Critique
Chronic obstructive pulmonary disease (COPD) is “a systemic disorder caused by smoking and is characterized by progressive irreversible, or partially reversible, airflow obstruction with systemic manifestations and recurrent exacerbations” (O’Donnell, DE et al, 2007). An attempt has been made to assess the paper by Kristina Ek and Britt-Marie Ternesedt aimed to study the lived in experience of persons living with chronic obstructive pulmonary disease at the end of life through a phenomenological research. “Phenomenology acknowledges that conscious acts bestow meanings and these meanings can be expressed pictorially or linguistically. The intentional relation is not a casual relation and the intentional object is not a real object” (Giorgi, 2005, p.77). A phenomenological analysis emphasizes “idiosyncratic meaning to individuals” and how individuals experience the world, not shared constructions as such (Ratcliff, n.d.) Though the research findings of Ek and colleague reflect the lived in experience of persons with COPD, a very small sample size restricts it to infer the experiences to be generalized and adopted in a wider perspective.
Introduction and review of literature
Analysis of the research paper by Ek and Ternesedt (2008) reveals that its title and abstract is apt and gives a gist of things that are going to be revealed in the paper. Addition of study approach in the title “a phenomenological study” is catchy and fits the subject under consideration, its implications to the society, and appropriateness of study method, as chronic obstructive pulmonary disease (COPD) imposes limitations on normal life and has a greater impact on quality of life, Phenomenology is the favourite research method frequently employed by qualitative researchers, though there are many styles of phenomenology, it has become a dominant means in the pursuit of knowledge development in nursing, and presents “credible displays of living knowledge for nursing” (Jones & Borbasi, 2004, p.99). Considering the fact that human sciences generally have as their task the objective determination of the subjective meanings that persons posit in situations in the world and study aims to analyse qualitative outcomes of persons at the end of life the title given to the paper is befitting to the theme.
Study aim
The aim of the study is to describe the essential structure of livid experience of living with chronic obstructive pulmonary disease during the palliative phase of the disease. The statement of purpose has been explained in discussion part of the paper, and the paragraph title “Limited living space” seems suitable and attractive, since the disease debilitate physical activity and force the patients to forgo meaningful activities and relationships in their daily life. The researchers admit that the subjects described living with COPD as being linked to loneliness that had both social and existential dimensions as the lack of physical strength forced people to accept being dependent on others and on various assistive devices.
Study question/objectives
The main research question in this study is to determine what the lived in experience of persons with COPD is and how it affects their social life. The areas explored to measure the individual experience of living with the disease comprised limited living space, changed lifestyle, and challenged self-image; effect of the disease on their physical strength; deprivation of activities they actually wanted to participate and important to them; loneliness and being socially and existentially alone; individual perception about worthiness of living with a chronic disease; social acceptance, and feeling meaningfulness and belongingness.
Quality and number of sources in the literature review
A literature review is “an account of what has been published on a topic by accredited scholars and researchers”, and it must be defined by a guiding concept that conveys to the reader what knowledge and ideas have been established on the topic, and what their strengths and weaknesses are (Taylor & Procter, 2008). A literature review must be organized around and related directly to the thesis or research question being developed, synthesize results into a summary of what is and is not known, identify controversy in the literature, and formulate questions that need further research.
In this phenomenological study Ek and Ternsetedt first introduced prevalence, causes, and symptoms and all the literature cited are predominantly latest and in chronological relevance, except the projected statistics for prevalence and incidence of COPD, which is an older reference of 1996. The literature referred includes patient’s experience of the symptoms, and how it affects their daily life, limiting physical capacity and quality of life that leads to anxiety, how it affect eating and isolation from shared meals, access to care and approach of health care providers towards care of patients with COPD. Adequate number of sources has been searched for the study and explanations to concepts and approaches of the study are supported with relevant literature connected to the subject from fifteen important studies. However, no relevant data in the field of palliative care have been quoted and no specific discussion carried out in the paper, though the reported aim of the study is to “describe the essential structure of the lived experience of living with severe COPD during the palliative phase of the disease. In addition, the recent approach of hospital at home for the care of patients with acute exacerbations of chronic obstructive pulmonary disease has not been addressed in this research paper.
Why the authors considered the study important
Authors hypothesized that chronic obstructive pulmonary disease has a great impact on the daily life and affects the degree to which the person can be active at home, participate in social relations and experience well-being. Giorgi (2005) opine that “the human participant is an embodied conscious being who bestows meaning in the world, with an historical past in the midst of a socio-cultural environment capable of linguistic and other modes of expression” with degrees of freedom with respect to choices concerning his or her destiny. The authors cite background and inspiration for the study as social alienation of persons suffering from COPD, which is third most common cause of death after myocardial infarction, and palliative care as the best alternative. However, they have not mentioned about any pilot study on the subject that can be extrapolated to give an international scenario. Hence, considering the small sample size of the study it has to be construed that it is a fresh initiative from their side, and current literature is silent about such studies on the subject of their choice. They set out to answer “the essential structure of the lived experience of living with severe COPD during the palliative are phase of the disease” by interviewing nine persons suffering from chronic obstructive pulmonary disease eligible for palliative care, registered with respiratory medicine departments of two different medical facilities in Sweden. It is stated that they encountered difficulty in defining the stage of the disease as many characteristics could indicate transition to palliative care. Hence, considering the small size of the subjects this research has to be viewed as a pilot study.
Methods
According to Giorgi (2005) good research design follows the sense of the investigation and should not automatically state, in an a priori way, what strategies must be used for the research and emphasizes that “the manner in which an object presents itself to the consciousness of the researcher is critical for determining the strategies that are to be used for studying it.”
Qualitative approach to data collection usually involves direct interaction with individuals, or small focus groups, on a one to one face-to-face basis or in a group setting. The qualitative data shall be collected through individual interviews, focus groups, and observation. The basic instrument prepared by Ek and colleage for this study is an open-ended interview questionnaire that was followed through conversations and was audio taped. There are five main short answer questions used to illuminate what the disease meant in everyday life; daily life before the onset of the disease; difficulties in daily life and ways of handling the situations; what gave happiness and meaning to life; and feelings and thoughts about future. The patients were asked to reply the questions and express personal opinion on their condition, and to go into more detail and guide the conversation further probing questions were asked. Prior consent from the participants who fulfilled the criteria that they are in sufficiently good condition to be interviewed and that they could understand and speak Swedish has been obtained by the researchers. The interviews ranged from 20 to 90 minutes and mostly were held at the participant’s convenience. The location of the study was two different hospitals and departments of respiratory medicine in Sweden and the willing informants included five women and three men aged 48-79 years. A nurse at each of the two departments selected the patients, who gave initial information about the study design and purpose to the patients and obtained patient’s consent before sending information letter.
Ethical issues associated with the study
It is obligatory on the part of all researchers to obtain the informed consent from their subjects and address any ethical considerations involved in the study. An informed consent should cover purpose of the study, what the subject can expect during the study, amount of time involved, risks and benefits from participation in the study, whom to contact if the subject has any query about the study, and an assurance to the effect that the subject may withdraw from the study at any time without detriment to continued treatment. The researchers obtained permission to conduct the study from local administrators at the hospitals and from the local research ethics committee. Written consent was obtained at the interview time. The researchers have given undue consideration for the ethically sensitive aspect of the study that the interviews were being conducted with people who are severely ill and in a palliative phase of their disease. The interview was interrupted whenever the patient need to rest and the length of interview was based on the patient’s wish. The choice of interview method was motivated by the fact that many severely ill patients value talking about their experiences and an interview can have a positive effect on a patient’s well-being. It can be concluded that the researchers paid utmost priority in meeting the ethical issues associated with the study.
Method(s) of data analysis
The procedure of Giorgi and Giorgi (2003) was followed in all phases of the analysis and included in five steps of repeated reading of each interview to get a sense of the whole by the interviewer and dividing it into meaning units that was transformed to nursing meaning of the patient’s experience, and common features of the experience transformed into five constituents, which was integrated to form the common structure of the lived experience. Analysis of data in a research project involves “summarising the mass of data collected and presenting the results in a way that communicates the most important features” (Hancock, 2002). Qualitative data is difficult to analyse, because it comprise words rather than numbers. Hence, it require a method of identifying and labelling items of data, which appear in the text of a transcript so that all the items of data in one interview can be compared with data collected from other interviews, and the process is called content analysis.
A conscious effort was made to address trustworthiness by being true to the principles of phenomenological inquiry. By giving full description of the participants and how the data were collected, tape recording the interview proceedings, and being as open as possible to participants and allowing them to speak freely accuracy and credibility of the data has been maintained. For arriving at a agreeable decision the first author carried out the analysis of the interviews and the second author discussed and validated the transformations, key constituents and structure and their preunderstanding was based on practical experience gained from palliative nursing care (Ke) and research on palliative care (B-MT).
Results
It is found that participant’s descriptions of living with COPD in their current situation were always related to the life they had lived before becoming ill and the vacillation in thoughts about future were more or less apparent in the various individual narratives. Despite participant’s limitations in living space and changed lifestyle they also experienced happy times and a sense of meaningfulness that was often related to a feeling of belonging. The most troublesome symptom was difficulty in breathing and attacks of dyspnoea contributed to anxiety, and oxygen therapy hampers social activities. Recurrence of existential loneliness particularly less attention from healthcare personnel aggravates social isolation of COPD patients. Frequent fluctuation in health condition and physical limitations entailed mental stress and feelings of meaninglessness. It is opined that by planning the day, setting priorities and choosing the activities that seemed most important, daily life could still be experienced as meaningful. Influences on self-image were expressed to a varying extent and were affected by relationships with those closest to them, including family, friends and professional caregivers and data showed that patients required more support, which should include relatives. The researchers summarize their study by stating that “our participants described lives that were limited because of physical, psychological and social losses, and there were lived with daily uncertainty as to what the next day would bring, fluctuating from meaningfulness to meaninglessness. The study findings are supported with the observations of Elofsson and Ohlen (2004), Fraser et al (2006), and Ternestedt (1998).
Discussion
The suggestion for access to relatives for patients with COPD to be cared for at home, especially during the final year of life when contact with professional caregivers was more sporadic, is in conformity to the findings of Elkington et al (2005). The researchers conclude that their findings affirm the many negative consequences of COPD and it is very easy to focus only on these. However, they failed to provide concrete evidence for palliative care requirement, which was cited as the aim of the study, or hospital at home services, which is the current approach in patients with exacerbated COPD, for eliminating the sufferings of their COPD subjects.
Identification of limitations, and recommendations for further research
The researchers admit the limitations of their study to the interviews with only a few patients, living in one geographical location, and the patients were interviewed only on one occasion. They believe that repeated interviews with both patients and close relatives would further increase their understanding of life with COPD. There is no clear directive for future research, except that knowledge is needed about how family interactions are affected when a family members has chronic obtrusive pulmonary disease. What further suggestions are there for palliative care or hospital at home services for COPD patients at the end of their life is also absent from the study.
Presentation
The paper is reported in an appropriate format and the researchers are found to be an asset to the scientific world, except the limitation of their data base, which could be expanded in future study. Since research findings are expected to benefit the community concerned and larger section of the society, the language used should be understandable and respectful. The researchers have made justice to their work by using simple, direct, and concise writing throughout the paper. But, the sentence in the conclusion paragraph “However, our interviewees made it clear that there was more to their lives than this, and that they wanted more from their lives than this” looks vague and wavering and does not drive the reader to their intended message.
Adequate care has been allowed in referencing and is conforming to APA style manual and the reference list is arranged in alphabetically ascending order. Most of the references are from peer reviewed journal articles and comprises diverse field of specialization, and all the sources quoted in the paper are relevant to the study. Overall the paper adheres to style, content, and presentation and a critical review will benefit the researchers in their future study.
Research is conducted, among other things, “to gain knowledge, to share that knowledge with other communities and organizations, to partner with communities and other organizations to address concerns, to implement strategies that are uncovered by the research experience, and to evaluate the quality of life” (Isles Research Principles, 2003)
Community based research is a collaboration between community groups and researchers for the purpose of creating new knowledge or understanding about a practical community issue for bringing about change, and “it takes place in community settings and involves community members in the design and implementation of research projects” (University of Washington, nd).
Community based research aims to contribute to knowledge related to the determinants of health and well-being while combining and balancing that generation of knowledge with change efforts that benefit that communities involved. The objective of any community-based research emphasizes on the relevance of public health problems and examines the social, economic, and cultural conditions that influence health status and its purpose is to enhance our understanding of issues affecting the community and to develop, implement, and evaluate plans of action for addressing those issues, which is beneficial to the community.
Significance of research findings for nursing practice
There are broadly two approaches to collecting information for research purposes, namely qualitative and quantitative research, and qualitative research attempts to increase our understanding human behaviour and social trends. Ek and colleague used qualitative health research methods as it provide a distinctive approach to recording and interpreting patient’s perceptions and opinions, which can be used while developing and evaluating new treatment approaches. Nursing has a concern to understand the human condition rather than the phenomena as such, and phenomenology is considered as an established research approach for nursing.
The topic added to our knowledge that: the living space of chronic obstructive pulmonary disease patients is quite limited, social isolation and existential loneliness was common and there is a great need for dialogue; and increasing dependence on others is a challenge to these patient’s sense of identity and self esteem.
Relevance for further studies
In the United Kingdom, chronic obstructive pulmonary disease (COPD) are the most common cause of admission to hospital for respiratory illness, which account for about 10% of all acute admissions, and the cost of a typical hospital admission was estimated as 3000 pounds. Considering the hospitalization cost involved in caring COPD patients, studies are intent to find intermediate care for early discharge schemes for patients experiencing acute incidence of chronic obstructive pulmonary disease. Based on the study by Ram et al (2004), it is suggested that the recent innovation in the management of such exacerbations through hospital at home services can be used as an alternative to hospital admission and are safe and suitable option after an initial hospital assessment. This suggestion has been supported by research findings of Tylor et al (2007), and they recommend that hospital at home appear to be an effective and safe option for selected patients. The evidence based statement on the basis of National Institute for Clinical Excellence (NICE) COPD guidelines sum up that there were no significant differences in forced expiratory volume in 1 second, readmission rates, mortality, or number of days in care between Hospital-at-Home (HaH) and hospital care. However, British Thoracic Society Guideline Development Group opine that the NICE guidelines leave many unanswered questions, in the domain of patient assessment, aim of HaH in avoiding admission, hours of operation, modification to treatment policy, competencies necessary to deliver HaH, etc. After a systematic literature review of relevant studies between 1966 and April 2005, the Guideline Development Group has made an effort to resolve the uncertainties experienced by hospitals intending to set up HaH for exacerbations of COPD through “BTS Guidelines” that contain recommendations for majority of the unanswered questions (2007). According to Todd et al (2008) “an evidence based approach to managing COPD with a primary care chronic disease management model could improve quality of life for patients with COPD.”
Whereas, Yohannes (200&) argues that “currently there is a lack of palliative care provision for patient with advanced stage COPD” and populations surveys on status of COPD patients in five European countries and US have reported that “health status of patients was worse than death. Since patients receiving palliative care are less likely to be admitted to intensive care unit during hospitalization, incur lower inpatient costs, and receive better medical care provisions compared to the usual care patient, it is suggested that palliative care may help reducing health care costs and may avoid admission into the intensive care unit for patient with COPD.
Reference
BTS Guidelines. (2007). Intermediate care—Hospital-at-Home in Chronic obstructive pulmonary disease: British Thoracic Society Guideline. Thorax, 62: 200-210. doi:10.1136/thx.2006.064931. Web.
Elkington, H, White, P, Agton-Hall, J, Higgs, R, & Edmond, P. (2005). The needs of chronic obstructive pulmonary disease patients in the last year of life. Palliative Medicine, 19: 485-491.
Elofsson, CL, & Ohlen, J. (2004). Meanings of being old and living with chronic obstructive pulmonary disease. Palliative Medicine, 18: 611-618.
Hancock, (2002). Web.
Fraser, DD, Kee, CC, & Minick, P. 9 (2006). Living with chronic obstructive pulmonary disease: Insiders perspective. Journal of Advanced Nursing, 55: 550-558.
Giorgi, Amedeo. (2005). The Phenomenological Movement and Research in the Human Sciences. Nursing Science Quarterly, 18(1): 75-82. Web.
Hancock, B. (2002). Research and Development in Primary Health Care: An Introduction to Qualitative Research. Trent Focus. Web.
Jones, J & Borbasi, S. (2004). Interpretive research: weaving a phenomenological test. In: Clare, J, , Hamilton, H. (Eds.), Writing Research. Transforming data into Text. Churchill Livingstone, Edinburgh. Isles Research Principles. (2003). Web.
O’Donnell, DE, Aaron, J, Bourbeau, J, Hemandez, P, Marciniuk, DD.et al. Canadian Thoracic society recommendations for management of chronic obstructive pulmonary disease. Can Respir J, 14(Suppl B): 5B-32B.
Ram, FSF, Wedzicha, JA, Wright, J, & Greenstone, M. (2004). Hospital at home for patients with acute exacerbations of chronic obstructive pulmonary disease: Systematic review of evidence. BMJ, 329(7461): 315. doi: 10.1136/bmj.38159.650347.55.
Ratcliff, D. (n.d.). 15 Methods of Data Analysis in Qualitative Research. Web.
Taylor, D & Procter, M. (2008). The Literature Review: A Few Tips on Conducting It. Univerity of Toronto. Web.
Taylor, S, Eldridge, S, Chang, YM, Sohanpal, R, & Clarke, A. (2007). Evaluating hospital at home and early discharge schemes for patients with an acute exacerbation of COPD. Chronic Respiratory Disease, 4(1):33-43. Web.
Todd, DC, McIvor, RA, Pugsley, SO, & Cox, G. (2008). Approach to chronic obstructive pulmonary disease in primary care. Can Fam Physician. 54(5): 706-711.
Unversityof Washington: School of Public Health and Community Medicine. (n.d.). Community-Based Research Principles. Web.
Yohannes, AM. (2007): Palliative care provision for patients with chronic obstructive pulmonary disease. Health Qual Life Outcomes. 5: 17 doi: 10.1186/1477-7525-5-17. Web.