Clinical research is vital to advance vision- and life-saving treatment of retinoblastoma. Understanding the human experience of childhood eye cancer can impact how we provide medical and supportive care.
Ethnography is a type of qualitative research that helps us learn more about people’s personal experiences by talking with, listening to, and observing them in their natural environment and everyday life.
Ethnographic studies can gain important insights into patient, family, and survivor experience, with great potential to enhance care worldwide.
What is the Difference Between Qualitative and Quantitative Research?
“Qualitative” and “quantitative” describe different scientific approaches to investigate a subject.
Quantitative research is highly structured, designed to prove or disprove a theory using facts, numbers and statistics. It:
- Has a narrow focus.
- Aims to test a pre-defined hypothesis.
- Relies on facts, numbers, and statistics.
- Uses surveys and questionnaires* with closed questions and specified responses such as YES/NO, checklist boxes and multiple choice; agreement scales such as Terrible, Poor, Average, Good, Excellent; and numbers such as age ranges or percentages.
Qualitative research is semi-structured and flexible, designed to answer a question and understand the human perspective, using direct observation. It:
- Is broad in focus
- Aims to develop a theory.
- Collects participant experiences, opinions, and views; and researcher observations.
- Uses surveys and questionnaires* with open questions that ask respondents to use their own words rather than choosing a set response.
- Facilitates and observes focus groups
- Uses structured interviews and unstructured conversations.
- Observes participants in their routines and activities of daily life.
A questionnaire is a set of questions posed to research participants. It is one part of a survey – the scientific process of gathering, studying, and interpreting data from all participants. A questionnaire collects data; a survey aims to understand the subject.
What is Ethnographic Research?
- Ethnographic research aims to engage with and understand people and real-world settings in a specific population. Researchers listen carefully to study participants, and observe their behaviour during daily routines and activities. They have structured and unstructured conversations, rather than relying solely on surveys, and questionnaires that use standardized responses.
The goal is to gather perspectives and experiences in the real-world context. Studying the collected data deepens understanding of what individuals and groups of people think and feel; how they act, react, and interact with the world around them; and the things that influence their experience.
Ethnography can assess how children, families, and medical professionals interact with and respond to current and changing practices in retinoblastoma care. The research can provide evidence to support more effective early diagnosis, medical care, and psychosocial support within specific environments.
Ethnographic research has roots in anthropology, and is now a common process in social science and holistic health care research. Ethnographic study of health systems is a rapidly growing area in medical anthropology.
How Does Ethnography Work?
Ethnographers use a range of methods to explore people’s lived experience. High quality studies combine at least three data collection methods, as one method alone is rarely reliable. The most common methods are:
- Direct observation.
- Participant diaries and journals.
- Structured interviews and semi-structured focus group discussions.
- Video and audio recordings, photography, and other documentary media.
- Participant self-expression creative content (e.g. writing, art, and music).
In observational research, the researcher may participate directly in the action (for example, as a facilitator, or as a member of the population being studied); or they may be an independent observer – present while the action takes place, with no interaction.
The researcher systematically witnesses, documents, describes, analyses, and interprets participant words and actions, their environment, interactions, and related events. The range of observational, conversational, and expressive art methods makes ethnography an ideal approach to study babies and very young children, non-verbal participants, and communities who are less confident with the written word and/or speak languages different from the researcher.
Analysis of the gathered data will vary depending on the collection methods, but the goal is always to produce a detailed report of participant experiences within a specific context. Good researchers look for patterns and recurring themes, and describe common experiences and their impacts on participants. They will then further assess their findings to connect various factors, and identify potential solutions to documented challenges. From here, they will build up a theory, and eventually test it with further research in the field.
Ethnography has a number of features that distinguish it from quantitative research. These include:
- Number of participants is usually small; may study only one person in depth.
- Explores social experience, rather than testing a specific hypothesis.
- Often explores a previously un-researched subject.
- Describes in depth the lived experience of a specific group of people. Reports are usually narrative, rather than statistical.
- Involves extensive interviews, conversations, observation, interactive sessions, and other varied data.
- Takes place in the participants’ everyday environments, rather than in a controlled environment such as a lab.
- Takes a holistic approach, rather than a narrow focus.
- Uses multiple data collection methods to strengthen validity.
- Uses a flexible, creative process that caters to participant needs, rather than a fixed methodology needed for statistical validity.
- Involves close relationship and trust between researchers and participants.
What Skills do Ethnographic Researchers Need?
Ethnographers need many specific skills to conduct quality research. They include:
- Deep knowledge and understanding of the study focus (e.g. medical condition, child development, human relationships, organizational structure).
- Ability to analyse, interpret and understand complex issues in the study population.
- Objectivity to draw valid and reliable conclusions without bias or prejudice.
- Familiarity with the settings in which research will take place.
- Social and interpersonal skills, awareness, sensitivity, and diplomacy to respectfully interact with participants and their environments.
- Familiarity with research ethics principles, and respect for them.
Is Ethnography Research in Healthcare Regulated?
Researchers must obtain informed consent from every participant. As with all clinical research, informed consent means the participant:
- Has received and reviewed all relevant information.
- Understands the medical condition and reasons for the study.
- Understands the potential benefits, risks, and impacts of the decision.
- Has had appropriate opportunity to ask questions.
- Makes the decision freely, without coercion.
- Agrees to take part in the research study.
Because ethnographic research often takes place over several years, with broadening areas of study, and evolving relationships between researcher and participant, study protocols should include a process to regularly review and reconfirm informed consent.
What Are the Pros and Cons of Ethnography Research?
Like other forms of research, ethnographic studies have various advantages and benefits, disadvantages and risks, and validating the findings is vital.
Advantages and Benefits
In the study of people and place, ethnography has many advantages, gathering rich data that can draw out findings hidden from quantitative research. The qualitative nature of ethnography allows researchers to:
- Witness how people act, react, and interact with their environment, and the factors that drive their behaviour.
- Use non-verbal observation methods to study diverse communities, including babies and toddlers.
- Reveal facets of human behaviour within context.
- Document diverse and complex human behaviour and experience.
- Detail intricate relationships within a group, and in different relevant settings.
- Understand why behaviours occur, as well as documenting their occurrence.
- Identify unexpected issues that may not have been considered before.
- Define follow-on research questions, and appropriate methods to address them.
- Test theories and new initiatives to assess their validity and value.
Disadvantages and Risks
Ethnography is uniquely placed to study people and advance understanding of human society, but it does have potential drawbacks that can impact study design, data collection, and interpretation of the findings. The main concerns are:
- Researchers must have specific training and a complex skill-set.
- The researcher’s personal views and beliefs may compromise objectivity and lead to biased findings (this is true with any form of research).
- Thorough participant-focused research can take months or years for both the participants and researchers. Generating and analysing data is time-consuming.
- Participant-focused research requires an uncommon level of intimacy and access to personal life that may disrupt both the research process, and the groups and environments being studied.
- Potential invasion of privacy and breach of confidentiality may discourage participation, reducing the pool of lived experience to learn from. This is a particular concern when the study population is already small (as in retinoblastoma).
- Building trust between researcher and participants is vital to facilitate open, honest involvement on both sides. This requires all parties to have time and patience, especially in the early stages of research.
- Because participants know they are being studied, they may not behave naturally or speak truthfully, potentially skewing the research findings.
- A certain volume of data is required to effectively draw conclusions. Too little may lead to false assumptions and misleading patterns of behaviour. Too much may be difficult to process and analyse effectively.
- Due to the human resources and time commitments involved, ethnographic research costs are much higher than conducting research with standard surveys.
During the ethical review application process, researchers are required to identify and describe potential benefits, risks, and mitigation efforts. They must also discuss these with participants in the process of obtaining informed consent.
How is Ethnography Research Validated?
The interactive and observational methods used to gather data are situation specific, and therefore not easy to replicate. Together with the possibility of researcher bias, these are significant threats to the validity of ethnographic research.
In the context of retinoblastoma research, another potential threat is the exclusion of blind and partially sighted community members when research design fails to consider accessibility. Since this population experiences the most prolonged treatment and significant lifelong impacts, such exclusion would seriously undermine any findings.
However, a skilled researcher is able to address these threats in various ways. For example developing a rigorous protocol in collaboration with community members, using multiple data collection methods that are accessible to all, and checking the findings and their interpretations in consultation with participants.
