CULTURAL ISSUES RELATED TO DISEASEAND ILLNESS

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CHAPTER 3: PRELIMINARY LITERATURE REVIEW

INTRODUCTION

Literature review refers to a systematic search of existing information about a phenomenon being studied and entails reviewing and summarising existing evidence (Polit & Beck 2010:558). In qualitative research, some authors suggest that literature review should be done only after data analysis (Streubert & Carpenter 2011:25), claiming that it contributes to bias and unduly interferes with pure description of the phenomenon. However, I share Creswell‟s (2005:79) opinion that preliminary review of literature is essential because it helps to focus and give direction to the study. Streubert and Carpenter (2011:25) also hold the view that reviewing related literature prior to data collection helps to refine the research question, select a theoretical framework and build a case for why and how the study will be conducted. Streubert and Carpenter (2011:25) add that post hoc review of literature helps the qualitative researcher to place the findings of the study within the context of the already “known”.
Creswell (2005:79) considers review of literature before, during and after data collection vital to ensure that the research reflects current knowledge in the area and incorporates what others have done to enrich the process and outcome of a study. Polit and Beck (2010:170) too are of the opinion that literature review provides readers with background for understanding current knowledge about the phenomenon and to illuminate the significance of the study. I settled for preliminary literature review, prior to data collection to give direction for the study followed by thorough review of literature following data analysis as Streubert and Carpenter (2011:25-26) advocate. Moreover, Van der Wal (1999) as cited in Mongwe (2007:51) thinks that reviewing literature early in the study facilitates the researcher‟s entry into the first moment of the research process; that is identification of the phenomenon and how to articulate it. I countered the “investigator bias” that is believed to arise by engaging in preliminary review of literature through reflexivity. This was achieved by remaining aware of these “pre-understandings” and open to participants‟ ideas. The post hoc literature review helped in placing the findings in context of what is known.

 GUIDING FRAMEWORK FOR LITERATURE REVIEW

The literature review begun with synthesis of pertinent and most recent information on Ebola virus and the haemorrhagic syndrome. The effects of socio-cultural perspectives related to life threatening disease on individuals and families were explored, including life experience accounts of life threatening and highly stigmatised conditions. The review ended with coping strategies and needs of affected persons.
The search of literature was mainly internet based using the UNISA electronic library repertoire and other resources including those suggested for qualitative research in the UNISA Department of Health Studies, Tutorial letters MNUALL-L/301/2006 and MNUALLL/301/0/2012. The researcher also used CD-ROMS and online databases like CINAHL, MEDLINE, Scopus, Ovid and PubMed to review e-books, journal articles in nursing, public health, mental health, medicine and infectious diseases. Literature came from print books, master‟s dissertations and doctoral theses, as well as from newsletters and newspapers. This information was carefully analysed for relevance and meaningfulness, summarised and then categorised to focus the study.

 EBOLAVIRUS AND THE HAEMORRHAGIC SYNDROME

This section enunciates the classification, morphology, infection process, natural ecology and method of transmission of Ebola virus and global epidemic patterns of outbreaks including diagnostic criteria, pathogenicity, clinical features, immunology and current therapeutic and epidemic management and containment strategies.

Classification and taxonomy

The Centres for Disease Control and Prevention, (CDC) (2010:1-2) classifies Ebola virus as Biosafety Risk Group 4 agent, (refer to section 1.14.11), the highest scale of biosafety rating, due to the high health risk it poses for laboratory personnel and the public. Sanchez, Geisbert and Feldmann (2007:1409) point out that Ebola is a lipid-enveloped, single, negative stranded Ribonucleic Acid, RNA virus, of the genus Ebola in the family filoviridae and order Mononegavirales. According to WHO (2012:1-2) and Qiu, Fernando, Melito, Audet, Feldmann, Kobinger, Alimonti and Jones (2012:1575), Ebola and Marburg viruses are the only filoviruses that cause severe haemorrhagic fever syndrome in humans and non-human primates such as monkeys and chimpanzees. When compared, the CDC (2012:1-3) confirms that to date (January 2013), Marburg virus consists of only one specie whilst Ebola virus comprises five species including Bundibugyo Ebolavirus (BEBOV), Zaïre Ebolavirus (ZEBOV), Sudan Ebolavirus (SEBOV), Reston Ebolavirus (REBOV) and Taï Forest Virus (TAFV, formerly, Cote d’Ivoire Ebolavirus (CIEBOV). All these Ebola virus subtypes are named after the country or location in which the virus was first isolated.

Morphology

In innate states, Ebola viruses are filamentous and pleomorphic and often take on different shapes; may be long filaments, branched, „U‟- shaped, „6‟-shaped or circular forms (Leroy et al 2011:964) as shown in figures 3.1, 3.2 and 3.3. Generally, Ebola virus particles have a uniform diameter of 80 nm but vary in lengths up to 14000 nm (Sanchez, Geisbert & Feldmann 2006:1409-1410; Feldmann & Geisbert 2011:849).

 Ecological and geographical distribution of Ebola viruses

Feldmann and Geisbert (2012:3) classify Ebola haemorrhagic fever as a classical zoonosis, because of its ability to be transmitted naturally from vertebrate animals to humans and vice-versa. The CDC (2010:1-4) confirms that despite the fact that non-human primates have repeatedly been a source of infection for humans, the natural reservoir of the virus still remains unknown. In the past, rodents have been named by Morvan, Deubel, Gounon, Nakouné, Barrière, Murri, Perpète, Selekon, Coudrier, Gautier-Hion, Colyn and Volehkov (1999:1193) as being the natural reservoirs, and more recently, bats have been implicated by Leroy, Kumulungui, Pourrut, Rouquet, Hassanin, Yaba, Délicat, Paweska, Gonzalez and Swanepoel (2005:575) as well. Similarly, evidence of Zaire Ebola virus in naturally infected fruit bats has been documented by Pourrut , Délicat, Rollin, Ksiazek, Gonzalez, Leroy (2007:176), and Leroy and others (2005:575) following detection of viral RNA and antibodies in three tree-roosting species: Hypsignathus monstrosus, Epomops franqueti, and Myonycteris torquata. However, despite these efforts, Feldmann and Geisbert (2012:3) confirm that to date (December 2013) the Ebolavirus has not been isolated from any naturally infected animals. What is clear is that the virus is endemic in rain forests of Africa and the Western Pacific region and that like humans, non-human primates get infected directly from „unknown‟ natural reservoirs (Schnirring 2008:2).
In recent times several studies have been conducted to identify the natural reservoir of both Ebola and Marburg virus. This is in keeping with Feldmann and Geisbert‟s (2012:3) report that laboratory observations in Uganda showed that some bats infected experimentally with filoviruses do not die, raising the possibility that they may be the natural reservoirs. This discovery, as reported by Ampaire (2007:16) and Bogere (2007:5) led scientists to engage in a large scale effort to test African fruit bats in south-western Uganda. The study involved collecting blood and organ samples from the fruit bats from their habitats in the gold mines and caves in the region and then analysing the specimen in the laboratory as in figure 3.6. These laboratory findings according to the WHO (2007:1-2; 2012b:2-4) corroborate earlier findings in Gabon and the DRC on similar bat species, further augmenting the claim that the African fruit bats of the Pteropodidae family may be natural host of filovirus.

 Method of transmission of Ebolavirus

The primary mode of transmission from the natural reservoir to humans or primates remains unknown according to the CDC (2010:1-2) although most outbreaks appear to be zoonotic. However, the Centre for Infectious Disease Research and Policy, CIDRAP (2009:1-3) notes that despite being zoonotic, filoviruses are neither spread continuously from person to person nor do they remain latent in primates. The main secondary mode of transmission from person-to-person has been nosocomial infection starting with contact with blood and body fluids from an infected person.
WHO (2008:2) also documents that infection occurs through direct inoculation from contaminated instruments and infected droplets via mucous membranes, in addition to the cases of secondary infection to humans after handling primates (CDC 2008:2).
In hospitals, the CIDRAP (2009:1-4) reports, that health workers may become infected while treating patients through close contact, especially when they don‟t use proper precautions or barrier nursing. In community settings, Lamunu and colleagues (2002:4) report that burial ceremonies especially funeral rituals are key in spreading the virus, particularly where direct contact is made while fulfilling cultural burial rituals involving deceased relatives. Once infected, the CDC (2009:1-2) reports that the incubation period ranges from 2 to 21 days and as the infection progresses, patients become contagious, especially after developing the early signs and symptoms of the disease – particularly high grade fever and severe headache. Generally, larger outbreaks have tended to occur after infected patients enter healthcare systems where barrier nursing and epidemic control practices are inadequate (CDC 2009:2).

 Ebolavirus outbreaks and epidemic patterns

The declaration by WHO (2008:1-2) that Ebolavirus is endemic in tropical rainforests of Zaire, Sudan, Central African Republic, Gabon, Nigeria, Ivory Coast, Liberia, Cameroon and Western Pacific underscores the possibility of more epidemics in these areas and in the surrounding regions in the future. This claim is further supported by the sporadic Ebola epidemics that have continued to occur as affirmed by Feldmann and Geisbert (2012:20) and WHO (2012:1-2). In the subsequent section, seasonal and historical outbreak patterns of Ebola outbreaks are described.

CHAPTER 1:BACKGROUND AND ORIENTATON TO THE STUDY
1.1 INTRODUCTION
1.2. BACKGROUND TO THE STUDY
1.3. THE PROBLEM STATEMENT
1.4. RESEARCH PURPOSE
1.5. RESEARCH OBJECTIVES
1.6. THE GUIDING RESEARCH QUESTIONS
1.7. RESEARCH PARADIGM
1.8. RESEARCH DESIGN AND METHOD
1.9. MEASURES TO ENSURE TRUSTWORTHINESS
1.10. META -THEORETICAL FOUNDATIONS OF THE STUDY
1.11. ETHICAL CONSIDERATIONS
1.12. SCOPE AND LIMITATION OF THE STUD
1.13. SIGNIFICANCE OF THE STUDY
1.14. DEFINITION OF KEY CONCEPTS
1.15. STRUCTURE OF THE THESIS
CHAPTER 2: PHENOMENOLOGY: METHODOLOGICAL FOUNDATIONS OF THE STUD
2.1. INTRODUCTION
2.2. ORIGIN AND ESSENCE OF PHENOMENOLOGY
2.3. PHENOMENOLOGICAL VIEW OF HUMAN NATURE
2.4. TRANSITIONS OF THE PHENOMENOLOGICAL MOVEMENT
2.5. FOCUS OF PHENOMENOLOGICAL INVESTIGATIONS
2.6. PHENOMENOLOGY AS A RESEARCH METHOD
2.7. MOTIVATION FOR SELECTING PHENOMENOLOGY
2.8. CONCLUSION 70
CHAPTER 3: PRELIMINARY LITERATURE REVIEW
3.1. INTRODUCTION
3.2. GUIDING FRAMEWORK FOR LITERATURE REVIEW
3.3. EBOLAVIRUS AND THE HAEMORRHAGIC SYNDROME
3.4. CULTURAL ISSUES RELATED TO DISEASEAND ILLNESS
3.5. EXPERIENCING THE THREAT OF LIFE-THREATENING ILLNESS
3.6. COPING STRATEGIES FOLLOWING LIFE-THREATENING ILLNESS
3.7. INDIVIDUAL HEALTH NEEDS AFTER LIFE THREATENING ILLNESS117
CHAPTER 4 RESEARCH DESIGN AND METHOD
4.1. INTRODUCTION
4.2. THE RESEARCH METHOD AND DESIGN
4.3. NATURE OF QUALITATIVE RESEARCH
4.4. POPULATION AND SAMPLING TECHNIQUE
4.5. THE RESEARCH INSTRUMENT
4.6. DATA COLLECTION
4.8. ETHICAL CONSIDERATIONS
4.9. CRITERIA TO ESTABLISH QUALITY AND TRUSTWORTHINESS
4.10. CONCLUSION
CHAPTER 5: DATA ANALYSIS
5.1. INTRODUCTION
5.2. GENERAL PRINCIPLES OF QUALITATIVE DATA ANALYSIS
5.3. FUNDAMENTALS OF PHENOMENOLOGICAL DATA ANALYSIS
5.5. CONCLUSION
CHAPTER 6: PRESENTATION OF DATA WITH LITERATURE SUPPORT
6.1. INTRODUCTION
6.2. DESCRIPTIVE OVERVIEW OF LIVING UNDER CONSTANT THREAT OF EBOLA
6.3. NATURE OF EBOLA EXPERIENCE: UNIQUE AND GENERAL ASPECTS
6.4. SURVIVING EBOLA: IMPLICATIONS FOR SURVIVORS AND CAREGIVER
6.5. CARING FOR EBOLA PATIENTS: MEANINGS AND IMPLICATION
6.6. PUBLIC REACTION TOWARDS SURVIVORS AND CARE GIVERS
6.7. SOCIAL-CULTURAL BELIEFS AND PRACTICES RELATED TO EBOLA
6.8. COPING WITH AND LIVING IN AFTERMATH OF EBOLA
6.9. CONCLUSION
CHAPTER 7: RELATING EMERGENT CONSTRUCTS TO EXISTING THEORIES
7.1. INTRODUCTION
7.2. RELATING ADAPTATION TO EXISTING THEORIES
7.3. OUTCOME OF SURVIVORS’, CAREGIVERS’ AND COMMUNITY’S ADAPTATION .
7.4. CONCLUSION.
CHAPTER 8: SUMMARY OF FINDINGS, CONCLUSIONS, RECOMMENDATIONS, PROPOSED GUIDELINES AND LIMITATIONS
8.1. INTRODUCTION
8.2. PURPOSE OF THE STUDY
8.3. GUIDING RESEARCH QUESTION
8.4. RESEARCH DESIGN AND METHOD
8.5. FINDINGS, CONCLUSIONS AND RECOMMENDATIONS
8.6. LIMITATIONS OF THE STUDY
8.7. RECOMMENDATIONS FOR FURTHER RESEARCH
8.8. RECOMMENDATIONS FOR THEORY DEVELOPMENT
8.9. GUIDELINES TO ENHANCE SURVIVORS’ & CAREGIVERS’ RESILIENCE
8.10. CONCLUSION
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LIVING UNDER THE THREAT OF EBOLA: A PHENOMENOLOGICAL STUDY