Abstract
To support meaningful and productive engagement in cancer research, we provide practical guidance for preparing for and conducting focus groups and interviews with community members. We provide 11 recommendations in two printable resources: (a) a checklist for preparing for focus groups and interviews with community members, and (b) a list of practical strategies to use when conducting the focus groups and interviews. These recommendations are based on our experience facilitating 15 focus groups and 20 interviews with 52 community members to codesign the study materials for a population-wide qualitative survey for understanding the needs and experiences of adults affected by cancer in Queensland, Australia. The checklist includes six recommendations: (1) define and document recruitment procedures, (2) use diverse recruitment methods to recruit a diverse sample, (3) implement multiple strategies to prevent and detect fraudulent participant sign-ups, (4) offer flexible options for research participation, (5) develop and pilot visual session materials, and (6) nominate lead and support facilitators (focus groups only). Practical strategies include five recommendations with examples for how to implement these in practice: (1) allow time to get started, (2) invite focused participation, (3) keep track of time, (4) facilitate productive and insightful conversations, and (5) debrief after sessions for continuous quality improvement. These resources can be used by students, researchers, and health care professionals conducting focus groups and interviews with community members to optimize the consumer’s experience of participation in cancer research. The recommendations presented may also be applicable in health research more broadly.
Keywords
In public health research, qualitative methods such as focus groups and interviews provide a valuable forum for researchers to engage with community members to gather rich insights into their views and experiences (Renjith et al., 2021). Currently, there is detailed methodological guidance available for how to analyze data collected in focus groups and interviews (Braun & Clarke, 2022; Vears & Gillam, 2022). However, there is little up-to-date, practical guidance on how to recruit, prepare for, and conduct productive focus groups and interviews that optimize the consumer’s experience of research participation. In the context of cancer research, consideration of the consumer experience is important because people often share personal information about their experience of cancer.
In this article, we provide 11 practical recommendations in two printable resources (see Figures 1 and 2) for students, researchers, and health care professionals preparing for and conducting focus groups and interviews with community members for cancer research. Recommendations are intended for both focus groups and interviews unless otherwise stated. By sharing these recommendations, we hope to support consumer participation in cancer research that is meaningful and productive for all.
Checklist for Preparing for Focus Groups and Interviews with Community Members for Cancer Research
Practical Strategies for Conducting Focus Groups and Interviews with Community Members for Cancer Research
Context and Setting
These recommendations are based on our learnings from facilitating 15 focus groups and 20 interviews to codesign and test materials for a population-wide cancer survivorship study. These materials included a study flyer, an invitation letter, and a single, open-ended survey question to capture qualitative information on the needs and experiences of people affected by cancer. Detailed methods for the codesign study have been reported elsewhere (Ayre et al., 2024; Johnston et al., 2024).
A diverse sample of 52 English-speaking community members from Queensland, Australia, aged 18 years or older, participated across the focus groups and interviews. 5% to 7% identified as Aboriginal and/or Torres Strait Islander, 9% to 15% used English as a second language, 20% were born overseas, and 27% to 30% lived in a rural area. Participants were recruited via an online participant information and consent form distributed by Cancer Council Queensland and research team members. Focus groups were facilitated by two researchers as online, in-person, or hybrid sessions, and online interviews were facilitated by one researcher using Microsoft Teams.
Preparing for Focus Groups and Interviews With Community Members for Cancer Research
Recommendation 1: Define and Document Recruitment Procedures
Defining and documenting recruitment procedures ensures the recruitment process is timely and consistent for all participants. Prior to recruitment, we created a protocol that outlines each step (e.g., screen online consent forms for eligibility, conduct initial phone call, and send confirmation email). We also created email templates for communicating with potential participants at key stages (e.g., acknowledging expression of interest and scheduling study participation) and documented phone conversations in a spreadsheet.
Recommendation 2: Use Diverse Methods to Recruit a Diverse Sample
Recruiting a diverse sample enables a range of perspectives to be represented in the data collected. To recruit a diverse sample, we used the following methods:
We identified population subgroups that were important to include based on our research aims and scope (e.g., people living in a rural area). Next, we created benchmarks for participant numbers in each priority subgroup based on population averages (e.g., 28% live in a rural area). To monitor sample representativeness during recruitment, we collected key demographic information at consent (e.g., residential postcode). We used this information to monitor the diversity of the sample recruited and to prioritize subgroups as needed.
We used multiple and diverse recruitment channels, such as social media platforms, printed flyers, networks of community support organizations, health consumer or patient newsletters, and study participants’ networks. When choosing recruitment channels, we considered whether certain population subgroups are more accessible through particular channels. For example, we advertised our study through WeChat given that the Australian Chinese community report accessing WeChat more than other social media platforms (Yu & Sun, 2021).
Finally, we appealed to priority subgroups through tailored recruitment materials with images of people who represented various ages, ethnicities, and genders in various settings.
Recommendation 3: Implement Multiple Strategies to Prevent and Detect Fraudulent Participant Sign-ups
Online recruitment can be effective for reaching many people quickly. However, online forms are vulnerable to fraudulent responses, such as survey bots (i.e., automated computer software designed to complete online surveys) (Goodrich et al., 2023). Given the risk of fraudulent responses in online surveys is increasing and evolving (Goodrich et al., 2023), we implemented multiple strategies to prevent and detect fraudulent responses in our online participant information and consent form. We found collecting IP addresses and monitoring for duplicates was an effective strategy. Johnson et al. (2024) provides an extensive list of strategies to deter, prevent, detect, and remove fraudulent online survey responses.
Recommendation 4: Offer Flexible Options for Research Participation
To provide equitable opportunity for participation in cancer research, we offered both in-person, online, and hybrid sessions. Providing online sessions eliminates barriers associated with geographical location, travel time, and transportation access (Dos Santos Marques et al., 2021). This is particularly relevant for people affected by cancer because the time required for cancer treatment or caring responsibilities can be a barrier to research participation (Heckel et al., 2018). Online participation may also be a safer option for people who are immunocompromised due to cancer treatment. Equally, in-person sessions should be available for those who prefer in-person participation or are unable to participate online. We also offered sessions at different times and days of the week, including outside of standard business hours, to enable participation from people with commitments that may otherwise impede their involvement.
Recommendation 5: Develop and Pilot Visual Session Materials
Using visual session materials can facilitate participation in session activities. To develop our materials, we created a session running sheet outlining the structure of the session. Our session running sheet included the session script, activity order and timing, standardized discussion prompts and questions, key reminders to communicate to participants (e.g., assurance of confidentiality), and any equipment required. We also created a visual presentation to accompany the script and support the communication of key messages and session activities to participants. We tested the running sheet and presentation slides in a pilot session with other research team members and refined materials as needed, including updating approximate timings for each activity on the running sheet.
Recommendation 6: Nominate Lead and Support Facilitators (Focus Groups only)
To optimize consumer participation and experience, we recommend having a lead and support facilitator for each session, similar to Dos Santos Marques et al. (2021). In our study, the lead facilitator focused on running the session (e.g., presenting session aims, explaining activities, and facilitating productive conversations). The support facilitator focused on supporting the lead facilitator and facilitating participation from focus group members through resolving technical issues, contacting late participants, monitoring the online chat, timekeeping, and responding to participant input. This division of tasks was documented in the session running sheet and enabled the lead facilitator to effectively manage group dynamics and activities while the support facilitator addressed any barriers to participation. Due to the requirements of the role, the lead facilitator should have previous experience in conducting qualitative research (e.g., as a support facilitator) and skills in managing group dynamics and interviewing (e.g., from their professional role).
Conducting Focus Groups and Interviews With Community Members for Cancer Research
Recommendation 1: Allow Time to Get Started
Allow 5 to 10 minutes at the start of each session to resolve technical or practical issues, complete administrative tasks, and orientate late participants. In our focus groups, the lead facilitator used this time to welcome participants and ask them to complete a short demographics survey. Meanwhile, the support facilitator monitored emails for last-minute cancelations and called participants who had not yet joined the session or arrived at the venue. Often, late participants were experiencing a technical issue (if online) or needed navigational support (if in-person) that could be resolved over the phone. Alternatively if circumstances had changed, participants could opt to reschedule their participation to a later date. For hybrid focus groups, these sessions often required more time to get started due to the need to provide support both online and in-person to ensure everyone was supported to participate in the session (e.g., visibility of slides and clarity of audio both in the room and online).
Recommendation 2: Invite Focused Participation
In our experience, most participants were willing to share detailed information regarding their personal experience of cancer in focus groups and interviews. However, occasionally, these conversations were not relevant to the session activity or potentially uncomfortable for other participants. Given sessions are often time-limited, we recommend the following strategies to invite focused participation:
Set clear expectations for session participation at the start.
Where necessary, refocus participants by addressing them directly.
In our focus groups, the original opening instructions included, “Please contribute as much as you would like to the conversation.” After several sessions where participants had digressed into detailed personal stories not relevant to the discussion topic, we changed our opening instruction to: “This session is expected to take up to two hours. Please aim to stay on task as we want to make sure we have enough time to hear from everyone and complete all activities.” We found this updated instruction encouraged participants to monitor the relevancy of their own (and each other’s) contributions to the discussion.
To refocus participants who digressed from the session topic, we used the following sequence: (a) address the participant by name, (b) acknowledge and thank them for sharing their perspective or experience by briefly summarizing what they said, and (c) redirect the discussion back to the session activity by reminding them of the discussion topic. This approach was effective in refocusing participants without dismissing their contribution. Strategies for managing participants that are more vocal than others in focus groups are discussed below in Recommendation 4.
Recommendation 3: Keep Track of Time
Monitoring time during focus groups and interviews ensures participants have adequate opportunity to complete each activity and provide their input. As discussed earlier, we documented the estimated time for each activity in the running sheet after piloting the session. This information guided facilitators toward timely session completion, while allowing for different levels of participant engagement in each session. For example, if an activity was completed earlier than anticipated, more time was allocated to subsequent activities. Alternatively, if an activity exceeded the time allocated in a focus group, the support facilitator notified the lead facilitator who began summarizing the discussion and introducing the next activity. In our experience, it was helpful to share approximate timings with participants (e.g., 5 minutes for group discussion) to enable them to self-manage their input.
Recommendation 4: Facilitate Productive and Insightful Conversations (Focus Groups Only)
To collect rich data from focus groups, it is vital that facilitators can promote productive and insightful conversations. We found the following strategies were helpful:
Encourage participants to talk directly to each other, rather than addressing comments to facilitators.
Encourage balanced participation by asking each participant to share their ideas.
Actively use presentation slides to visually acknowledge and respond to participants’ input.
The first strategy allows focus group participants to take ownership of the discussion and to validate or challenge one another, contributing richer insights during the sessions. For example, in our study, a participant suggested a survey question idea with the word “fighting.” Another participant challenged this by sharing their experience that “fighting” can be triggering for people diagnosed with cancer. This challenge was met with acceptance and gratitude by the first participant, highlighting the value of these conversations for research purposes and participants themselves.
The lead facilitator implemented the second strategy by instructing participants to share their question ideas with the group following a “round-robin” process. This gave all participants an opportunity to contribute their ideas to the discussion without interruption from others and prevent the discussion from being monopolized by more vocal participants. To further support balanced participation, it may be helpful to also use the second strategy in Recommendation 2 to redirect the discussion to participants that had not yet had an opportunity to contribute.
To implement the third strategy, we typed participants’ ideas for survey questions verbatim onto the presentation slides that all participants were viewing. This demonstrated to participants that their ideas were heard and valued, encouraging continued engagement in the group discussion. In one session, a caregiver of a child with cancer indicated that the phrase “all Queenslanders” on our presentation slides was triggering, considering our study only included adult cancer patients and caregivers. The support facilitator promptly removed “all” from the slides, demonstrating the participants’ input was acknowledged and valued.
Recommendation 5: Debrief After Sessions for Continuous Quality Improvement
To provide an opportunity for continuous quality improvement, our facilitators debriefed after each focus group or interview with co-facilitators or the broader research team. In our debriefing sessions, we asked, “What worked well?” and “What could be improved?.” These sessions helped identify and resolve challenges encountered during the sessions. For instance, the changes we implemented to the opening instructions of our focus groups (see Recommendation 2) arose from a debriefing session. In addition to quality improvement, debriefing sessions provided social and emotional support for the researchers facilitating the sessions. At times, this support was helpful for processing the personal stories that people shared about their experience of cancer.
Summary
This article provides 11 practical recommendations in two printable resources for preparing and conducting focus groups and interviews with community members for cancer research. These resources can be used by students, researchers, and health care professionals conducting consumer consultations for cancer research, or health research more broadly. By sharing these recommendations and resources, we hope to support community engagement in research that is meaningful and productive for all.
