Ethnography: A New Frontier in Retinoblastoma Research

Originally Published Monday August 15, 2022

Every child with retinoblastoma, parent, sibling, survivor, and medical professional has a story to tell of their journey through childhood eye cancer. Understanding our individual and collective experience empowers us to develop and deliver holistic care for all.  Rb survivor and WE C Hope USA Director, Clayonia Colbert-Dorsey discusses the growing field of ethnography research, and how it can positively impact our diverse global community.

Two women sit on either side of a little girl. They are all smiling.

Clayonia (right) and WE C Hope USA President Marissa Gonzalez, welcome young retinoblastoma survivor Lyra at our 2022 Midwest Family Weekend in Chicago.

Where My Journey Began

Learning, I believe, is a life-long process.  My evolution as a person continues – even more so as a retinoblastoma survivor.

Until I attended my first One Retinoblastoma World Conference in 2017, I had NEVER met a fellow survivor.  For me, that was an extremely lonely, isolating feeling that for many years, I carried as an emotional burden.

I am a sporadic retinoblastoma survivor and the only known affected person in my family.  My cancer diagnosis happened when my mother was well into her second pregnancy.  She began noticing a change in my eyes, and after persistent searching, a doctor familiar with retinoblastoma gave my parents the news.

Imagine trying to comprehend a cancer diagnosis for your child not yet three; while simultaneously being pregnant with another.  My parents wondered if the recommended treatments could wait until after the birth.  There was no time; the tumor was rapidly growing, and risked spreading to my brain.  A decision to wait would mean the birth of one child, but the death of another.  With a sense of loss, my parents made the difficult decision to allow removal of my dangerous cancer-filled eye.

My experience with eye cancer taught valuable life lessons.  I learned that difference breeds struggle – but struggle births hope.  Retinoblastoma caused me to persist in the face of fear and uncertainty.  It taught me the importance of paving the way for others, often venturing in waters uncharted.

As I continue to meet more Rb survivors, I am intrigued to learn about the journey of others.  We all have a story to tell.  The experience of each survivor, relative, family unit, and diagnosing and treating medical professional ties into a critical area of research and understanding.

Welcome to ethnography!

Ethnography: A Panel Discussion at One Retinoblastoma World 2021

At the 2021 One Retinoblastoma World conference, I co-led a panel discussion on this critical subject with Helen Dimaras, PhD – Global Eye Health and Retinoblastoma researcher at the University of Toronto.  Though neither of us are experts in the field of ethnographic studies, we both realize the need to develop deeper understanding of the implications this research method has for psychosocial and medical care, and cultural literacy within our community.

Our discussions centered on the role family plays in navigating the childhood cancer journey, the ways in which this may differ culturally, and how extended relational bonds can improve psychosocial outcomes for children with retinoblastoma, and survivors.

What is Ethnography?

Ethnography is a systematic form of qualitative research that helps us learn more about people’s personal experiences.  “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.

Qualitative research is semi-structured and flexible, designed to answer a question and understand the human perspective, using direct observation.

Ethnography aims to engage with and understand people and real-world settings in a specific population.  Researchers listen carefully to study participants, and observe their behavior during daily routines and activities.  They have structured and unstructured conversations, rather than relying solely on 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.

We have added a detailed explanation of ethnographic research to the Clinical Research section, including how it works; and benefits, risks, and validity.  You can read the expanded explanation by clicking on the tabs below.

Ethnography is a type of qualitative research that helps us learn more about people’s personal experiences.  “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.

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.

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.

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.

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.

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.

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A diverse group of people sit around a table talking. The table is filled with papers and classes of water, and more people are seen working together around tables in the background..

Parents, survivors and professionals work together at One Rb World 2017 in Washington D.C.

When and How Is Ethnography Used in Healthcare?

In recent years, and especially given the global pandemic, there is a growing effort to increase cultural competence in health care, to better engage with and care for patients from diverse backgrounds.  Within the United States and around the world, there is a push to start this important engagement during medical school training, with a realization that healthcare disparities do exist; and an awareness that social and cultural experience influences health care experience.

Ethnography is an evolving healthcare research method that can deepen understanding of the patient / caregiver experience, and support healthcare improvement skills among medical practitioners and decision-makers.  Among many goals in the medical care context, ethnography research can be used to understand:

Among many goals in the medical care context, ethnography research can be used to understand:

  • How and why culture, customs, beliefs, and views influence healthcare seeking behavior and decision-making.
  • Caregiver roles, challenges, burdens, and solutions in pediatric care.
  • Tools and systems that hinder and improve patient and family coping, health-care participation, self-advocacy, and wellbeing.
  • Tools, structures, and supports that influence professional morale and wellbeing.
  • Interaction between professionals, patients, and their families.
  • Trends in medical care, their influences and consequences.

During the 2021 One Rb World Ethnography session, Dr.  Dimaras challenged the global retinoblastoma community to consider ethnography as a new frontier in patient-focused research.  I believe this to be a shared goal for all of us – clinicians and researchers, survivors, and families – we are the combined framework of the global retinoblastoma family that strives for best patient and survivor care.

Jayne and Martha sit with a circle of parents, deep in conversation.

Child life specialists Jayne and Martha facilitate a parent group discussion at the 2013 Kenya National Rb Strategy meeting in Eldoret.

How Can Ethnography Research Enhance Retinoblastoma Care?

Among our diverse perspectives are:

  • Individuals and communities who consider cancer to be a social taboo.
  • Individuals and communities who do not use the word cancer or survivor, and may use alternative terms to discuss the condition and identify themselves.
  • Populations who do not exhibit “red eye” reflex in photographs, and may use different terms to describe healthy fundal reflex and the diagnostic features of leukocoria.
  • Individuals with sight loss who experience the world in non-visual terms.
  • Individuals and families who fear and experience racial and disability discrimination in the course of seeking and receiving medical care.
  • Individuals and communities who experience extreme fear of blindness and/or stigma around the loss of an eye that prevents or delays life-saving care.
  • Cultures where multi-generational, familial engagement is critical to early diagnosis and medical decision making.
  • Communities where religious beliefs may impact healthcare decision-making, particularly when enucleation is advised.
  • Communities where decisions rest with tribal elders, or among paternal lines; the decision-maker may or may not be the individual who accompanies the child to medical care.

We must delve deeper to explore challenges such as these that may impact the patient journey.  Potential impacts include:

  • More effective retinoblastoma awareness campaigns in diverse cultures.
  • Reduced lag time from first signs of retinoblastoma to referral and diagnosis.
  • Reduced stage of disease at diagnosis and chance of cure.
  • Improved communication between professionals, caregivers, and decision-makers.
  • Appropriate and consistent medical and psychosocial care.
  • Greater uptake and completion of appropriate treatment and follow-up.
  • Better coping and mental health for child patients, family, and survivors.
  • Relevant support provided by the family’s community.

Each patient’s journey is different; the unique nature of a retinoblastoma diagnosis and treatment pathway is critically important to their ongoing healing.  So we must meet families and survivors where they are, keeping in mind that multiple factors may be at play.

In Conclusion

Ethnography research is a good way to more fully explore and understand our community and the everyday experiences of life with and beyond retinoblastoma.  These research methods will gather insights that may not be recognized by quantitative research alone.  However, high quality ethnography research can be costly and time-consuming.  It is therefore vital to ensure the study effectively addresses a question relevant to the retinoblastoma community.  Designing methods and protocols that fully include blind and visually impaired participants must be a priority for researchers, and we strongly recommend working with the community to achieve this.

Ethnography is a new frontier with the power to further investigate the concerns and impacts within our community, acknowledging that our diverse lived experience of retinoblastoma can inform future care.  Who are we? Where are we? What is most meaningful to us? What would be most beneficial to us? What makes us feel safe and whole?

There is so much exploration required, and so much potential for ethnography to enhance retinoblastoma care, survival, and survivorship around the world.  My challenge to each one of us – let’s keep the dialogue going.

And to ethnography researchers who have the skills to drive this research forward, I urge you to learn about childhood eye cancer and become involved in the growing patient-led research work within our community.  Unbiased, informative studies will empower advocates and decision-makers to make informed changes that enhance care for everyone.  You can help us answer some of the most pressing questions, and shape holistic care for future generations.

When we know retinoblastoma and deeply understand the human experience of this cancer, we will have true wisdom and power to meet each child, family and survivor where they are, to provide best care for each person, and support for caring professionals fighting to save lives and sight.  We can get there together!

A woman supports a young female toddler standing on her lap as they look intently at one another.

Dr Katherine Paton, ocular oncologist at BC Children’s Hospital Vancouver, bonds with an 11 month old retinoblastoma fighter at One Rb World 2017 in Washington D.C.

About the Author

Clayonia Colbert-Dorsey is Manager, Continuing Education Provider Services, at the American Speech-Language-Hearing Association (ASHA) in Rockville, MD.  She holds degrees in Executive Secretarial Science (A.A.) and Organizational Management (B.Sc), and certificates in Values-Centered Leadership, and Workplace DEI (Diversity, Equity, and Inclusion).

An alumnus of the American Society of Association Executives’ (ASAE) Diversity Executive Leadership Program (DELP). Clayonia is a member of ASAE’s Professional Development Advisory Council, and the Honors/Awards Selection Committee, and past Chairperson of the National Capital Area Advisory Council.  She is a Trustee at White Rock Independent Methodist Episcopal Church and World Eye Cancer Hope.

Clayonia was born/raised in Maryland.  Diagnosed with retinoblastoma aged two years, she developed a tenacious spirit enriched by living beneath the “wings” of a historical icon.  She is the eldest grandchild of United States Congressional Gold Medal Recipient and Original Documented Tuskegee Airmen, William A. Colbert, Jr.  She believes in Ralph Waldo Emerson’s words: “to know that even one life has breathed easier because you have lived…this is to have succeeded.”

A black woman wearing glasses smiles at the camera. She is wearing a turquoise-blue top that contrasts beautifully with the marbled honey-brown background.
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