Qualitative research turns stories into science

How does hope affect families facing a childhood cancer diagnosis? Hope does not fit neatly under a microscope, nor is it easily categorized on a spreadsheet. To answer this question requires a different kind of study: qualitative research.

To study hope among Guatemalan families dealing with a pediatric cancer diagnosis, St. Jude researchers used audio-recorded semi-structured interviews with patient families, analyzing the content for themes. The insights garnered from the work, published in 2023 in Cancer Medicine, illustrated the importance of parental hope to pediatric oncology regardless of cultural setting, but emphasized that hope manifests differently depending on culture.

These results would not have been possible through a laboratory experiment; they required vulnerability from the families and cultural sensitivity and understanding from the researchers — something that could only be captured in a qualitative research study. 

“We turn stories into science,” said Dylan Graetz, MD, MPH, Culture and Communication program director within the St. Jude Department of Global Pediatric Medicine. “When done well, qualitative research is a rigorous scientific methodology. It needs all the things other science needs. It needs funding; it needs training; and we should be integrating it into our medical training.” 

The (human) nature of a question

All research starts with a question, and the nature of that question determines the methods investigators use. Quantitative research seeks to elucidate the “what” and the “how much” questions, emphasizing numerical data. Qualitative research seeks to characterize the “how” or “why” questions, using focus groups, interviews, observation, imagery, case studies and other techniques. These approaches work synergistically to provide dimensionality to a given topic and insights not otherwise garnered.

“Qualitative and quantitative research complement each other,” explained Julia Hanebrink, PhD, a clinical research scientist in the Department of Global Pediatric Medicine. “Qualitative research often helps explain the ‘why’ behind a quantitative finding, or it might identify some variables that should be measured in future quantitative studies.” 

That sentiment is echoed by Victor Santana, MD, Department of Global Pediatric Medicine, “Qualitative research can make quantitative research more whole and help you understand the human dimension. It can give you the bigger picture — the whole picture — of the research question and how the answers to that question help you understand what’s happening with people.” 

Building trust within communities

Central to qualitative research is responding appropriately to and designing studies for specific cultural contexts. “Cultural nuances are so important in the data collection process,” explained Shayla Lawrence, MPH, the Culture and Communication program coordinator. “We want to prioritize having folks who speak the language — who understand the culture — be a part of the research process from the very beginning.” 

A study design that works well in the United States may be culturally inappropriate elsewhere. For example, in a JCO Global Oncology publication, Graetz, Santana and their colleagues conducted semi-structured interviews to explore how stigma impacts children with cancer in Guatemala, Jordan and Zimbabwe using a modified version of the Health Stigma and Discrimination Framework. They translated the interview guide from English to Spanish, Arabic and Shona, making iterative revisions throughout the study to accommodate linguistic and cultural considerations. These adapted measures for each cultural context allowed the team to gather relevant data and develop insights to expand upon in further studies.

In addition to providing new insights, such adapted data collection techniques demonstrate to study participants that researchers value their unique perspectives and want to understand what is important to them and their communities. Careful attention to community values is crucial to building trust, which is essential to driving qualitative research participation. 

“Trust can be a barrier — it takes patience, understanding and effort to build a rapport to be able to talk to people about sensitive subjects — but it is one of the most important parts of the research process,” explained Hanebrink. 

Unlike a survey, vulnerability is needed in interviews and focus groups, which may make participants uncomfortable. “People are sometimes OK with filling out a survey, but they’re not OK expressing an opinion verbally — either one-on-one or in a group. So, we must be conscious about that,” Santana emphasized. 

The reasons for this nervousness vary. People may worry about anonymity within the study or how their responses may impact their treatment. Transparency about how the data is used becomes an imperative.

“We spend a lot of time building relationships and being transparent about how data will be used,” said Hanebrink. “It can take multiple conversations. You have to be mindful about the positionality of who’s asking the questions; our own identities and experiences influence how we collect data and interact with participants.” 

Time proves to be a limiting factor

Another key element to building trust with potential research participants is respecting their time. Families dealing with a childhood cancer diagnosis may feel overwhelmed as they navigate treatment. St. Jude researchers are acutely aware of the risk of overburdening families with additional commitments.

“Time is precious,” said Gia Ferrara, MSGH, a senior clinical research associate in the Department of Global Pediatric Medicine. “Families already have so many appointments to attend, things to keep track of and people to talk to. So, even with the best intentions, another person wanting to talk to them might be a barrier to participation. It’s important to consider how much time you’re asking of them and when it is appropriate.” 

Time affects more than just the research participants; it impacts the design of a qualitative research study itself. Conducting interviews, transcribing what was said, anonymizing information, coding responses and analyzing the themes requires a level of finesse not found in automation. This process is both time and human resource–intensive. 

“You can’t just put qualitative work into software,” said Graetz. “You have to have somebody who can analyze it, and you need to think about whether you’re planning on doing in-depth analysis versus some sort of rapid analysis.” 

Sharing a story

As with any research discipline, there are complicated factors to consider when designing or participating in a qualitative research study. Still, participants see the value. Despite the often-sensitive nature of such topics, patients, family members and health care providers are eager to share their unique perspectives and impact future research. 

Reflecting on what motivates people to participate in qualitative research studies, Graetz said, “There is a therapeutic component, sometimes, to participating in qualitative research. We often hear participants — whether they’re health care providers, patients or family members — say, ‘Thank you for listening. Thank you for taking the time to ask my opinion. Thank you for sharing my story.’”