Clinical trial NCT02708498: Implementation of Knowledge-Based Palliative Care
Official title: Implementation of Knowledge-Based Palliative Care for Frail Older Persons in Nursing Homes
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Ageing
Keywords: Palliative care
Frail elderly
Comorbidity
Staff Development
Nursing Homes
Lead sponsor: Lund University
Sponsor class: OTHER
Collaborators: name: Linnaeus University
name: The Swedish Research Council
First posted: 2016-03-15
Enrollment: 1151
Sex: ALL
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NON_RANDOMIZED
Intervention model: SEQUENTIAL
Intervention model description: The knowledge-based palliative care intervention was conducted as a non-randomized control trial.
Primary purpose: SUPPORTIVE_CARE

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.

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.

Eligibility criteria: 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

Primary outcomes:
measure: World Health Organization Quality of Life-BREF (WHOQOL-BREF)
timeFrame: 9 months
measure: World Health Organization Quality of Life-OLD (WHOQOL-OLD)
timeFrame: 9 months
measure: Person-centred Care Assessment Tool (P-CAT)(Patient Version)
timeFrame: 9 months
measure: Person-Centred Climate Questionnaire (PCQ Patient Version)
timeFrame: 9 months
measure: Next-of-Kin Participation in Care (NoK-PiC); Psychometric Evaluation
timeFrame: 9 months
measure: World Health Organization Quality of Life-BREF (WHOQOL-BREF) for Next of Kin
timeFrame: 9 months
Secondary outcomes:
measure: Person-centred Care Assessment Tool (P-CAT) (Staff Version)
timeFrame: 6 months
measure: Person-Centred Climate Questionnaire (PCQ-S)
timeFrame: 6 months
Other outcomes:
Locations:
city: Alvesta
country: Sweden
facility: Bryggaren
state: Kronoberg
city: Alvesta
country: Sweden
facility: Högåsen
state: Kronoberg
city: Grimslöv
country: Sweden
facility: Asken
state: Kronoberg
city: Ingelstad
country: Sweden
facility: Kvarngården
state: Kronoberg
city: Konga
country: Sweden
facility: Konga Allhus
state: Kronoberg
city: Lagan
country: Sweden
facility: Åbrinken
state: Kronoberg
city: Ljungby
country: Sweden
facility: Ljungberga
state: Kronoberg
city: Ljungby
country: Sweden
facility: Ljungsätra
state: Kronoberg
city: Ljungby
country: Sweden
facility: Brunnsgården
state: Kronoberg
city: Lönashult
country: Sweden
facility: Torsgården
state: Kronoberg
city: Moheda
country: Sweden
facility: Furuliden
state: Kronoberg
city: Ryd
country: Sweden
facility: Solängen
state: Kronoberg
city: Tingsryd
country: Sweden
facility: Örnen
state: Kronoberg
city: Urshult
country: Sweden
facility: Äppelgården
state: Kronoberg
city: Vislanda
country: Sweden
facility: Björkliden
state: Kronoberg
city: Väckelsång
country: Sweden
facility: Solhaga
state: Kronoberg
city: Växjö
country: Sweden
facility: Birkagården
state: Kronoberg
city: Växjö
country: Sweden
facility: Hovslund
state: Kronoberg
city: Växjö
country: Sweden
facility: Evelid
state: Kronoberg
city: Älmeboda
country: Sweden
facility: Älmegården
state: Kronoberg
city: Höör
country: Sweden
facility: Skogsgläntan
state: Skåne
city: Kågeröd
country: Sweden
facility: Åsgården
state: Skåne
city: Lund
country: Sweden
facility: Mårtenslund
state: Skåne
city: Lund
country: Sweden
facility: Brunnslyckan
state: Skåne
city: Lund
country: Sweden
facility: Norrdala
state: Skåne
city: Osby
country: Sweden
facility: Rönnebacken
state: Skåne
city: Svalöv
country: Sweden
facility: Solgården
state: Skåne
city: Svedala
country: Sweden
facility: Holmagården
state: Skåne
city: Södra Sandby
country: Sweden
facility: Fästan
state: Skåne
city: Teckomatorp
country: Sweden
facility: Ängslyckan
state: Skåne
Study officials:
affiliation: Department of Health Sciences, Lund University
name: Gerd Ahlström, PhD
role: PRINCIPAL_INVESTIGATOR
References:
citation: 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.
citation: Ahlstrom 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.
citation: Bokberg 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.
citation: Sandgren 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.
citation: Westergren 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.
citation: Tjernberg 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.
citation: Rosen 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.
citation: Westergren 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.
citation: Rosen 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.
citation: Bokberg 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.
citation: Bokberg 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.
citation: Ahlstrom 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.