Implementation of Knowledge-Based Palliative Care for Frail Older Persons in Nursing Homes
Phase: NA
Conditions: Ageing
Sponsor: Lund University

 
 
  
 
 
The official title of the study:   
 
Implementation of Knowledge-Based Palliative Care for Frail Older Persons in Nursing 
Homes 
 
NCT number: NCT02708498   
Date of the document: April 8, 2015, updated October 6, 2020  
 
 
 
 

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The original study protocol is approved by the Regional Ethics Review Board in Lund, 
according to Swedish ethical review act (SFS 2003:460). The number of the decision is 
2015/4. The Regional Ethics Review Board was a state authority under the Swedish 
government 2004-2018, reorganised January 1, 2019 into the Ethics Review Authority under 
the Ministry of Education and replaced the Regional ethics review boards: 
https://etikprovningsmyndigheten.se/for-forskare/vad-sager-lagen/ 
 
 
 
Implementation of Knowledge-Based Palliative Care for Frail Older 
Persons in Nursing Homes 
 
PURPOSE AND AIMS 
Earlier studies have shown that older people do not have the same access to palliative care as 
younger people. One reason for this could be that it is difficult to identify the breakpoint for 
palliative care. Older people often have several progressive diseases at the same time with 
complex needs, making it difficult to recognize when the last days before death begins. 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 experiences of the 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.  
 
SURVEY OF THE FIELD 
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 older people. The concept of good ageing 
(active and healthy) has permeated the welfare of older persons despite the fact that an advanced 
age comes with the increased risks of poor health and disabilities. Older people generally suffer 
from an increased frailty due to decreased physiological reserves (Bilotta et al. 2010). Yet the 
research indicates that when it comes to the final stage of life, the end includes unnecessary 
suffering and decreased quality of life (Davies & Higgingson 2004). Common morbidity among 
the older people is high blood pressure, diabetes, stroke or other cardiovascular diseases, 
dementia and arthritis. In a research overview (Marengoni et al. 2011), it clearly shows that 
multiple morbidity can be found among 55-98 % of the population over the age of 80. Older 
people who suffer from morbidity with disabilities describes a reduced social network, 
increased levels of depression and lower life satisfaction than those with an intact health 
(Enkvist et al.2013).  
 
Palliative care has traditionally been predominately provided successfully to persons dying 
from incurable cancer while older people dying of multiple morbidities or “old age” has 
received far less of this type of care. This in spite of the fact that sixty percent of all people who 
died in Sweden in 2010 were at least 80 years old and that the 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 and this knowledge is missing outside specialist 
care units for palliative care. Today, demographic changes are increasing the number of people 
who are 65 years or older, thus also increasing the need to develop palliative care for older 
persons (Hall et al. 2011). 
 

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Nursing homes strive to provide good care for older persons in their final stages of life. 
However, the principles of palliative care which has been developed within specialized 
palliative care and hospices are too often neglected (Davies & Higgingson 2004). There is scant 
research on how the principles palliative care can be implemented in nursing homes with the 
intention of providing the best possible palliative care and at the same time involve the older 
persons and their next of kin in the care process (Beck 2013, Orrung Wallin 2013). Involving 
the older persons in the care process is something which must be done in advance as it is often 
not feasible to do this when they are in the last days of life (Davies & Higgingson 2004). Health 
care professionals need to provide palliative care based on equal rights to this care based on 
needs (SFS 1982:763) and must also consider the fact that the frail older person is often single 
or has next of kin of the same age who may have health-related problems of their own 
(Socialstyrelsen 2012, 2013).  
 
The National Board of Health and Welfare has formulate the goal that everyone should have 
access to knowledge-based palliative care when the need arises, regardless of diagnosis, care 
form, age or where in the country a person lives (Socialstyrelsen 2013). Two  documents have 
been produced in order to provide support for developing, implementing and following up 
knowledge-based palliative care for persons in their final stages of life: A national care program 
by the Regional Co-operative Cancer Centers (Regionala cancercentrum i samverkan 2012) and 
a national knowledge support document by the National Board of Health and Welfare 
(Socialstyrelsen 2013). However, it is well established that it takes an unpredictable amount of 
time before research results, recommendations and guidelines find their way to health care 
professionals and become routine practice.  
 
This project contributes new and unique knowledge about implementation of knowledge-based 
palliative care based on core values developed within hospice and palliative cancer care. The 
project takes the national care program and the national knowledge support document as its 
starting point when investigating the implementation of a knowledge-based palliative care in 
nursing homes. The project uses an educational intervention targeting nursing home staff to 
facilitate the implementation. The outcomes are then analysed with focus on the quality of life 
as well as the participation in the care process of the older person and their next of kin. If 
effective, this educational intervention, which is directed at nursing home staff, can be 
disseminated to other regions of the country and can be implemented as part of a knowledge-
based approach to provide palliative care within the care of frail older people in the end of life.  
 
Palliative care  
The participation of older people in the care process is nowadays a right given by law. It has 
been noted that when the old person has shown a weak interest in communication, that person 
has not perceived that there are alternatives to consider. It has happened at times when the old 
person has been questioned about choices in surgery, medicines, and diagnostic procedures and 
in routine testing of preventive care. In order for the very oldest to become active in decision 
making processes, physicians and health care professions need to provide enough time for 
consideration, goals and preferences with different alternatives (Bynum et al. 2013). 
 
A knowledge-based palliative care is based on available scientific evidence, best practice and 
the preferences from the patient, next of kin and health care professionals. The palliative care 
should meet the needs of the patient and be seen as a process. The meaning of ”a good death” 
is a restored self-image and integrity, to maintain self-determination and social relationships, 
having the opportunity to experience meaning and see the context as well as a good symptom 

4 
 
relief. It is important that the care is planned and conducted in cooperation with the older person 
and the next of kin in a systematic way which includes continuous improvements in accordance 
with an knowledge-based palliative care (Prop 2009/10:116, Socialstyrelsen 2012, Regionala 
cancercentrum i samverkan 2012).  
 
It has been shown that the availability of palliative care is unequal across the country 
(Socialstyrelsen, 2006). A study based on data from the Swedish Register of Palliative Care 
(SRPC) shows that people that died from other diagnosis than cancer did not have the same 
access to palliative care as persons with cancer diagnosis (Brannstrom, Hagglund, Furst, & 
Boman, 2012). The National Board of Health (Socialstyrelsen, 2013) has, because of the 
unequal availability of palliative care in Sweden, been commissioned to draw up a national 
knowledgebase that focuses on proper palliative care. The knowledgebase proposes eight 
quality indicators for good palliative care. Because older people and people with chronic 
diseases has proved to be particularly disadvantaged in terms of palliative care (Socialstyrelsen, 
2004) and that up to 40 % of all deaths occur in nursing homes (The Swedish Register of 
Palliative Care, 2013) it is of great importance to examine the quality of palliative care offered 
there.  
 
A good cooperation between the next of kin and the health care professionals is necessary to 
provide a good palliative care. It is made easier when health care professionals, the patient and 
the next of kin have a shared view of the process (Socialstyrelsen 2013). The role and 
participation of next of kin in the care process and their degree of stress, is directly dependant 
on the quality and degree of care the older person is being provided by the society (Moen & 
Chermack 2005). A noticeable increase of the stress on the next of kin can be seen during 
periods of rapid decrease of the health status in the frail older person (Summer Meranius 2010). 
It is therefore important to support next of kin of older persons with long-term morbidity, 
especially when the next of kin themselves are older. WHO recommends that unlike in cancer 
care where palliative care is provided at the last week, palliative care for older persons with 
multiple morbidity should be provided offered alongside other treatments over a longer period 
of time (Davies & Higgingson 2004). If the participation of next of kin is non-existent or 
decreasing due to the fact that they themselves do not have the strength to do so, the quality of 
life of the older person is affected negatively. Studies on the degree of participation of next of 
kin in the care process are central in order to be able to explain the burden which they carry 
(Andershed 2006, Aoun et al. 2012, and Kouikia & Madianos 2005).   
 
Research has shown that leadership that promotes comfort and trust within the health care 
organization influences the way the organization fulfils its goals in a meaningful way 
(Cummings et al. 2010, Dutfield et al. 2011). However, knowledge about the importance of 
leadership within palliative care is very limited. Research has predominantly focused on the 
contents of the delivered care and the specialist competences needed to provide care as well as 
educational issues and team cooperation. During the last few years, organizational leadership, 
culture and resources of the organisation have gained an increasing importance with regards to 
providing knowledge-based palliative care (Klarare et al. 2013). 
 
 
 

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PROJECT DESCRIPTION 
 
THEORETICAL FRAMEWORK 
The project is based on a theoretical implementation framework that provides a structure for 
analysis of mechanisms (i.e. “the black box”) of the implementation of knowledge-based 
palliative care. Studies which apply implementation research theories are increasingly 
requested and this application fosters improved knowledge accumulation of the interplay 
between which determinants that affect health care professionals’ use of knowledge-based 
practices (Eccles et al., 2005; Michie et al., 2011; Nilsen et al., 2012). 
 
Table 1: Implementation determinants in this project 
Determinant 
The five key-factors and application in this project 
Characteristics of 
the 
implementation 
object 
(Described in the 
method sections 
in future 
publications) 
 
 
Features of the intervention itself (i.e. the “implementation object”). 
The “object” that is implemented is typically a specific knowledge-based 
practice, program, service, etc. that has been found to be effective in 
research. 
__________________________________________________________  
In this project, the implementation object of palliative care is a binder 
constructed specific for this project based on national knowledge-based 
documents produced by the National Board of Health and Welfare and 
the Regional Co-operative Cancer Centers. The educational strategy for 
implementation is based on these documents.  
 
Characteristics of 
the target 
population 
Features of the receivers of the implementation intervention, i.e. target 
population. The target population consists of the individuals on which 
an implementation endeavour is ultimately intended to have an impact.  
 
Studies 1-4 investigate the characteristics of the target populations who 
are the frail older persons in nursing homes, and their next of kin. 
Characteristics of 
the 
implementers 
Features of the professionals who use and deliver the intervention (i.e. 
“the implementers”). The implementers are those responsible for 
delivering the implementation object.  
 
Studies 5-7 and 8 investigate the characteristics of the implementers, 
who are all the nursing home staff as well as the managers working at the 
included nursing homes. 
Effectiveness of 
implementation 
strategies used  
Strategies and activities chosen to implement the intervention object. 
Implementation strategies (also referred to as implementation 
interventions) are conscious efforts to influence the implementation 
process in order to achieve desired changes in clinical practice.  
 
Studies 1-3, 5-8 investigate the effectiveness of an educational 
intervention and coaching during six months in Kronoberg County in 
2015 and Skåne County in 2016.  
 
Characteristics of 
the context in 
The context is the social environment in which implementation takes 
place. It is customary to distinguish between the inner and outer context 

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which the 
implementation 
occurs 
of the implementation; the former represents features of the workplace 
or organization and the latter is related to the wider environment within 
which health care organizations reside, i.e. the wider society. The 
context represents influences on the implementation process and impact 
that is, at least partially, beyond the control of the implementers and 
target population. 
Study 1, 5-7, and 8 investigates the characteristics of the context in 
nursing homes, in which implementation of knowledge-based palliative 
care takes place.  
 
This project applies a theoretical framework that specifies a number of determinants (barriers 
and facilitators) for implementation outcomes. The framework is a synthesis of several similar 
frameworks in the implementation literature, including those described by Damschroder et al. 
(2009), Greenhalgh et al. (2004), Grol et al. (2007), Nilsen et al. (2010) and Nutley et al. (2007). 
The framework is well-tried as it has been used in many implementation studies on health and 
caring. The five key factors (which all affect each other) and how the different parts of this 
project relate to the implementation research terminology are shown in table 1. 
 
Research has shown that a successful implementation depends on interplay between the 
effectiveness of the implementation strategies chosen to support the implementation and 
characteristics of the implementation object, the implementers, the target population and the 
context of the implementation (Table 1). 
 
Updated design of the implementation research 
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-randomized 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 August 
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 within the two counties 
(cluster samples), as well as both from urban and rural areas.  
 
Implementation object 
According to the National Board of Health and Welfare, palliative care should be based on four 
cornerstones: symptoms relief, multi-professional cooperation, communication and relation as 
well as support to the next of kin (Socialstyrelsen 2012). The aim of palliative care is to reduce 
suffering and promote the quality of life for patients with progressive, incurable illnesses or 
injuries. The care should address physical, psychosocial and spiritual needs as well as provide 
support to the next of kin. The definition by the National Board of Health and Welfare closely 

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adheres to the definition of palliative care by the World Health Organization (WHO), 
(Socialstyrelsen 2013).  
 
Implementation intervention/strategies  
The educational strategies will be based on co-created palliative care educational intervention, 
which consists of a series of seminars and coaching. The education has been planned together 
with staff, informal caregivers and patients. The educational material for use in the seminaries 
has been developed as well as empirical tested in the feasibility study during the fall 2014. The 
strategies was tested in this feasibility study at four nursing home in Kronoberg County during 
the autumn 2014, in order to understand how the implementation object can be translated into 
practice at nursing homes. Seven educational meetings were reduced to five as a result of the 
study. 
 
Every seminar group meetings once a month includes different professions (unit manager, 
district nurse, assistant nurse, and other staff i.e. occupational therapist and physiotherapist). 
There will be 5 meetings with 8-10 participants in each group from each nursing home. The 
total intervention period is 6 months in each nursing home. 
 
The educational strategies are based on the two national knowledge documents concerning 
palliative care in the end of life and the Swedish Register of Palliative Care (SRPC). The 
educational binder was developed based on the content in the two national knowledge 
documents and is used in this intervention. Each participant is provided a binder at the 
beginning of the intervention. 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. In addition, there will be a list of 
references available for further self-studying by the participants. 
 
The seminar groups will be led by two experienced clinical nurses and researchers from the 
field of palliative care and geriatric care. 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. These areas 
will also be identified based on the Swedish Register of Palliative Care (SRPC). The 
knowledgebase for discussions in the seminar groups is seven selected quality indicators out of 
the total of 27 questions concerning essential aspects of palliative care. The seven quality 
indicators are: Prevalence of pressure ulcers, documented individual prescription when needed 
of opioid and anti-anxiety drugs, oral health assessment, talks about the substance and direction, 
pain analysis and regular estimation of pain intensity and regular use of instrument for symptom 
assessments.   
 
The evaluation of the implementation 
Data collection is made before and after the implementation, same time for intervention- and 
control groups. The implementation of the educational intervention will be evaluated by using 
qualitative and quantitative methods (see Table 2).  
 
 
 

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Table 2. Sub studies and data collection i Kronoberg County and Skåne County 2015 and 2016 
for the implementation of knowledge based palliative care. 
Subjects 
Method 
Selection in the 
implementation nursing 
homes 
Selection in the 
control nursing 
homes* 
Sub study 1:  
Older persons 
 
Structured interview (based on 
WHOQOL-BREF (26 items), 
WHOQOL-OLD (24 items), P-
CAT (13 items) and The Person-
Centered Climate Questionnaire 
(17 items) 
20 older persons were 
interviewed before and 
after three months after 
finished implementation   
The same as for the 
implementation nursing 
homes 
Sub study 2:  
Next of kin 
 
Qualitative interviews 
participation and structured 
interview WHOQOL-BREF (26 
items), WHOQOL-OLD (24 
items) 
20 next of kin before and 
three months after 
finished implementation  
20 next of kin before 
and three months after 
finished implementation 
Sub study 3:  
Next of kin 
 
The participation of next of kin in 
palliative care at nursing homes 
(36 items) WHOQOL-BREF (26 
items), WHOQOL-OLD (24 
items) 
100 next of kin before and 
after nine months  
100 next of kin before 
and after nine months  
Sub-study 4: 
Psychometric study; test-retest, 
explorative factor analysis 
See above 
See above 
Sub study 5:  
Staff 
 
Focus group interviews 
(preparedness for implementation) 
20 staff divided into 3 
groups before and after 
the implementation is 
finished 
 
Sub study 6: 
Staff 
Questionnaires at two occasions: 
Experiences of palliative care (46 
items), P-CAT (13 items) and the 
Person-Centered Climate 
Questionnaire (14 items) 
100 staff before and after 
the implementation is 
finished 
100 staff with 6 months 
in between 
Sub study 7: 
Managers 
Two individual interviews with 
managers (organic preparedness 
for implementation) 
20 managers at different 
levels-, during the 
intervention and after six 
months 
 
Sub study 8: 
Implementation 
context   
An ethnographic study: 
Observations and qualitative 
interviews 
Observations on 28 
occasions at 7 nursing 
homes with a strategic 
selection of qualitative 
interviews during the 
implementation 
 
 
 
THE OVERALL AND SPECIFIC AIMS 
The overall aim of this research project is to evaluate the outcomes and effectiveness of the 
implementation method of a knowledge-based model for palliative care in nursing homes. The 
overall aim can be broken down into four specific research questions and nine different studies:  
1. What is the outcome of the implementation intervention in terms of quality of life, 
participation and quality of care in older persons and next of kin at nursing homes 
before and after? (Study I, II-IV)  
2. Investigates the staff’s implementation process of palliative care and the role of the 
leadership and (Study V-IX). 
3. Investigate which factors (barriers and facilitators) that affect the implementation 
process of this model (Study V, VII-IX).  

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The evaluation consist of 8 studies and involves four implementation outcomes in accordance 
with the framework proposed by Proctor et al. (2011): Acceptability - The perception among 
implementers (nursing home staff and managers) that a given knowledge-based practice 
(palliative care in nursing homes) is agreeable, towards benefit or satisfactory; 
Appropriateness - The perceived fit, relevance or compatibility of an knowledge-based 
practice (palliative care), for a given practice setting,  provider, or consumer (older persons 
and their next of kin); Feasibility - The extent to which an knowledge-based practice 
(palliative care) can be successfully used or carried out within a given agency or setting 
(nursing homes); and Fidelity - The degree to which an knowledge-based practice (palliative 
care in nursing homes) was implemented as it was prescribed in the original protocol (the 
knowledge documents concerning palliative care). 
 
Participants in studies  
The persons asked for participation in this study, i.e. older persons, next of kin, staff and leaders 
are recruited from the included nursing homes in both Skåne and Kronoberg counties. The 
persons are selected consecutively until the stipulated figures are reached (Table 2). 
 
Methods and instruments 
The following methods and instruments will be used in this project: 
 
Questionnaires  
Quality of life: The WHOQOL-BREF questionnaire (WHO, Manual 1996) and the WHOQOL-
OLD questionnaire (WHO, Manual 2006) assessed quality of life. The older persons and next 
of kin will answer to the questions in a structured interview. The WHOQOL-BREF is often 
used together with the WHOQOL-OLD module and both are psychometric tested by the 
WHOQOL Group (Power et al., 1999). The WHOQOL-OLD module have been validated for 
old people in several countries, for example Sweden (Power et al. 2005) and can be used in a 
wide variety of studies including cross cultural investigations, population epidemiology, health 
monitoring, service development, and clinical intervention trials in which issues about quality 
of life are crucial (WHO, Manual 2006). The project has acquired permissions from WHO to 
use these questionnaires and in order to make it easier to answer the questionnaires, the answer 
alternatives will be enlarged on a separate paper and used during the interview.  
 
The Person-centered Care Assessment Tool (P-CAT) measures the extent to which an aged 
care setting is person-centered. The tool is primarily intended for use by staff but expanded 
with a version for the older person’s self-reporting. The Swedish version of the P-CAT has 
been found to be valid, reliable, and applicable for further use (Edvardsson et al. 2010, 
Sjögren et al. 2012). Person-centered care is increasingly regarded as being synonymous with 
best quality care. In this project, both the staff version and the version for the older will be 
used. 
 
The Person-Centered Climate Questionnaire: The Person-centered Climate Questionnaire 
exists both in a patient and a staff version. The instruments have been shown as being a valid 
and reliable contribution for assessing to what extent the climate of care environments is 
person-centered. The factors are safety, everydayness and hospitality. The instrument enables 
descriptions and comparisons of environments, exploration of correlates between person-
centeredness and patient outcomes and/or measure results of various interventions (Bergland 
et al. 2015, Edvardsson et al. 2013).  

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The newly developed self-reported questionnaire was named Next of Kin Participation in Care 
(NoK-PiC): Before the start of this project, there was a complete lack of instruments designed 
to measure the participation of next of kin in palliative care in nursing homes. To deal with this, 
a questionnaire for next of kin’s participation was developed before the beginning of the project. 
Literature reviews of previous research about the next of kin´s participation was performed 
including all types of care in general as well as focus on palliative care and the care at nursing 
homes. The systematic literature review resulted in a questionnaire with 36 items about next of 
kin´s participation in palliative care. The new questionnaire was psychometrical tested on 400 
next of kin (Westergren et al. 2020). 
 
Experiences of palliative care: The staff will also answer a questionnaire with 47 items, newly 
constructed to capture changes in health professionals' attitudes, knowledge and assessment of 
the quality of palliative care; before (one month’s), and after finishing the implementation 
intervention. Validation of the questionnaire is ongoing (Östlund et al. 2014).  
 
Focus group interviews and individual interviews  
Focus groups interviews: focus group interviews with the staff at nursing homes were chosen 
as the method to emphasise the interaction between respondents with a common frame of 
reference (McLafferty 2004). This method gives an opportunity to elicit data on how a group 
of staff describes their experiences of the implementation process of palliative care in elderly 
care. An interview guide was applied, consisting of open questions about the preparedness of 
the organisation to implement palliative care. The focus groups include 3-12 persons as well as 
a moderator who leads the discussion and an observer. Immediately after each interview, the 
observer made field notes, including a summary of the areas discussed, the order of speakers 
and the group dynamics, to ensure the quality of each group session (Kreuger 1994). The 
content analysis of the data was performed.  
 
Individual interviews: To obtain comprehensive data, the interviewer create a dialogue that 
was designed to capture the participant’s experience of the phenomena of interest (Kvale & 
Brinkmann, 2009). The interviews with the leaders as well as with the next of kin adopted a 
semi-structured interview guide and began with an open-ended question. The interview 
questions to the next of kin were about the quality of life and participation. The interview 
with the leaders focused on the preparedness of their organisation to implement palliative 
care. The number and formulation of follow-up questions depended on the richness of the 
participant’s answer to the open-ended question.  
 
Participants observations 
Ethnographic methods such as participant observations or go along and interviews applies in 
order to get a deeper understanding of how palliative care is framed and described and how it 
unfolds over time in everyday practice at home will be used. Participant observations make it 
possible to explore the trivial details of everyday life which are essential for understanding how 
people create meaning. Following the staff at nursing home forms the potential to make 
available the experience of the individual. This kind of observation is called go along 
(Kusenbach 2003), and this concept emphasises the perceptions of place and space and is 
applied to explore the individual’s lived experience. Likewise, the informal conversations that 
occur between the staff and the researcher during the observation are of equal importance and 
significance (Pink 2009). Participant observations also involve studying the materiality to be 
handled as medications and assistive devices, but also everyday objects in the nursing home. 

11 
 
The social relations between staff and the older person are expressed, negotiated and 
transformed and how meaning is created. The information from the participant observations 
will be collected as field notes and analysed from the ethnographic approach.  
 
SIGNIFICANCE 
This project contributes scientific knowledge about the outcomes, barriers and facilitators, for 
the implementation of a knowledge-based palliative care in nursing home. Research on frail 
older people in nursing homes in terms of participation and quality of life has been relatively 
neglected in the past. But the growing need for palliative care in nursing homes means that the 
need for research can no longer be neglected. The intervention involves leaders which in recent 
research has shown to be necessary in order to maintain sustainable changes when staff 
implements palliative care in nursing homes (Beck 2013). 
 
There is currently no research study that examines the quality of the palliative care at nursing 
homes, influencing factors or whether there are differences in quality of palliative care in urban 
and rural districts. A comprehensive national register study of the quality of palliative care in 
nursing homes could make it possible to analyze and interpret the results from an 
implementation perspective and put the results in a broader picture. It is of great importance to 
examine the quality of the palliative care offered because older people and people with chronic 
diseases has proved to be particularly disadvantaged in terms of palliative care (Socialstyrelsen,  
2004) and up to 40 % of all deaths occur in nursing homes (Swedish Register of Palliative Care, 
2013). 
 
The importance of the context has increasingly been emphasized in implementation research, 
with organisational culture and leadership being identified as two key aspects of this context 
(Nilsen et al. 2013). This project explores the importance of nursing home leadership and 
culture for the implementation of palliative care. Organisational culture is defined as common 
values (goals, ideals, and priorities), norms (behaviours which are expected, accepted and 
supported), basic assumptions and views of reality which have been developed within a group 
or organization (Schein 2004). Culture is closely connected with leadership; leaders impact the 
culture since they have the power to influence their co-workers with their values, norms and 
views of reality. At the same time, an established culture influences who become leaders 
(Schein 2004). Leadership can be defined in many different ways, but most definitions reflect 
the assumption that leadership involves a process whereby intentional influence is exerted by 
one person over other people to guide, structure and facilitate activities and relationships in a 
group or organization (Gill 2011, Yukl 2006).  
 
ETHICAL CONSIDERATIONS 
The research project is guided by the research ethical principles for medical research (the 
Declaration of Helsinki). The researchers will work carefully to generate valuable knowledge 
while minimizing harmful consequences. To maintain the principle of non- maleficence, the 
participants are guaranteed confidentiality, this is taken into account when reporting the 
findings through abstracted findings presented at the group level. The PI and the project 
administrator at Lund University are the only two persons to possess the names and addresses 
of the participants, and the personal information will be kept secure. Confidentiality will be 
increased by using codes in the correspondence between a researcher and a participant and 
when the transcriptions and analyses of the qualitative data are performed.  
 

12 
 
In accordance with respecting the participants’ autonomy, all the participants will be informed 
that they have the right to withdraw from the study at any time without suffering any 
consequences for their future care. The participants will give their written informed consent 
before the study begins. In the interviews, the author will be aware of power issues, in that an 
interview is not a conversation between two equal individuals. The researcher has control over 
the situation. This power issue will be treated with respect, and during the course of the 
interview, the participant will be asked if the author’s interpretation is correct. In accordance 
with the participants’ autonomy, the healthcare professionals will be asked individually for their 
permission to use the observations note and recordings of the interviews.  
Respectful encounters will be applied and all efforts will be done with the utmost sensitivity to 
the participants’ signs of tiredness, which are a common part of frailty and high symptom 
burden. In the interviews, we will attempt to obtain beneficial knowledge while minimizing 
harmful consequences (Kvale & Brinkmann, 2009). The interviewer will be aware of the 
consequences when the situation may involve private concerns. If an older person or a family 
member in the study is found to undergo emotional difficulties or stress, the researcher will 
offer to help with contacting healthcare professionals. The interview time will also be taken 
into careful consideration. The researcher will give the participants opportunity to reflect on 
what they have said in the interviews, and time will also be available for the participants to ask 
questions.  
Not all participants in the project will receive the implementation of palliative care as that will 
only be implemented for those in the intervention group. The control group will receive 
ordinary care and social service. In accordance with the principle of justice, it is important to 
send the findings from this project to the two nursing homes involved only as control groups. 
However, after the study period, these nursing homes will be given the teaching about palliative 
care in according with their own preferences. The co-created palliative care educational 
intervention is based on equal partnership and mutual learning in the process of knowledge 
creation.  
 
 
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