- This project, which pertains to adults (above 18) who are dying because of fatal heart diseases that are identified as incurable, is grounded in the notions of End-of-Life Care. These services/care and health care units is provided in a special environment (emergency department settings), which makes these unique services. This academic exercise/research project will have a strong influence on the Peaceful End of Life theory. This theory itself is derived from the notion and practice of standard of care for peaceful ends of time. For the study, of the standard care theory, we learn that nurses, of the Gastroenterological unit, in Norway, developed it (Ruland& Moore, 1998). Most of the patients in that unit were terminally ill (cancer patients). This standard care necessitated another practice, which was more efficient, and it addressed the challenges which the medical staff was facing. Therefore, to address these challenges and to improve the care/service of terminally ill patients, Ruland and Moore developed the theory of Peaceful End of Life (Theory)(Ruland& Moore, 1998). The theory developed by Rolland and Moore also emphasized on complexities about Also, they asserted that knowledge, related to mitigating of the pain of terminally ill patients, was essential.
The theory is very comprehensive, as it not only focuses on the patients but also on those who are taking care of these patients and making efforts to subside their pain without blemishing patients’ self-respect or dignity. The theory provides guidelines for those, who is taking care of these terminally ill patients and suggest those methods that could be effective in making this difficult phase less cumbersome and painful for both patients and their significant others/relatives. For instance, ED staff must be sensitive to the situation of a patient and must provide required medical and psychological assistance.
We can adopt this theory in different situations, as the theory focuses on five factors, such as 1) no pain, 2) comfort, 3) dignity/respect, 4) peace and 5) closeness with significant others, which are universal. We must also acknowledge that the theory does not focus on a cure, but rather on the care of the patient, which keeps affairs simple for ED. For this precise reason, this theory is apt to guide and influence this project in that direction, where it meets its sets objectives.
We must also acknowledge that through this theory it is very comprehensive, and we can apply it to various realities about terminally ill patients; it is developed by keeping in consideration western health care system, units, and culture. Therefore, it will be slightly difficult to apply this theory, in its entirety, to Saudi Arabia’s health care systems/settings and units.
- There is a high probability that the project, which is based on the EOL theory, will increase and refine information about the identified factors that will directly affect that quality of EOLC and improve the efficiency of ED staff in Saudi Arabia.
- We have opted for this particular research design, as it permits us to address research questions more appropriately. Also, this research design allows us to use two methods simultaneously. The Mixed Research method assists us to produce results through qualitative and quantitative methods. These produced results can be crosschecked to understand the depth and dimensions of our results. We intend to incorporate these findings into this research project, which provides academic community and government highly relevant information regarding the care/services of the people who are terminally ill.
- Researchers, who intend to retrieve quantitative data, mostly employ surveys that are non-experimental quantitative research design (Getliffe, 2008). One of the advantages is that survey research is very flexible, and we can retrieve information that is desired and relevant with ease. Also, these surveys can be very broad, which facilitates retrieving various kinds of pertinent information. We intend to apply a survey on various populations, which will allow us to obtain rich and pertinent information (Getliffe, 2008).
In addition to questionnaires, we will interview the individual, who are relevant to this research project. After the interviews, we will self-administer questionnaires that will provide the required information to us. The Quality Care End of Life questionnaire will be concise, and it will intend to extract a particular type of information. This questionnaire will be validated (REF), which will add both authenticity and validity to the entire process, not just to the instrument of research. Such practice is common, as it ensures that researcher is gathering that evidence, which is authentic and required. If the gathered information is not authentic and irrelevant, then the entire project is in jeopardy. The questionnaire contains 16 components or items, which will aid in retrieving pertinent information. After the completion of these questionnaires, the respondents will put these questionnaires in a box so that they cannot be tampered with by anyone. Neither this questionnaire is complex nor is it lengthy, which is why we can provide this questionnaire to patients who can fill it with ease and comfort. The objective is that the questionnaire must reflect, with great accuracy, the experience of EOL of a dying patient. We intend to administer this questionnaire to Saudi HF patients, who are in their last stage.
Study Settings
It is expected that the studies would be conducted in the Aseer and Central provinces of Saudi Arabia, where the two Saudi Ministry of Health Hospitals are situated. The reason both these provinces were selected is that both the regions are different in socio-demographics which may highlight the perceptions of quality and attitudes towards the End-of-Life Care. Saudi Arabia’s Central region has a high prevalence and incidence of Cardiac Disease, and people living in this region tend to be more educated and have a better socio-economic status, whereas people living in the Aseer province are quite the opposite. Human research ethics clearance needs to be granted still, but the in-principle support has been obtained from both the hospitals.
The King Fahad Medical City (KFMC) is a government controlled public care center, which is situated in Riyadh, the capital city of Saudi Arabia in the Central Province Region. The public care center provides people with surgical and medical care, and It is an internationally recognized training center as it was granted the accreditation by the Joint Commission International (JCI). The King Fahad Medical City (KFMC) is the biggest hospital in Saudi Arabia, with over 1,200 beds.
The Aseer Central Hospital (ACH) is situated in the Aseer Province which is in the south region of Saudi Arabia. The ACH is a teaching medical center and hospital, with a total capacity of 500 clinical beds. (Al-Fifi, Shabana, Zayed, Al-Binali, & Al-Shehri, 2011)
Data Analysis of Interviews with the ED staff:
The interview transcripts are analyzed thematically (Guest, MacQueen, &Namey, 2012). Guest et al. (2016) and the thematic analysis will organize, report, and identify patterns within the dataset. The researcher will read the transcripts for this study independently, and he would then make notes about the patterns that are present in the data, and then it would be followed by the reiteration process of sorting the codes into possible themes and sub-themes of the barriers, needs, facilitators, and challenges that contribute to the quality of EOLC. In the end, the themes and sub-themes would be named, examined and defined regarding relation to each other. And the quotes would be written and then be represented by the data extracts. (Guest et al., 2012).
Rigour
The researcher would follow Lincoln and Guba’s research Criteria to ensure the trustworthiness and reliability of the research which consists of dependability, confirmability, credibility and transferability (61). The researcher would ensure that it is dependable by maintaining and keeping an audit trail of the analysis and methodological decisions which would help the advisory team in verifying the conclusions that are reached by the researcher. And to achieve transferability in the research, the researcher would have to use the data collection method of semi-structured interviews with the participants of the two regions (Aseer and Central Provinces) to meet the inclusion criteria. The researcher would ensure that the research is conformable by maintaining the inner coherence of the research findings, data, and interpretations. The researcher would ensure that the research is credible through the method of triangulation which consists of using different sources to collect data such as semi-structured interviews with different groups, that have the same aim of exploring the challenges and needs for safe, quality and appropriate End of Life care for the people that are diagnosed with final-stage heart failure in the emergency department sector of Saudi Arabia. (61).
8- Using a convenient and easy sampling approach, the patient would be recruited. And by using this nonprobability sampling method, the samples would then be selected and determined based on the researcher’s accessibility, and his capability to present meaningful and solid data. (Hibberts, Burke Johnson, & Hudson, 2012). As analyzed by Schuster & Power (2005), This approach would be used to allow and help the researcher approach each patient with Final-Stage Heart-Failure who are willing to participate in the research. Both the hospitals in the Central Province and Aseer would undertake this strategy.
Survey tool (QCQ–EOL)
Yun et al. developed Quality Care Questionnaire-End of Life and this questionnaire, of a particular type, which was validated in Korea. We must recognize that Korea also had challenges that Saudi Arabia faces; about culture-ethnicity-environment. The research instrument (questionnaire) was developed to retrieve evidence regarding the quality of care, even in acute settings (Yun et al., 2006).
The developed questionnaire has components, which provide evidence regarding clinical settings and to sense of dignity in overall care rating. In addition to that, many components have sub-components that allow us to retrieve richer data that can be of great importance. Furthermore, the research instrument not only provides information regarding settings and discussed attributes, but also it provides data regarding patients; control on life, hope, expectations, and perseverance (Yun et al., 2006).
For this research project, we intend to translate the questionnaire into Arabic, as it is the native language of Saudis.
Translation Process
The instrument, which we have selected to gather evidence or retrieve data, is freely available; however, the research instrument (questionnaire) is in the English language. The researchers intend to translate this research instrument or questionnaire in the Arabic language. For this process, we intend to use back-translation approach and bi-lingual test (Maneesriwongul & Dixon, 2004). It will add authenticity and validity to the translation process, which is essential.
The process of back-translation generally involves two or more qualified bilinguals, who must have National Accreditation Authority for Translators and Interpreters certificates as translators. The process of translation is further divided into sub-processes. First, the questionnaire will be translated into Arabic, and then the blind translation will be into English language from Arabic. If discrepancies were found in the translation, the entire process might be repeated (Maneesriwongul & Dixon, 2004).
Face Validity of Survey Tool by Panel of Experts
For the validity of the research instrument, we will hire the expertise of an expert, who will access clarity of language; whether the questionnaire and language of the questionnaire are comprehensible to the participants (Del Greco, Walop, & McCarthy, 1987; DeVon et al., 2007). Therefore, we will send the final version of our questionnaires to the experts so that could validate them. These experts will also ensure that queries and contexts of queries are by Saudi culture.
Also, we will also hire two ED professionals, who will assist us in developing the instrument (research) and in overall research.
Data Analysis of Survey (QCQ–EOL) for Patients with End-Stage HF
The software, which we will use for statistical analysis, is SPSS. It is a highly employed statistical analysis software that researchers prefer for data that is of primary nature. For the baseline demographics and outcome of data, we will use descriptive statistics (QCQ_EOL scores). To detect and examine the association between two sets of variables or the categories, we will use Pearson’s chi-square. To understand that variance between the continuous and categorical variables, we will use T-test. For the statistical analysis, confidence-level will be 0.05 (p-value).
Ethical Considerations
We will seek approvals, for this project, from the identified healthcare units in Saudi Arabia and the University of Queensland.
Studies reveal that terminally ill patients proactively engage in such research projects as these patients know that research projects bring qualitative differences to their lives. Such projects translate into policy and ease their burden and pain. As per one study, in the UK, 95% of the patients were happy to participate in such research project. Also, those who were left out wanted to part of the project (Prendergast & Luce, 1997).
As per another research about EOL patients, such studies are of high significance, and their advantages outweigh their disadvantages, as such studies provide essential information pertaining care and conditions of EOL patients. (Note: National Statement on Ethical Conduct in Human Research 2007). These new understandings will be of great significance, as they will allow ED settings to improve drastically.
As the EOL patients will be conscious, when we present questionnaires to them; therefore, they will be in a legal position and ethical position to sign these consent agreements. Also, we will not compel the patients to participate in this research activity; therefore, we will not force them to participate. Furthermore, we will allow participants to withdraw from the research project, whenever they want to. We also presume that because death will the subject of discussion, some of the patients may find themselves under some stress. We must recognize that death is a very unsettling subject, especially for those, who may embrace it sooner rather than later. Also, we will be accompanied by ED staff, which will clarify any ambiguities.
For the sake of confidentiality, the data will be encrypted, and we will assign numerical codes to each response. These numeric codes will also assist in identifying specific data (Cox & McDonald, 2013).
We will record the entire proceedings of semi-structured interviews of participants. It will allow us to keep the record of consent. This recorded data will be transcribed so that it can be used for various kinds of analysis. We will make sure that we all the names of the participants and assign them numeric codes to maintain their confidentiality (Cox & McDonald, 2013). We will not compel any participant, in any manner, to answer any questions which he/she does not want to ask. We will upload the entire activity and protect it with a password.
