Implementation of Knowledge-Based Palliative Care (KUPA)

October 6, 2020 updated by: Lund University

Implementation of Knowledge-Based Palliative Care for Frail Older Persons in Nursing Homes

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.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Detailed Description

The project was planned to be conducted using a cross-over design in two counties in south of Sweden based on a feasibility/pilot study that was conducted during fall 2014 co-created palliative care educational intervention through seminars for professionals in nursing homes. Due to a more significant amount of drop-outs compared with expected (and for not receiving the total amount of applied foundation), the plan needed to be revised. The knowledge-based palliative care intervention was conducted as a non-blinded control trial, implemented over a six-month period in 30 nursing homes in two different counties in the south of Sweden (County A and County B). The data collection was made in two sequential periods in each county. First, the intervention was implemented in ten nursing homes in County A (Kronoberg County from April 2015), while ten nursing homes in County B served as a control group. Then, County B implemented the intervention (Skåne county from April 2016), and ten new nursing homes in County A, which had not received the intervention, were chosen as a control group. After the two sequential time periods were data from one intervention and one control group analysed. The selection through voluntary participation resulted in a mixture of both larger and smaller nursing homes in the two counties, as well as both from urban and rural areas.

Every seminar group met once a month and included different professions (unit manager, district nurse, assistant nurse, and other staff i.e. occupational therapist and physiotherapist). There were 5 meetings in each nursing home during a period of 6 months.

Study Type

Interventional

Enrollment (Actual)

1151

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Sweden
    • Kronoberg
      • Alvesta, Kronoberg, Sweden, 34230
        • Bryggaren
      • Alvesta, Kronoberg, Sweden, 34235
        • Högåsen
      • Grimslöv, Kronoberg, Sweden, 34032
        • Asken
      • Ingelstad, Kronoberg, Sweden, 360 44
        • Kvarngården
      • Konga, Kronoberg, Sweden, 362 40
        • Konga Allhus
      • Lagan, Kronoberg, Sweden, 34014
        • Åbrinken
      • Ljungby, Kronoberg, Sweden, 34135
        • Ljungberga
      • Ljungby, Kronoberg, Sweden, 34138
        • Ljungsätra
      • Ljungby, Kronoberg, Sweden, 34183
        • Brunnsgården
      • Lönashult, Kronoberg, Sweden, 34253
        • Torsgården
      • Moheda, Kronoberg, Sweden, 34260
        • Furuliden
      • Ryd, Kronoberg, Sweden, 360 10
        • Solängen
      • Tingsryd, Kronoberg, Sweden, 362 30
        • Örnen
      • Urshult, Kronoberg, Sweden, 360 13
        • Äppelgården
      • Vislanda, Kronoberg, Sweden, 34250
        • Björkliden
      • Väckelsång, Kronoberg, Sweden, 362 51
        • Solhaga
      • Växjö, Kronoberg, Sweden, 352 41
        • Birkagården
      • Växjö, Kronoberg, Sweden, 352 44
        • Hovslund
      • Växjö, Kronoberg, Sweden, 352 64
        • Evelid
      • Älmeboda, Kronoberg, Sweden, 360 23
        • Älmegården
    • Skåne
      • Höör, Skåne, Sweden, 24395
        • Skogsgläntan
      • Kågeröd, Skåne, Sweden, 28677
        • Åsgården
      • Lund, Skåne, Sweden, 224 60
        • Mårtenslund
      • Lund, Skåne, Sweden, 22460
        • Brunnslyckan
      • Lund, Skåne, Sweden, 22466
        • Norrdala
      • Osby, Skåne, Sweden, 283 42
        • Rönnebacken
      • Svalöv, Skåne, Sweden, 26834
        • Solgården
      • Svedala, Skåne, Sweden, 23338
        • Holmagården
      • Södra Sandby, Skåne, Sweden, 24731
        • Fästan
      • Teckomatorp, Skåne, Sweden, 26872
        • Ängslyckan

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Description

Inclusion Criteria:

  • 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

Exclusion Criteria:

  • Not being cognitive able to participate in interviews or answering the questionnaires

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Supportive Care
  • Allocation: Non-Randomized
  • Interventional Model: Sequential Assignment
  • Masking: None (Open Label)

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
Experimental: Kronoberg Educational Intervention
The educational intervention is provided to ten nursing homes.
Behavioral: Educational Intervention
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.
No Intervention: Skåne Control
The control group consists of an equal number of nursing homes. This group receives no intervention.
Experimental: Skåne Educational Intervention
The educational intervention is provided to ten nursing homes.
Behavioral: Educational Intervention
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.
No Intervention: Kronoberg Control
The control group consists of an equal number of nursing homes. This group receives no intervention.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
World Health Organization Quality of Life-BREF (WHOQOL-BREF)
Time Frame: 9 months

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)
Time Frame: 9 months

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)
Time Frame: 9 months

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)
Time Frame: 9 months

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
Time Frame: 9 months

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
Time Frame: 9 months

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 Outcome Measures

Outcome Measure
Measure Description
Time Frame
Person-centred Care Assessment Tool (P-CAT) (Staff Version)
Time Frame: 6 months

Person-centred Care Assessment Tool (P-CAT)(staff version) measure person-centred care for staff working in nursing homes. Five-point Likert-scale. Higher values mean 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
6 months
Person-Centred Climate Questionnaire (PCQ-S)
Time Frame: 6 months

Person-Centred Climate Questionnaire (PCQ-S) measure person-centred care for staff working in nursing homes. Six-point Likert-scale. Higher values mean better outcomes. Min 14. Max 84.

The range for the sub scale Safety; Min 5 Max 30 The range for the sub scale Everydayness; Min 5 Max 30 The range for the sub scale Community; Min 4 Max 24
6 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Lund University

Collaborators

The Swedish Research Council
Linnaeus University

Investigators

  • Principal Investigator: Gerd Ahlström, PhD, Department of Health Sciences, Lund University

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

April 9, 2015

Primary Completion (Actual)

June 20, 2017

Study Completion (Actual)

October 15, 2017

Study Registration Dates

First Submitted

February 26, 2016

First Submitted That Met QC Criteria

March 9, 2016

First Posted (Estimate)

March 15, 2016

Study Record Updates

Last Update Posted (Actual)

October 28, 2020

Last Update Submitted That Met QC Criteria

October 6, 2020

Last Verified

October 1, 2020

More Information

Terms related to this study

Keywords

Other Study ID Numbers

  • 2014-2759
  • 2014-0071 (Other Grant/Funding Number: The Vardal Foundation)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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