCQ patient version) measure person-centred care for older persons living in nursing homes. Six point Likert-scale. Higher score means better outcome. Min 17. Max. 102. The range for the sub scale Safety; Min 10 Max 60 The range for the sub scale Everydayness; Min 4 Max 24 The range for the sub scale Hospitality; Min 3 Max 18
9 months
Next-of-Kin Participation in Care (NoK-PiC); Psychometric Evaluation
Next-of-Kin Participation in Care (NoK-PiC) measure participation for next of kin to older persons in nursing homes. The study includes both intervention and control groups. The two scales are 1) Communication and Trust (CaT); and 2) Collaboration in Care (CiC). The scales contains nine items each and items are scored from 0 to 4 (agree not at all (=0); agree to a low degree (=1); agree partly (=2); agree to a high degree (=3); and agree totally (=4). The possible score range from 0 to 36 in each of the two scales, and from 0-72 in the total scale. Higher score means better outcomes. This results are based upon a recently published psychometric evaluation by Westergren et al (2020).
9 months
World Health Organization Quality of Life-BREF (WHOQOL-BREF) for Next of Kin
World Health Organization Quality of Life-BREF (WHOQOL-BREF) measure quality of life for next of kin to older persons in nursing homes. Five-point Likert-scale. Higher values mean better outcomes. Min 26. Max 130. he range for the sub scale Overall Quality of Life; Min 1 Max 5 The range for the sub scale General health; Min 1 Max 5 The range for the sub scale Physical Health; Min 7 Max 35 The range for the sub scale Psychological; Min 6 Max 30 The range for the sub scale Social relationships; Min 3 Max 15 The range for the sub scale Environment; Min 8 Max 40
9 months
Secondary Outcomes (2)
Person-centred Care Assessment Tool (P-CAT) (Staff Version)
6 months
Person-Centred Climate Questionnaire (PCQ-S)
6 months
Study Arms (4)
Kronoberg Educational Intervention
EXPERIMENTALThe educational intervention is provided to ten nursing homes.
Skåne Control
NO INTERVENTIONThe control group consists of an equal number of nursing homes. This group receives no intervention.
Skåne Educational Intervention
EXPERIMENTALThe educational intervention is provided to ten nursing homes.
Kronoberg Control
NO INTERVENTIONThe control group consists of an equal number of nursing homes. This group receives no intervention.
Interventions
The seminar groups will be led by two experienced clinical nurses and researchers from the field of palliative care and geriatric care. The educational material consist of six themes; values in palliative care, symptom relief, dignity and a dignified death, collaborative co-creating care, support to next of kin and dialogue with older persons and next of kin about death and dying. The content of the different themes will have a common core for each nursing home but will be adjusted based on the expressed needs of each nursing home. New themes can be created related to the needs of the unique nursing home. The participants in the seminar groups will reflect together over the content of the developed binder of educational material and will relate it to their own work in order to identify areas suitable for changes and/or development.
Eligibility Criteria
You may qualify if:
- Older persons living in the participating nursing homes
- Next of kin to older persons living in the participating nursing homes
- Staff working at the participating nursing homes
- Managers working at the participating nursing homes
- The participating nursing homes must be located in either Kronoberg County or Skåne County in Sweden
You may not qualify if:
- Not being cognitive able to participate in interviews or answering the questionnaires
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Lund Universitylead
- Linnaeus Universitycollaborator
- The Swedish Research Councilcollaborator
Study Sites (30)
Bryggaren
Alvesta, Kronoberg County, 34230, Sweden
Högåsen
Alvesta, Kronoberg County, 34235, Sweden
Älmegården
Älmeboda, Kronoberg County, 360 23, Sweden
Asken
Grimslöv, Kronoberg County, 34032, Sweden
Kvarngården
Ingelstad, Kronoberg County, 360 44, Sweden
Konga Allhus
Konga, Kronoberg County, 362 40, Sweden
Åbrinken
Lagan, Kronoberg County, 34014, Sweden
Ljungberga
Ljungby, Kronoberg County, 34135, Sweden
Ljungsätra
Ljungby, Kronoberg County, 34138, Sweden
Brunnsgården
Ljungby, Kronoberg County, 34183, Sweden
Torsgården
Lönashult, Kronoberg County, 34253, Sweden
Furuliden
Moheda, Kronoberg County, 34260, Sweden
Solängen
Ryd, Kronoberg County, 360 10, Sweden
Örnen
Tingsryd, Kronoberg County, 362 30, Sweden
Äppelgården
Urshult, Kronoberg County, 360 13, Sweden
Birkagården
Vaxjo, Kronoberg County, 352 41, Sweden
Hovslund
Vaxjo, Kronoberg County, 352 44, Sweden
Evelid
Vaxjo, Kronoberg County, 352 64, Sweden
Solhaga
Väckelsång, Kronoberg County, 362 51, Sweden
Björkliden
Vislanda, Kronoberg County, 34250, Sweden
Skogsgläntan
Höör, Skåne County, 24395, Sweden
Åsgården
Kågeröd, Skåne County, 28677, Sweden
Mårtenslund
Lund, Skåne County, 224 60, Sweden
Brunnslyckan
Lund, Skåne County, 22460, Sweden
Norrdala
Lund, Skåne County, 22466, Sweden
Rönnebacken
Osby, Skåne County, 283 42, Sweden
Fästan
Södra Sandby, Skåne County, 24731, Sweden
Solgården
Svalöv, Skåne County, 26834, Sweden
Holmagården
Svedala, Skåne County, 23338, Sweden
Ängslyckan
Teckomatorp, Skåne County, 26872, Sweden
Related Publications (12)
Persson HA, Ahlstrom G, Ekwall A. Professionals readiness for change to knowledge-based palliative care at nursing homes: a qualitative follow-up study after an educational intervention. BMC Palliat Care. 2022 Jul 20;21(1):132. doi: 10.1186/s12904-022-01018-y.
PMID: 35854375DERIVEDAhlstrom G, Rosen H, Persson EI. Quality of Life among Next of Kin of Frail Older People in Nursing Homes: An Interview Study after an Educational Intervention concerning Palliative Care. Int J Environ Res Public Health. 2022 Feb 24;19(5):2648. doi: 10.3390/ijerph19052648.
PMID: 35270339DERIVEDBokberg C, Sandberg J. Until death do us part Adult children's perspective of their parents' transition from living at home to moving into a nursing home and the time after death. BMC Geriatr. 2021 Nov 27;21(1):666. doi: 10.1186/s12877-021-02633-9.
PMID: 34837994DERIVEDSandgren A, Arnoldsson L, Lagerholm A, Bokberg C. Quality of life among frail older persons (65+ years) in nursing homes: A cross-sectional study. Nurs Open. 2021 May;8(3):1232-1242. doi: 10.1002/nop2.739. Epub 2020 Dec 13.
PMID: 34482652DERIVEDWestergren A, Ahlstrom G, Persson M, Behm L. Next of kin participation in the care of older persons in nursing homes: A pre-post non-randomised educational evaluation, using within-group and individual person-level comparisons. PLoS One. 2021 Jan 25;16(1):e0244600. doi: 10.1371/journal.pone.0244600. eCollection 2021.
PMID: 33493153DERIVEDTjernberg J, Bokberg C. Older persons' thoughts about death and dying and their experiences of care in end-of-life: a qualitative study. BMC Nurs. 2020 Dec 16;19(1):123. doi: 10.1186/s12912-020-00514-x.
PMID: 33327960DERIVEDRosen H, Ahlstrom G, Lexen A. Psychometric properties of the WHOQOL-BREF among next of kin to older persons in nursing homes. Health Qual Life Outcomes. 2020 Apr 19;18(1):103. doi: 10.1186/s12955-020-01345-9.
PMID: 32306965DERIVEDWestergren A, Behm L, Lindhardt T, Persson M, Ahlstrom G. Measuring next of kin's experience of participation in the care of older people in nursing homes. PLoS One. 2020 Jan 31;15(1):e0228379. doi: 10.1371/journal.pone.0228379. eCollection 2020.
PMID: 32004352DERIVEDRosen H, Behm L, Wallerstedt B, Ahlstrom G. Being the next of kin of an older person living in a nursing home: an interview study about quality of life. BMC Geriatr. 2019 Nov 21;19(1):324. doi: 10.1186/s12877-019-1343-4.
PMID: 31752709DERIVEDBokberg C, Behm L, Ahlstrom G. Next of kin's quality of life before and after implementation of a knowledge-based palliative care intervention in nursing homes. Qual Life Res. 2019 Dec;28(12):3293-3301. doi: 10.1007/s11136-019-02268-9. Epub 2019 Aug 14.
PMID: 31414348DERIVEDBokberg C, Behm L, Wallerstedt B, Ahlstrom G. Evaluation of person-centeredness in nursing homes after a palliative care intervention: pre- and post-test experimental design. BMC Palliat Care. 2019 May 31;18(1):44. doi: 10.1186/s12904-019-0431-8.
PMID: 31151438DERIVEDAhlstrom G, Nilsen P, Benzein E, Behm L, Wallerstedt B, Persson M, Sandgren A. Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design: a study protocol. BMC Palliat Care. 2018 Mar 22;17(1):52. doi: 10.1186/s12904-018-0308-2.
PMID: 29566688DERIVED
Related Links
MeSH Terms
Interventions
Intervention Hierarchy (Ancestors)
Results Point of Contact
- Title
- Professor Gerd Ahlström
- Organization
- Department of Health Sciences, Lund University
Study Officials
- PRINCIPAL INVESTIGATOR
Gerd Ahlström, PhD
Department of Health Sciences, Lund University
Publication Agreements
- PI is Sponsor Employee
- No
- Restrictive Agreement
- No
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- NON RANDOMIZED
- Masking
- NONE
- Purpose
- SUPPORTIVE CARE
- Intervention Model
- SEQUENTIAL
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
February 26, 2016
First Posted
March 15, 2016
Study Start
April 9, 2015
Primary Completion
June 20, 2017
Study Completion
October 15, 2017
Last Updated
October 28, 2020
Results First Posted
September 2, 2020
Record last verified: 2020-10
Data Sharing
- IPD Sharing
- Will not share