Social Research in Health and Illness

Case-Based Approaches

Constantinos N. Phellas, Costas S. Constantinou

• Publisher: Routledge
• Year: 2017
• eBook ISBN: 9781317053521
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Social Research in Health and Illness offers a theoretically informed guide to practising the key social research methods in investigating health and illness. Examining both methods and methodology, the authors explore the importance of selecting the appropriate research method for the project in question, demonstrating that researchers do not simply apply a set of neutral techniques to the issues that they investigate, but take part in a dynamic, reflective engagement with social and cultural worlds in a process of continual learning.

With its application of a variety of research methods to concrete cases, this book provides a sociology of specific health conditions, thus rendering them more understandable, whilst clarifying the nature of research concepts, approaches, methods and methodologies by demonstrating their use in real-life settings. Drawing on case studies involving a range of health conditions, including mental illness, HIV, diabetes, kidney disease, Alzheimer's disease, heart disease, breast cancer, thalassaemia and multiple sclerosis, the authors examine a range of methodological issues, exploring the use of focus groups, observation, data archives, interviews and surveys, while also considering questions of ethics and analysis.

A comprehensive and practical examination of research methods in use in a defined field of social scientific enquiry, this volume is essential reading for scholars, graduate students and healthcare professionals with interests in conducting qualitative and quantitative research in the fields of health and medicine.

1 Literature review

Experiencing chronic illness

Abstract

Annie Hirschfeld is an early-stage social researcher who has recently developed an interest in the field of health. Specifically, she wants to focus on chronic illness; however, before formulating any research proposals, she would like to explore the existing literature on how chronic illness has been studied as a social experience.

This chapter serves as an introduction to the following chapters on two levels. First, a review of the literature is necessary for all publications and research studies, regardless of the research method used. Therefore, this chapter is an introduction to how a literature review should be conducted pertaining to any studies and publications in the field of social sciences of health. Second, the chapter will also function as an introduction to the sociology of chronic illness preparing the grounds for understanding the research methods in more depth, which will be applied to specific chronic conditions in Chapters 2 to 10.

Learning objectives:

• Define what a literature review is.

• Explain the importance of reviewing the literature.

• Describe the steps involved in conducting a literature review.

• Outline the method of finding and examining the literature, as well as the process of presenting and discussing the results.

Scenario

Annie Hersfield is an early-stage social researcher who has recently developed an interest in the field of health. Specifically, she wants to focus on chronic illness; however, before formulating any research proposals, she would like to explore the existing literature on how chronic illness has been studied as a social experience. She begins by searching for information related to chronic illness. She first attempts this using the search engine Google Scholar and ends up with nearly three million references on the topic. Similar search engines, such as OVID, do not yield a different outcome. Annie is puzzled and worried; she cannot figure out whether she is doing something wrong. She decides to see whether she can identify any guidelines on how to conduct a literature review. She is relieved to fmd out that she was indeed doing something wrong and that she should have decided on a more focused and structured approach. What follows in the chapter is an amalgamation of information from Aveyard’s (2010) Literature Review in Health and Social Care: A Practical Guide; Jesson and Lacey’s (2006) How to Do (or Not to Do) a Critical Literature Review; The Cochrane Collaboration Guide to Systematic Review; basic textbooks in the field, such as Bowling’s (2014) Research Methods in Health: Investigating Health and Health Services and Green and Thorogood’s (2009) Qualitative Methods for Health Research as well as the authors’ experiences. This is because all these sources share many similarities, and we thought to write a more general text that has been influenced by all of them. Wherever we draw on specific terms or procedures, we indicate the source more specifically.

Discuss

• What was Annie doing wrong?

• How can Annie be more organised and focused in her search?

Defining literature review

Annie wants to answer the question “How do patients experience chronic illness?” She aims to read as many resources as possible and summarise her findings in an analytical way. Given the difficulty she has already faced, it would be a good idea for her to revisit the relevant guides to better understand what a literature review is and how it could be carried out in an effective and scientific way.

Let us start with what a literature review is not. A literature review is not a series of summaries or a list of pieces of information found in existing published works. If a literature review consisted of summaries, it would be easily produced by stringing together a number of abstracts. Indeed, researchers often make the mistake of merely reading the abstract and not the entire resource. Given this, reviewing the literature entails more than simply summarising and, therefore, requires careful attention and dedication in order to produce a useful outcome.

According to Jesson and Lacey (2006: 140), a review of the literature is “a narrative account of information that is already currently available, accessible and published, which may be written from a number of differing paradigms or perspectives, depending on the standpoint of the writer”. A “narrative account” refers to a text that is the reviewer’s construct and links together the fmdings from the reviewed resources. Along similar lines, Aveyard (2010: 5) wrote: “a literature review is the comprehensive study and interpretation of literature that relates to a particular topic.” To interpret and narrate their account effectively, researchers need to have a research question in mind when reviewing the relevant literature. In other words, a literature review is a methodology of researching and reviewing existing material and generating conclusions that do not exist in the individual resources reviewed. Thus, the resources selected for review are actually research data, which need to be well selected and directly relevant to the research question. The results need to be presented and discussed as in any other research study. So, Annie is expected to conduct a research study of existing resources and construct her narrative so as to present the results and the conclusions that she arrived at.

Discuss

• Why does Annie need to conduct a literature review? Why is it useful?

• Could Annie make any contribution to academic scholarship by reviewing the literature?

Why should researchers review the literature?

Now that we have explained what a literature review is, there are a few main reasons why Annie should review the literature. First, she needs to lay the ground for her own research; more specifically, Annie should be aware of what is already known about the area she is interested in researching and how much has already been answered in regard to her research question. Second, Annie should avoid duplicating research studies. Therefore, a thorough review of the literature would help her to make sure that what she wants to study has not yet been explored by other researchers. In this way, her research question is now justified, in the sense that she can demonstrate why there is a need to research what she wants to examine. In other words, instead of repeating studies already undertaken and published, reviewing the literature would help inform Annie of what research is missing in a particular area. Having to identify gaps in research and justify the need for researching particular topics or answering research questions is fundamental not only to the advancement of scholarship but also for securing external funds.

A third reason to conduct a literature review is in order to answer a specific research question by reviewing all the studies that have already been published. This does not entail having Annie write a series of summaries; rather, she would review the studies critically and reach a conclusion that is not found in any of the individual studies. In other words, Annie’s conclusion would go beyond what one would read in the individual studies. This requires a deep understanding of the studies or resources used and a well-developed academic imagination in order to put forward new conclusions based on the previous ones. So, Annie may discover new terrain that had not been identified in the individual resources reviewed, or she may identify gaps in the literature, which need to be addressed through further research. Finally, through the review of the literature, Annie has the opportunity to critically evaluate research methodologies. She may find that the methodologies used so far to study a phenomenon have not been adequate and may suggest the use of different methodologies or a combination.

What of literature review are there?

Literature reviews can take three main forms, which reflect the reviewers’ intentions and plans. First, a literature review can be done chronologically. In choosing to do so, researchers would need to locate all the relevant articles, place them in chronological order and present the fmdings from the articles according to time periods. In the social sciences, chronological reviews would be very helpful in the case of exploring what has been written, for example, about specific concepts, or to check whether the quality of life and experiences of patients change over time. Alternatively, a literature review could be conducted thematically. A thematic literature review refers to a review that focuses on a specific theme or phenomenon and explores what has been published about it. This is the most common type of literature review and provides researchers with substantial evidence about what is already known and how further research could be developed. The third type of literature review is that which focuses on the research methodologies employed. Here, researchers do not focus on the content but on the methodologies used in order to come up with conclusions about weaknesses in the methodologies and/or results and future prospects.

Interestingly, a literature review is not always confined to one form; it may combine the different types of review. For example, Pierret’s (2003) review (described further later in this chapter) is a combination of chronological and thematic, while other reviews may explore both the content and research methodologies. Based on these three main types, Annie decides to conduct a thematic review of the literature. Her theme is the experience of chronic illness, but an initial literature search indicated that her topic may be too broad. She now needs to think of ways to narrow it down and to have a clear plan of how she will effectively perform the review.

Based on a theoretical approach, Annie could do a meta-analysis, a meta-ethnography or a meta-study. Aveyard (2010) explained that a meta-analysis involves the combination of quantitative studies in order to fmd a statistical result, which may not be very obvious in the individual studies. A meta-ethnography refers to the combination of results from qualitative studies. Other scholars have named this a meta-synthesis (Sim and Madden, 2008). In meta-ethnographies, reviewers combine results from qualitative studies and also discuss the methodologies and theories employed. Annie chooses to carry out a meta-ethnography and to combine results from various qualitative studies, since she is focusing on how patients experience illness, which has been explored rigorously by qualitative research.

How should a literature review be carried out?

The question may seem simple to answer, but, in reality, carrying out a literature review is a challenging endeavour. Many people think that a literature review is a summary of a number of articles on a particular topic. However, a literature review is more complicated than that, as researchers should adopt a systematic approach and have a review schedule starting from the question they are examining and continuing on to searching for data, selecting resources based on well-defined inclusion and exclusion criteria, exhausting the literature, reading, summarising, critically appraising and, finally, discussing the way forward. The Cochrane Collaboration (2006) prepared a detailed guide as to how a systematic review should be carried out. The guide places emphasis on having at least two people performing the literature review independently in order to ensure quality and to minimise errors.

Let us explain the process of deciding on a specific research question before starting to search through the databases. Annie has to decide on a specific research question; otherwise, she may fmd herself in an endless process of reading and reviewing resources. In other words, the research question functions like a compass or a framework within which Annie can work. The research question, therefore, should be neither too broad nor too narrow. If it is very broad, Annie will not manage to have a focused review and may end up spending much more time than expected or scheduled. On the other hand, if the research question is too narrow, Annie may undertake a superficial review due to the scarcity of relevant resources.

Therefore, what is a good way to finalise a research question? Annie could take note of specific areas that derive from her general observations. These self-observed topics can work as guides at the beginning. Then, she can explore the literature to identify any similar topics that have been researched. By reading the relevant literature on similar topics, she can refine her research question and focus only on the most relevant resources. Though Annie initially had in mind a broad idea to explore (i.e. illness experience), she now thinks to focus on a specific condition and investigate how patients experience it. More specifically, she wants to focus on end-stage kidney disease and patients’ experiences of haemodialysis. However, she aims to end up with a topic that is neither too broad nor too narrow. For example, Annie may observe that older dialysis patients express more positive attitudes towards dialysis itself compared with their younger counterparts. This question is a bit narrow, because it focuses not only on a specific disease treatment but also on age groups and the way they express themselves towards medical technology. Reading the literature, she may realise that there are not enough studies to review and discuss relating to such an observation. Annie, however, may decide to make her topic a bit broader by answering the question of how patients with end-stage kidney disease experience haemodialysis. On these grounds, Annie could refine her research question to “What is the impact of haemodialysis on patients’ social life and identity?” (This topic is further analysed in Chapter 5, which discusses the main research findings in the social aspects of haemodialysis and how observation can help researchers understand patients in their natural environment.) Annie will explore what has been published on her research question and critically appraise the articles reviewed.

Having refined her research question, Annie now needs to select all the resources that are relevant to this specific question. However, how could Annie decide precisely what is relevant and what is not? Annie could have clearly defined inclusion and exclusion criteria in order to make sure that she only reviews the resources that are relevant to her research question. Annie then decides to set the following inclusion criteria. First, research studies should have been published in academic journals; second, articles should have been published during the last 10 years; and third, the research studies should focus on how haemodialysis has influenced patients’ social lives, family lives, employment and workplace, leisure activities, peers and the sense of self. Put differently, Annie is looking for studies that have explored how haemodialysis has influenced patients as social beings. Thus, Annie will exclude studies of peritoneal dialysis, patients’ cognitive and emotional processes, books, book reviews, reports and perspectives.

Discuss

• Now that she has fmalised her research question, what should Annie’s next steps be?

With a clear research question in mind, Annie now needs to start searching databases in order to identify potential articles for her review. There are many databases that Annie could search for articles, such as PubMed, OVID, Medline, PsycINFO, Sociological Abstracts and so forth. The databases used should relate to the general area of interest – social sciences and health. As Annie is focusing on the social aspects of haemodialysis, she could also explore more specialised journals, such as Social Science & Medicine, Journal of Health and Social Behaviour, Sociology of Health & Illness, Qualitative Health Research and Health, which are the main sociological journals that publish studies on health, illness and medicine.

Interestingly, Annie wonders how she should search. She could make a short list of topics based on her experiences so far and a few resources on how patients experience chronic illness. For instance, these topics could be identity, family relations, stigma, discrimination, biography and disruption, and could serve as keywords, which Annie would use when searching through databases or specialised journals. Annie may also combine these keywords with haemodialysis or end-stage kidney/renal disease/failure in order to focus the articles as closely as possible to her research question. When Annie finds all the potential research articles, she should then proceed with an initial screening by carefully reading both the titles and the abstracts in order to make the final sel...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Foreword
• Introduction
• 1 Literature review: Experiencing chronic illness
• 2 Social survey: Diabetes type I and type II
• 3 Qualitative interviews: Thalassaemia
• 4 Focus groups: Multiple sclerosis
• 5 Observation: Haemodialysis
• 6 Longitudinal study: Heart disease
• 7 Using the Internet: HIV/AIDS
• 8 Secondary data research: Mental illness
• 9 Combining quantitative and qualitative research methods: Alzheimer’s disease
• 10 Ethics in research: Breast cancer
• Index