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Appendix 2 – Glossary

2019: Overcoming ethical challenges affecting the involvement of people with dementia in research

The following list contains a brief explanation about some of the key terms used in this discussion paper.

Diversity

Diversity refers to the recognition, acceptance and respect of individual differences (e.g. in relation to gender, age, political beliefs, socio-economic status, appearance and dress-style, abilities and disabilities, sexual orientation, religious beliefs, language and so on) which are what make people unique. It amounts to more than a toleration of difference. It is about moving beyond a narrow focus on difference and from reducing people to a single defining characteristic. It is about embracing and celebrating the richness of individual and group differences.

Ethics/ethical

Ethics is a branch of philosophy which focuses on issues related to what is ‘right’ and ‘wrong’, ‘good’ and ‘bad’. Over the centuries, philosophers, as well as researchers, healthcare professionals, politicians and members of the general public, to name but a few, have debated such issues. Guidelines, principles, values and theories abound. Determining what is ethically sound and what is not is a complex issue and a dynamic process. A clear overview of different ethical perspectives of relevance to the ethics of research can be found in Chapter 1 of the European Textbook on Ethics in Research (European Commission 2010).

Ethnicity

References to ‘ethnicity’ (or ‘ethnic’) are generally associated with the identification with a group of people or a community on the basis of a perceived shared culture. According to Smedley and Smedley (2005), “Ethnicity refers to clusters of people who have common culture traits that they distinguish from those of other people. People who share a common language, geographic locale or place of origin, religion, sense of history, traditions, values, beliefs, food habits, and so forth, are perceived, and view themselves as constituting an ethnic group” (2005, p.17).

Ethnic groups are not permanent, inflexible entities but rather open to change, with the possibility of people moving in and out of them. People define themselves as belonging to a particular ethnic group and are also identified by others as belonging to that group (as opposed to another group) (Barth 1998). They develop together the criteria for group membership, emphasising similarities between members of the group which are significant and ignoring those which are not (also with regard to intra-group differences).

An important aspect of ethnicity is that it is not something that is biologically determined, fixed or linked to nationality or place of birth, even though members of a group might share a common ancestral geographical origin and a tradition of common descent.

Intellectual disability

Intellectual disability is a disability that is characterised by significant limitations in both intellectual functioning (e.g. learning, problem solving and judgement) and in adaptive functioning (e.g. activities of daily life such as communication and independent living). It is not a disease and the disability starts before the age of 18. Down’s syndrome is the most common identifiable cause. People with intellectual disability may still be able to learn new things and cope with various aspects of daily life but they may need more time, find it more difficult and need support.

Intersectionality

Intersectionality is about exploring the relationships between socio-cultural categories and identities. It emphasises multiple positioning, looks at differences between and within groups, at power relations between people and how the creation of the ‘Other’ serves to oppress, discriminate against and marginalise some groups of people, placing the blame for any societal problems they may experience on them personally whilst failing to acknowledge structural discrimination.

Paradigm

Kuhn, who coined the term ‘paradigm’, described it as a “constellation of beliefs, values, techniques and so on shared by members of a given community” (Kuhn 1970, p.175). In the context of research, paradigms are world views or belief systems which influence the way that researchers approach and carry out their studies (Guba and Lincoln 1994).

—The positivist paradigm emerged in the 19th century as a rejection of metaphysics. The validity of scientific theories was considered to rest on observable and empirical analytical facts. The focus was on what could be observed and measured with the ultimate aim of being able to predict and control it. Postpositivism was a reaction against the perceived limitations of the positivist paradigm and the realisation that the positivist paradigm was not suited to the complexities of much social science research (e.g. including research into emotions and psychological factors which cannot be observed).It involves a critique of the positivist assumption that there is an absolute truth which with the right approach can be discovered.

—The social constructivist (or interpretivist) paradigm emphasises the social construction of reality based on shared and multiple meanings. This emphasises the social construction of reality, the importance of meaning, the impossibility of obtaining value free knowledge, an emphasis on inductive logic and an awareness that methods of inquiry used in the natural sciences are not wholly appropriate for the study of social phenomena because the social world is mediated through meanings and human agency (Tashakkori and Teddlie 1998). Qualitative research methods are generally associated with the interpretivist paradigm.

—The paradigm of pragmatism favours the adoption of whichever methods, techniques or procedures are most relevant to providing the best understanding of the research problem and is based on the premise that no single method is perfect. By combining different methods, it is believed that certain weaknesses in one method may be cancelled out or balanced by strengths in the other and vice versa (Creswell 2009). Adopting a pragmatic approach involves inductive and deductive reasoning, as well as mixing qualitative and quantitative methods where appropriate (Tashakkori and Teddlie 1998, Creswell 2009).

Positionality

Posititionality is about where researchers stand in relation to the people with and on whom they are conducting research. A person’s position in society, including their cultural background as well as a range of factors and characteristics which shape and reflect their identities, affects the way they make sense of the world. In the context of research, this may have an impact on how participants are treated, on decision making an on the conclusions drawn.

Public Involvement

The term Public Involvement (PI) is usually understood as meaning carrying out research and developing policies with or by members of the public and patients rather than on or for them. People who contribute towards PI are not considered as research participants. Rather, they are advisors or in some cases co-researchers who help improve research by sharing their personal experience and perspectives with researchers. Various levels of involvement are possible. All contributions are valuable.

Qualitative research

Qualitative research typically involves collecting, analysing and attempting to uncover the deeper meaning, significance and uniqueness of human behaviour and experience, including contradictions, ambiguities, behaviours, perspectives and emotions. The overall aim is to gain an in-depth understanding of people’s experience and not to obtain information which can be generalised to the larger population. Possible ambiguities and contradictions in the data are considered as a reflection of social reality rather than a problem (Denscombe 2010). Researchers are often guided by a theoretical lens, a kind of overarching theory which provides a framework for their investigation.

The approach to data collection and analysis is methodical but allows for greater flexibility than in quantitative research. Data is collected by means of observation and interaction with participants (e.g. interviews, focus group discussions, immersion in the culture) or the review of documents. This is often an iterative process involving the methodical and simultaneous collection and analysis of data. With grounded theory, for example, researchers seek and determine hidden social and collective patterns and constructions from the data, avoiding theoretical preconceptions and adjusting research questions, if appropriate, as the theory starts to emerge.

Quantitative research

Quantitative research involves the systematic investigation of phenomena by means of the statistical analysis of numerical data in order to test hypotheses. The aim of such analysis (with the exception of descriptive statistics) is to determine whether it can be concluded that the findings were not due to chance alone. Researchers seeks patterns, trends, correlations and causal relationships between different variables. The focus is on whether and to what extent something is the case. Quantitative researchers use several different approaches.

Correlational research, for example, looks at non-causal relationships between variables using statistical analyses and is therefore mainly observational. With quasi-experimental approaches, researchers look for possible causal relationships between variables but without manipulating the variables. Cross-sectional studies compare different groups at a single point in time (almost like a snapshot of a particular variable), whereas longitudinal studies observe the same groups of people over an extended period of time which makes it possible to detect changes at the level of the individual and the group. The experimental approach seeks to establish a causal relationship between a group of variables. It is often considered as being the most rigorous approach and considered a kind of gold standard of (quantitative) scientific research. A classic example of an experimental design would be a randomised controlled trial. As suggested by Trochim (2006), if conducted properly, this design is the strongest with regard to internal validity.

Race

Race is a concept which categorises groups of people on the basis of biological differences (often including visible physical traits or characteristics), which it is claimed have been passed down from generation to generation (i.e. genetic differences). The concept of race is often associated with the belief that some races are inferior and even ‘less human’ than others, with devastating consequences for certain groups of people (e.g. discrimination, colonisation, slavery and genocide). According to Smedley and Smedley (2005), two main beliefs about race have persisted since the 20th century, namely race as consisting solely of human biogenetic variation (prevalent amongst scientists) and race consisting of a combination of physical and behavioural differences (a folk perception, also prevalent in some policies and laws). The concept of race has been challenged with opponents of this concept pointing out that so-called racial groups are not genetically discrete, measurable or scientifically meaningful and that there is more genetic diversity within ‘races’ than between them (Smedley and Smedley 2005, Mersha and Abebe 2015).

There may sometimes be valid reasons in the context of research for being aware of genetic differences between groups of people but the concept of ‘race’ (based on observed differences in biology, physical appearance and behaviour) is not useful in establishing such differences. Mersha and Abebe (2015) argue in favour of using ‘ancestry informative markers’ (AIMs). These are a “set of genetic variations for a particular DNA sequence that appear in different frequencies in populations from different regions of the world” (2015, p.4).

Reasonable accommodation

Reasonable accommodation is a term used in the United Nations Declaration of the Rights of Persons with Disabilities to describe reasonable adjustments or adaptations that should be made to ensure that people have the same opportunities (e.g. to use services, access buildings and play a role in society).

Reflexivity

It is not possible to rule out researcher reactivity (i.e. the possibility that the researcher might influence the research situation or the participants) or achieve objectivity (in the sense of freedom from bias) completely. It is therefore important to reflect on this and attempt to gain insight into it (a process which Kvale and Brinkmann call “reflexive objectivity”) thereby enhancing sensitivity. This involves reflecting on one’s own background, history and other relevant factors as well as regularly writing memos of one’s thoughts and observations about the data collection and analysis.

Research

Research consists of a systematic, organised inquiry to find answers to worthwhile questions, using predefined methods or procedures which are clearly documented. The answers to such questions should contribute towards a body of knowledge or theory and it should be possible for other people to understand exactly what researchers did to arrive at their conclusions and any limitations there may have been to the study.

Sampling

Sampling strategies in quantitative research fall into two categories, namely probabilistic sampling and non-probabilistic sampling. The term probabilistic refers to the probability that everyone in the population has an equal chance of ending up in the study. Whilst non-probabilistic sampling is considered as permitting the lowest level of generalisability, its advantages in terms of reaching certain populations may sometimes need to be considered.

Qualitative research usually involves relatively small numbers of participants and contrary to the focus of much of quantitative research on random sampling, samples are often purposively selected. This is in keeping with one of the fundamental aims of qualitative research which is to gain an in-depth understanding of people’s experience, for which diversity is necessary. Purposive sampling involves the selection of potential participants based on knowledge about the population and research topic, and on the research question. The number of people to be included in the sample is often not set in advance. Sampling evolves over the course of the study.

Note

Readers might also find the Jargon Buster document produced by INVOLVE (2007) helpful. It contains definitions of several terms which are often used in the context of Public Involvement: https://www.invo.org.uk/wp-content/ uploads/2011/12/PIP44jargonbuster.pdf

 

 
 

Last Updated: Wednesday 11 November 2020

 

 
 

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