Introduction:

 

Since the
1960’s, palliative care has had great shifts in knowledge and services in
numerous countries worldwide (Abu-saad 2008), for example , more than 60
initiatives to develop the palliative care services in 12 countries across
Europe, all of them have focused on conducting the change in palliative care in
the long-term settings and the development of supported care at home, the
change is intended on the individuals, the group, organisational, regional and
national levels.(Froggatt & Reitinger 2013). as palliative care has become
more specialized and is emphasizing now on how to deal with the patient as a “whole”,
which, therefore, requires a wide range of services to be provided such as:
medical and nursing care, symptoms control, social care, occupational care,
spiritual support and counselling, bereavement services, at home services,
physiotherapy and respite, (Beresford, Adshead & Croft 2006). In this
essay, I am going to provide proposed research plan to study the palliative
care services in the Vale of Glamorgan (South Wales) from the patients and the
nurses’ points of view or perspectives, then, this essay will provide detailed
description in regards every proposed step that should be made to carry out
this research study.

 

Background:

 

During the
past 20 years, palliative care has gone beyond being conceptualized in terms of
end-of-life solely, but – rather- has started to face new challenges of
providing specialized and effective care and support to people living with
chronic conditions for several years such as cancer and Human Immunodeficiency
Virus ( HIV), as they have many unique needs yet to be met, these needs are
related to the effects of the treatment, as well as the psychological and
spiritual impacts of facing death or living with persistent symptoms such as
disability and fatigue, (Faull, de Caestecker, Nicholson & Black 2012).
These challenges have found the need for palliative care to improve all the
time to be more holistic, by addressing the broad range of patients’ physical,
social, material, cultural and psychological needs, to give them the quality of
life they deserve and their families, (Beresford et.al.2006).

Wales – in
particular, as the study area- has been trying to provide a higher specialized
palliative care services across the country, one example on their initiations
for improvement is the establishment of the Wales Palliative Care Planning
Group in 2008, the plan was to ensure access to palliative care by both
patients and clinicians 24/7 across Wales, developing information system for
easy access, encourage public engagement and to set standards for quality of
care measurements, ( Health in Wales 2011). Another example is the Cancer
Delivery Plan for Wales 2016-2020, this plan has mentioned some of the key
actions regarding palliative care for cancer patients such as: support training
programs in palliative care, to have the needed funding, to support the patient’s
self-management, to consider people’s preferences and the patients and families’
engagement in the decision-making process. (Wales Cancer Network 2016).

Indeed,
patients (as service users) and nurses (as providers) both are very important
parties in the whole quality improvement process, hence, their opinions
regarding the services could be the first source of information to the
evaluation, as the service should be targeting the patients’ needs within
palliative care settings, thus, I thought of the importance for research to
explore their perceptions.

In brief
description of how can we use these perceptions in future improvements,
firstly, patients’ perceptions would insight us about the different types of
needs by telling research about what are they expecting from the service to do
for them, thus, by taking the patients’ preferences and needs into account we
will be able to design or modify the services to be more effective and
efficient, (Sandsdalen, Hov, Hoye, Rystedt & Wilde-Larrson 2015). Secondly,
nurses’ feedback can give us an idea about the clinical and educational needs
for staff and what types of training and skills should be provided to help them
deliver a high quality of care, (Ferrell & Coyle 2010).

 

Problem statement:

 

The main
objective of this study is to explore the opinions of nurses and patients
regarding the services of palliative care in Vale of Glamorgan, the reason for
choosing this area that different cultures mean different people and
perceptions, also, I could not find any similar studies for Vale of Glamoran or
south wales.

Add to
that, the researcher lives within this population, then it will be more efficient
in time and effort for the study to be conducted in this area. Also, as a
researcher who is interested in the subject of palliative care, I think the
findings from this study will help in future research on palliative care as it
is broaden and involving more chronic conditions and professionals with new
needs and new roles must be identified. What would help to justify the
importance of this study as a source of primary information on the services, is
what mentioned by researchers in the Mental Health Weekly Digest (2017), as
they estimated that 160,000 more people will need palliative care services in
England and Wales by 2040, and that needs a great shift in training and
resources for more specialized care, (Disease Attributes 2017).

 

Literature review:

 

In this
section, I will have a look at what has been written in literature about
palliative care and nurses and patients’ perceptions on the services and
quality of care, also, I hope at the end of this literature review I will be
able to form my specific research question to be in-line with the previous work
in this research area.

Generally,
most of the literature has revealed the importance of patients and nurses’
perceptions as a main source of knowledge to form and improve palliative care
services, also, have confirmed that palliative care should be focused on
ensuring a good quality of life until death, effective communication within
palliative care teams and maintaining a comfortable and supportive environment
for patients, (Sandsdalen et.al. 2015).

 

Patients’ preferences

 

The
literature has stressed on the importance of patients in palliative care
settings and how crucial is their feedback on the services, also, the way they
perceive the whole process can be used to reform these services to meet their
expectations. Johnston and Smith (2006) have conducted a qualitative study on a
sample of patients in Scotland and their findings have given examples that
describing patients’ expectations of palliative care such as patients’ wish was
to keep independence and stay in control of their choices, they expect an
effective interpersonal relationship with staff and for staff to have the
needed skills to communicate and perform in a supportive way, specially,
emotional support, (Johnston & Smith 2006). Such findings could be used to
form the services to meet these needs and to assess what practices to improve
my further training or education.

From a
different angle, given that terminal illness has huge impact on various aspects
of the patients’ life, patients may develop some forms of depression, anxiety,
and low self-image, that would reveal negative perspective regarding the whole
situation, including staff and services, as in some study settings patients
found to perceive palliative care in terms of death, dependency, hopelessness
and all they expect is a comfort end-of-life, also, they insisted that the
concept of ” palliative care ” still carrying a type of stigma and it needs to
be changed, (Zimmermann, Swami, Krzyzanowska, Leighl, Rydall et.al. 2016). Such
results show how important to explore the patients’ perceptions to be able to
form or adjust the service for better outcomes.

 

Nurses’ perceptions

 

Majority of
patients in palliative care – as the previous section discussed- tend to
perceive their nurses as a main source of support and how they should have the
skills to build an effective interpersonal relationship with the patients more
than clinical relationships. From here, we claim the importance of exploring
the nurses’ perspectives towards their role and duties within palliative care
settings. Many literature has addressed palliative care from the nurses’ point
of view, Cawley, Waterman, Roberts and Caress (2010) have explored these
perceptions and found that nurses have emphasized on the important role that
information exchange with both, the management and the patients, in terms of
empowerment for them to be creative and supportive and for the patients to help
them make their own choices, also, nurses have made some requests to find the
effective measures to be able to evaluate their way of service delivery on both
physical and emotional levels, (Cawley et.al.2010).

However,
this study had some limitations such as the culture – north west England – may
had some effect on the results and the sample was a self-selected sample which
put the results at high risk of bias. (Cawley et.al.2010).

Certainly,
cultural background can affect the nurses’ perception and practice, for
example, Sayedfatemi, Borimnejad, Hamooleh and Tahmasebi (2014) have explored
the nurses’ perceptions on working with patients with cancer in Iran, and yet,
results showed different believes in the way they use to help the patients cope
and manage the cancer pain, one way was to advice the patients not to take
their pain medicine (Opioids) for different reasons, for their side effects
which they thought would impact the patents’ life more, or because they
believed the palliative care should be use mechanisms of emotional support
rather than focusing on the physical pain. (Sayedfatemi et.al.2014). Obviously,
these perceptions have been affected by the religious culture of the Iranian
society. Apparently, if that sort of practice has happened in the UK it would
be a huge ethical issue, because we believe that managing pain with medication is
one way to reach the comfortable life for patients in palliative care. In that
sense, nurses in south wales could have different ways to describe what they
think of palliative care should they provide and what are the considerations to
keep in mind while delivering that service.

In USA,
Becker, Wright and Schmit (2017) when they studied nurses’ perceptions as they
are working within acute care settings, they end up with eight categories of
nurses’ actions that – in their opinion – would reinforce the quality of life
for patients with terminal illness, these are (1) effective multidisciplinary communication,
(2) full physical care, (3) showing caring and compassion, (4) ensuring dignity
of death for patients, (5) providing information to patients and families, (6)
stay emotionally supportive, (7) advocacy for dying well, and (8) adopting a
comfortable environment, (Becker et.al.2017). these results could be helpful to
guide the interviews in this research.

 

After all, we
have seen how different literature has agreed on the importance of exploring
patients and nurses’ perceptions if we want to achieve an effective and
efficient palliative care service. Furthermore, literature has indicated to how
culture, interpersonal skills, clinical training and patient’s engagement may
lead to different perceptions, expectations, needs and types of services
delivery, these results have helped me to choose my research question and the
population (which is of a rural nature in most of it). Next section will
describe how this research study will be carried out.

 

Methods:

 

As the
literature review has been done, I have my ideas narrowed to one research
question to be addressed in this research proposal.

 

Research question:

 

The
proposed question for this study is:

 

“How
do patients and nurses perceive palliative care services in Vale of Glamorgan
(south Wales) ”

 

Approach and design:

 

As the
research question is tending to explore opinions, I have decided to use a
qualitative approach to tackle this question, the rationale for using this
approach that it will give more space for participants to express themselves
and gives the researcher the chance to gain as many as possible of opinions and
feedback, however, some of these opinions could be missed by previous research.

I have chosen
to use a non-experimental research design, as this is an exploratory study
having the form of cross-sectional because I am exploring the perceptions in a specified,
short period of time. Also, due to the nature of the study and the type of
information targeted (opinions and feelings), I have decided to use a narrative
hermeneutic approach, as I am trying to look at how both patients and nurses
perceive the services which could be connected to preferences and expectations
more than experiencing a certain event or a phenomenon.

 

 

 

 

 

Sampling:

 

As
indicated in the research question, this study is involving three parties: the
palliative care centers in the Vale of Glamorgan, the nurses and the patients
within these centers, therefore, three samples are needed, first sample to
decide which centers will participate, to do that I will contact the management
of each center (as almost all are private centers) by phone or in person –if
needed- and give information about the study and the procedures, then which
centers are willing to participate will be included in the sample. For the
second sample, the nurses, I have decided to be of a size of 8 nurses, through
the management, those whom willing to participate will be interviewed, in case
the number of willing nurses exceeds 8, then a randomized (probability) sample
will be drawn to pick 8 nurses. The same sampling procedure will be done for
the third sample – the patients-, also, a sample of 8 is planned to be included
from the patients. After deciding on the final sample of the three groups, the
data collection starts.

 

Data collection:

 

To be able
to collect the desired amount and type of data, I have decided for interviews
to be used because I think interviews will be the reliable way to explore
perceptions as it gives the researcher and the participant the chance to get as
deep as needed into the research problem. So, in this study, 16 interviews – 8
nurses and 8 patients – are to be conducted, the proposed setting is assumed to
be the residential place – the palliative care center – unless the participant
has preferred to interview somewhere else for convincing reason. Regarding the
nature of these interviews, they will be 30 minutes, face to face, semi
structured interviews and it will be conducted using 5 open- ending questions
to each group of participants (as they listed in appendix 1), the use of this
type of interviews will give the chance for generating sub-questions – to get a
clearer idea- and give more space to participants to express their selves
broadly. At the beginning of the interview, information sheet (appendix 2) will
be given to explain the purpose of the study, emphasizing confidentiality and
no names will be mentioned, and their right to stop or cancel the interview
whenever they feel tired or uncomfortable during the interview, also, this
information sheet will be accompanied with a consent form to be signed by the
participants. As interviews will last 30 minutes, that will make difficult and
in-efficient for the researcher to take written notes during the interview,
therefore, interviews will be recorded in audio for later analyzing, that will
give the researcher the ability to observe the environment and facial
expressions. Finally, I will allow only 10 extra minutes if there was a need
for that.

 

Data analysis:

 

Due to the
narrative nature of the data have been collected from the 16 interviews, I have
decided to use a thematic analysis process. The plan is to start with reviewing
all answers collected from all participants and to code these answers, then I
will work on grouping these coded answers into themes, this procedure will
allow to organize the data I got and get rid of any irrelevant answers or data,
next step in the analysis process will be defining and naming the generated
themes and this means the data is ready to be analyzed and interpreting , the
analysis starts with finding patterns within the answers and try to state
similarities and differences, positives and negatives and unique suggestions,
this process of interpreting the themes will form the findings or the results
to this study.

 

Time table:

 

Regarding
the estimated time needed to conduct this study, I set a proposed time table
over a 12-week period from starting the research proposal to the results presentation
(appendix 3).

 

 

 

 

 Ethical considerations:

 

First, I
will fill and then apply the Ethical Approval Form (appendix 4) which provided
by the college of human and health sciences at Swansea university, second,  as mentioned in a previous point, I will get
approval from the centers management to avoid any issues regarding patients or
nurses in consideration to the involvement of vulnerable participants – the patients-
, then finally, I will provide the consent form to the participants with the
information they need about the research and what is expected from them and
assuring that their names are unmentioned and regarding safe usage of data, in
some cases, I probably will need to get approval from the patient’s family even
if he was able to decide for himself.

 

Trustworthiness:

 

To
establish trustworthiness to this qualitative study, I will be using two types
of triangulation, first, participants’ triangulation: as the study examines
data from different participants (8 people in each group) from different
contexts (different palliative care centers) by using the same method (the same
interview questions). Second, investigator triangulation, as I will ask another
person who the expertise in qualitative research in general and healthcare to
use the same method to analyze the same answers (data) to reach an acceptable
percentage of agreement on the results, high percentage will indicate
trustworthiness to this study, then other researchers can benefit from it while
conducting similar study in different population or context. Moreover, the
recorded interviews will represent the evidence of neutrality regarding the
results and will exclude any effects that assumed for the researcher to have on
the results.

 

Strengths and limitations:

 

The
strength that presents in this study design is the space given to the
researcher and the participants to into the answer as deep as it needed, also,
using the interviews will help the researcher to collect as possible data as
he/she can get from the patients and the nurses regarding the services, and produce
these services differently even within the same group or context.

In
contrast, this study can have many limitations within, starting with depending
on a small sample due to the time and cost saving, this sample might not enough
to represent the population then will be difficult to confirm the results in a
generalizing form. Another issue with this study is the interviews, dealing
with people – specially people with illness- will put the possibility of
conducting the interviews within the proposed time frame at risk of cancelling
due to any emergencies.

Furthermore,
in this study, the perceptions of both the nurses and the patients could be
affected by un-noticed factors as the interviews are to be conducted in the
work place where the management and other staff are present and family members
may be present with the patient which may affect his/her answer, more factors
may play a role in the answers the personal values or political ideology.

Finally,
the researcher will be carful of subjectivity when analyzing the data, to
minimize this type of error, I have used the audio recording to be heard more
than one time from the researcher and from the other investigator. Also, to
make sure that the results are really what the participants believe, it is
worth to give recommendations for other researchers or even the same researcher
to study the effects of these possible variable on the nurses and the patients’
perceptions within the same population in the future.

 

Conclusion:

 

This research
proposal is presenting a plan to carry out a research study to explore the
patients and the nurses’ perceptions on the palliative care services in vale of
glamorgan, I have described as detailed as I could every one of the steps that
need to be taken to conduct this study, starting with a brief background about
palliative care and palliative care in wales, then I have discussed  some of the literature that studied patients
and nurses’ perceptions on this topic, then a research question has been
developed, then the method and the design for the study is described, after
that, I have presented a discussion regarding the processes of data collection,
analysis, and interpretation , at the end, research related issues have been
addressed – ethical issues, trustworthiness, strengths and limitations to the
study and the design – and what supposed to be done in terms of each issue.