A Study On The Perception Of Cancer Patients Towards Quality Of Life In Palliative Care Setting

Introduction

Palliative care is delivered to cancer patients who have established that their disease is incurable so that they can receive efficient health care to minimize disease progression (Regional Council of Medicine of the State of São Paulo, 2008). Such patients require a regular assessment of the quality of life because the physician’s main target is to improve their quality of life regardless of the cancer advancement stage.

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There is a fundamental difference between care delivered in a palliative setting and that delivered in the curative setting because in the former setting, patients and their families have to face the reality of death. Therefore, care delivered in palliative care setting has to be focused on improving the patients’ and their family’s quality of life through relief of suffering and appreciation of the spiritual and cultural values towards the death (World Health Organization, 2010).

The World Health Organization (WHO) defined the quality of life as how an individual perceives their position in life with regards to culture, expectations, goals, values, and standards of life (WHO, 2010). Within the healthcare context, quality of life refers to the impact of disease and the influencing treatment measures (Romero, 2013).

Nonetheless, quality of life assessment is a complex task due to its abstract and subjective nature. Similarly, the WHO seems to have adopted a complex definition, which reflects on the negative and positive characteristics of life. Yet, according to Minayo et al (2017), quality of life is a multidimensional phenomenon that entails relationship between an individual’s physio-psychological aspects and their environment, their social relationships, personal beliefs and level of independence. In an attempt to understand and enhance the quality of life among cancer patient, this study seeks to conduct a review of literature on the perception of cancer patients on the quality of life within the palliative care setting.

Research Objectives

  • To explore evidence on the perception of cancer patients about the quality of life
  • To identify factors influencing cancer patients’ perceptions of quality of life in the palliative care setting
  • To identify factors that improve cancer patients’ quality of life in palliative care settings

Literature Review

Whereas cancer treatment and cancer itself have an adverse influence on a person’s perception of the quality of life, the treatment aspect still plays a critical role in oncology (Holmenlund et al, 2017). Being diagnosed with cancer creates a significant change in a person’s way of life because it is accompanied by physical and emotional changes that create pain, discomfort, loss of self-esteem, dependency and disfigurement. Besides, according to Meneguin et al (2018), a cancer diagnosis is accompanied by stigmatization especially because it lacks a cure. With this regard, research by Teunissen et al (2007) indicates that at least 50% of cancer patients present 5 common symptoms (e.g. weight loss, pain, fatigue and weakness) that may affect their perception of the quality of life.

Therefore, assessing the patients’ quality of life can help in indicating and guiding the delivery of assistance to cancer patients by developing supportive public health policies and enhancing the conditions that determine the health and well-being of cancer patients. A recent systematic review by Catania et al (2017) highlighted that preparation for death, physical activity, and personal autonomy, emotional, spiritual and social are important determinants of quality of life among cancer patients. However, the study did not highlight how patients perceive their roles in acquiring these attributes, as well as the role of nurses in palliative care settings in assisting patients to acquire those attributes.

Assessing the quality of life in palliative care is a challenging task because the available psychometric instruments for measuring such perceptions lack the capability of assimilating the individuals’ real needs and values before there were affected by the disease. In a research by Meneguin et al (2018), the relationship between quality of life and health emerged when participants mentioned the pain in the final stage of the disease, highlighting the existence a relationship between the patient’s perception of the quality of life and the construct of physical well-being. These findings were, in fact, corroborative with the findings of other studies (Oliveira et al 2013; and Augustussen 2017) that the quality of life of patients with advanced cancer is affected by the diversity of cancer symptoms and severity of the disease.

Dulaney et al (2017) observed that discussing the prognosis and the role of palliative care with advanced cancer patients may positively impact their quality of life because undergoing the recommended treatments does impact on the disease progression nor reduce symptoms. Moreover, in a randomized control trial involving 733 patients with advanced cancer, Twelves et al (2017) found that disease progression worsens the patient’s quality of life.

According to Mi-Kyung & Mary (2017), palliative care aims to deliver a different approach to care and not a sign of failure of earlier interventions. It is focused on improving the patient and their family’s quality of life by relieving suffering and pain through spiritual and psychological support. In the study by Meneguin et al (2018), participants discussed the collective subject, in which they mentioned the lack of family support as an aspect that relates to their social characteristics. However, existing literature (e.g. Yang et al 2017) has indicated that family is the main source of emotional and social support to palliative care patients because of their vital role within the disease-health process. Similarly, the study by Yang et al (2017) found that the quality of life of cancer patients within various treatment stages is positively correlated with the social support they get from their families.

Some studies have also evaluated cancer patients’ perception of being a burden to the family and found interesting results. For instance, Adomo & Wallace (2017) found that advanced cancer patients have a perception of being a burden to family members especially with regards to not only the sense of helplessness imposed by the disease but also its influence on perception as well as costs. In another study conducted by Rossi et al (2017) on 1271 Italian cancer patient caregivers, the researchers found despite families being responsible for most costs associated with caring for the patient at home, these costs have a substantial impact on their savings. Similarly, another study conducted among Brazilian caregivers indicated that cancer can contribute to the financial downfall of families because some family members contribute their incomes towards the treatment while others leave work to care for the patients (Araujo et al, 2009). Ultimately, literature acknowledges the moral obligation imposed on family members take care of patients at their terminal illness and that without proper knowledge and skills of exercising these obligations, both the patients and family caregivers are exposed to various health and social vulnerabilities (Araujo et al, 2009).

Before taking up the task of caring for people in the last stages of their l9ives, there is a need to understand human beings beyond their biological characteristics; by understating their pain and suffering from different dimensions of life (Montoro et al, 2012). With this regard, according to Montoro et al (2012), palliative care practitioners often adopt spiritual and religious measures to deal with the suffering, stress and pain emanating from cancer, particularly because the constructs of religion and spirituality can relieve suffering by providing strength to continue living. Furthermore, participants in the study by Meneguin et al (2018) acknowledged that spirituality and religion contribute to quality living.

Regardless of being two distinct concepts, spirituality and religion are inherently intertwined. For instance, spirituality is the essence of a person’s search for the meaning of life. Besides, it is considered a protective measure that is personal and dynamic to the extent that it changes with different situations of life (Meneguin et al, 2018). Moreover, Meneguin et al (2018) assert that spirituality is connected to one’s relationship with God as well as their relationship with himself or others. On the other hand, religiosity is typically an expression of spirituality in various ways including doctrines, rituals and dogmas (Park et al, 2017).

Thus, many patients in palliative care rely on religion or spirituality as a source of hope and faith with the belief that they will get a good health. Within this context, many scholars have investigated the relationship between palliative care and religiosity, many of them finding a positive relationship between the two. For instance, studies by Bovero et al (2012) and Zhang et al (2012) found that religiosity and spirituality improve the quality of life among palliative care patients by reducing depression and stress. However, the results of only two studies may not be enough to make a concrete conclusion over the relationship between spirituality/religiosity and cancer patient’s perception of the quality of life. The proposed study, therefore, will seek further evidence on this relationship by comparing the findings of several other studies.

Research Methodology

The Systematic Literature Review Method

The proposed study is primarily a literature review that entails identifying, reviewing, evaluating and appraising the quality of evidence on the perception of the quality of life among cancer patients’ in the palliative care setting. The quality of life has remained an interesting topic of study for many researchers because it not only looks into how patients with terminal cancer illness feel about themselves but also how healthcare practitioners can improve the well-being of their patients (Nunamaker et al, 2012). Therefore, owing to the variety of literature materials on this particular topic, the researcher will follow a predetermined and systematic procedure of identifying and selecting specific literary materials for review. Thus, the proposed study will use systematic literature review methodology to gather empirical evidence on the perceptions of cancer patients about the quality of life in the palliative care setting. Compared to other types of literature review methods, systematic reviews rely on elaborate methods and processes for identifying, retrieving and reviewing literature for purpose of achieving the underlying research objectives (Orngreen & Levinsen, 2017).

Search Strategy

The study will apply a systematic approach to searching and retrieving literary materials. The process will include data gathering and analysis of findings to develop a comprehensive conclusion about the topic. Furthermore, as recommended by Crane et al (2017), the process will entail an evaluation of how effective each data source in answering the research question. The process will be so elaborate that it would be easier to duplicate if a different researcher would want to conduct a similar study.

Databases

The study will rely on three main online databases, namely EBSCO, Proquest, and Google Scholar. The researcher prefers the online databases due to their convenience and ease of use, especially with the keywords that make the task of searching for literature material easier than when a physical library is used (Crane et al, 2017). According to Ferran et al (2017), it is also easier to replicate the literature search process when online databases are used. Nonetheless, these databases were specifically selected due to their ease of access and abundance of literature material in palliative care nursing.

Search Terms

The quality of a systematic literature review depends on the nature of procedure followed in searching the literature. According to a systematic search of literature would yield better quality data than a non-systematic or disorganized search process. Therefore, the proposed study will begin with careful identification of search terms that will be of help with the search engines. To avoid missing out on any important literature material, the search terms will be developed from the key variables in the research topic, yielding keywords such as perception, palliative care, cancer, terminal illness, quality of life. Therefore, the keywords will spell out the key aspects of the research question develop the most suitable search outcomes (Cuervo-Cazurra et al, 2017).

The search terms will be used together with Boolean operators to develop a robust literature search process. According to Ross et al (2017), Boolean operators such as AND and OR are effective tools for developing precision and specificity of the search process so that only the relevant literature materials are retrieved. They can be used differently depending on the researcher’s approach to the search process. For instance, in the proposed study, the researcher intends to use AND to narrow down the search outcomes by combining unrelated words, while OR will be used to broaden the search by combining related words. Ultimately, the use of Boolean operators, together with search teams will hopefully enhance the retrieval of most relevant literature materials for review.

Inclusion/Exclusion Criteria

According to Ross et al (2017), many researchers use inclusion/exclusion criteria to establish the scope and relevance of their respective studies. This is especially important considering that patient perception of the quality of life has been studied from a different perspective with different researchers. Therefore, developing and implementing inclusion/exclusion criteria will facilitate the development and adherence to the study scope, thereby enhancing the validity and reliability of study outcomes (Nunamaker et al, 2012).

Numerous studies have been conducted on cancer patients’ perception of the quality of life in palliative care. Therefore, to ensure that only the most recent data are retrieved and reviewed, the proposed study will only include journal articles that were published in the year 2000 and beyond. Furthermore, only the studies focusing on the evaluation of the perception of cancer patients on the quality of life will be included in the review to ensure that the study focus is maintained. Besides, for easier evaluation of data, only studies published in the English language will be included. Furthermore, the researcher will only include studies that are retrievable in full text so that the entire research report is appraised. The following table illustrates the inclusion/exclusion criteria for the proposed study:

Critical Appraisal

The selected studies will undergo two steps of screening before being included in the review. The first screening will involve the study title, abstract and full body to check its relevance. The second screening will be done during the critical appraisal process as explained below.

Critical Appraisal

The researcher will use the Critical Appraisal Skills (CASP) framework t critically evaluate the quality of each journal article. The CASP checklist will be a vital tool in this process because each article will be checked against the checklist elements. The CASP checklist evaluates the quality of research article by asking two major questions, namely the validity of the findings as well as whether the findings are applicable in a local context.

Data Extraction

To ensure effective data extraction, the researcher will develop a data extraction tool. The tool will be used by both the reviewer and the supervisor to evaluate the aims, objectives, bibliographic information, results, strengths and limitations of the selected studies. The extracted data will then be synthesised based on grounded theory, which is a systematic way of analysing and comparing data from different sources (Nunamaker et al, 2012). Particularly, the grounded theory of data synthesis will be adopted because it focuses on the reality of the phenomenon under investigation. Nonetheless, the researcher will use a thematic analysis method of data analysis.

Ethical Consideration

Being secondary research, there are significant ethical considerations that will be made. For instance, the researcher will acknowledge all the authors of the reviewed studies through in-text citation and reference lists. Moreover, the researcher will not tolerate plagiarism, and this will be done by acknowledging all the authors of the literary materials used.

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References

  • Adorno G, Wallace C. Preparation for the end of life and life completion during late-stage lung cancer: an exploratory analysis. Palliat Supp Care [Internet]. 2017;18:1-11. Available from: https://www.ncbi.nlm.nih.gov/pubmed/28095941
  • Araujo LZS, Araujo CZS, Souto AKBA, Oliveira MS. Cuidador principal de paciente oncologico for a de possibilidade de cura, repercussoes deste encargo. Rev Bras Enferm [Internet]. 2009;62(1):32-7. Available from: http://www.scielo. br/pdf/reben/v62n1/05.pdf
  • Bovero A, Leombruni P, Miniotti M, Torta R. Religiosity, pain and depression in advanced cancer patients. World Cult Psychiatry Res Rev [Internet]. 2012;8(1):51-9. Available from: http://www.wcprr.org/wp-content/uploads/2014/ 04/2013.01.51-59.pdf
  • Catania G, Beccaro M, Costantini M, Timmis F, Zanini M, Aleo G, et al. What are the components of interventions focused on qualityof- life assessment in palliative care practice? a systematic review. J Hosp Palliative Nurs[Internet]. 2016;18(4):310-6. Available from: http://journals.lww.com/jhpn/Abstract/2016/08000/What_Are_the_Components_of_Interventions_Focused.8.aspx
  • Crane, A, Henriques, I, & Husted, B. 'Quants and Poets: Advancing Methods and Methodologies in Business and Society Research', Business & Society, 2017; 57, 1, pp. 3-25, Business Source Complete, EBSCOhost, viewed 20 January 2018.
  • Cuervo-Cazurra, A, Mudambi, R, Pedersen, T, & Piscitello, L., 'Research Methodology in Global Strategy Research', Global Strategy Journal, 2017; 7, 3, pp. 233-240, Business Source Complete, EBSCOhost, viewed 20 January 2018.
  • Ferran-Ferrer, N, Guallar, J, Abadal, E, & Server, A, 'Research Methods and Techniques in Spanish Library and Information Science Journals (2012-2014)', Information Research: An International Electronic Journal, 2017; 22, 1, ERIC.
  • Minayo MCS, Hartz ZMA, Buss PM. Qualidade de vida e saude: um debate necessario. Cienc Saude Colet[Internet]. 2000;5(1):7-18. Available from: http://www.scielo.br/pdf/csc/v5n1/7075.pdf
  • Meneguin S, Matos TDS, Ferreira MLSM. Perception of cancer patients in palliative care about quality of life. Rev Bras Enferm [Internet]. 2018;71(4):1998-2004. DOI: http://dx.doi.org/10.1590/0034-7167-2017-0360
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