Exploring the needs of men with advanced prostate cancer
Prostate Cancer is now the most common cancer in men in the UK. The number of men living with advanced prostate cancer in the UK is increasing. Men with prostate cancer may live for longer with advanced disease.
The charity Prostate Cancer UK want all men with advanced prostate cancer, wherever they live in the UK, to have access to the right support and care at the right time. Preliminary research identified that some men may have unmet support needs. Therefore, Prostate Cancer UK commissioned Justice Studio to undertake qualitative research during March and April 2020, to gain further insight into the support needs and experiences of men with advanced cancer, to help inform the charity on how they can make sure that men receive the right support at the right time.
Preparations for this research were underway when news of the coronavirus’ spread to the UK were announced and lockdown measures were introduced.
Considering remote research
By the end of March the advice was understandably to suspend all face-to face research. Unfortunately, the in person focus groups we had planned were no longer an option.
Usefully before lockdown came into effect, we were already considering additional ways to reach all potential participants, including telephone interviews and online focus groups. We already knew that men with advanced prostate cancer may have decreased quality of life, psychological distress, pain and fatigue, which may have made in person research more challenging for them. Once lockdown started, we agreed with the charity to switch to fully remote methods.
Conducting online focus groups
Online focus groups have become a popular data collection methodology in bio-medical and health-related research. While their validity compared to traditional focus groups is yet to be fully understood, they have been well received, especially in health research, by participants who value the flexibility and efficiency of remote interviewing.
Considering these benefits, our team decided to use Zoom to conduct online focus groups. Zoom is a collaborative videoconferencing service for online meetings; it allows for cloud-based, secure video recording and real-time encryption.
Preparation is key
Reading existing research that explored Zoom and other online video technologies helped us prepare for the focus groups. This meant we took the following steps to maximise effectiveness:
- Assigning two facilitators to each group.
- Having a technical dry run.
- Reducing group size to suit the online medium (ideally less than 5 participants per group).
- Preparing participants by sending them a specially created Zoom user guide and advising them to perform a test call.
- Allowing extra time at the beginning of each group to check technical set-up.
- Providing participants with ways to get technical help during the focus groups, including exchanging phone numbers.
Some of these changes may increase preparation time and costs, however we feel that they were important in enabling us to plan ahead for technical difficulties and devise workarounds. Costs may be balanced by reduced travel expenses.
Considering digital exclusion
The participants in our study were mostly in their sixties and seventies. Some older people may be digitally excluded. Therefore, to ensure inclusivity we offered the choice of telephone interviews: over half of men recruited preferred this method.
However, recent statistics have shown that internet use in the 65 to 74 years age group increased from 52% in 2011 to 83% in 2019, closing the gap on younger age groups. Many of the participants did prefer Zoom. For example one man asked to switch from a telephone interview to a Zoom call.
Managing technical issues
At the start of each group, we briefed participants on our plan to manage technical difficulties. We told them we planned to continue, even if some experienced issues. At which point one of our two facilitators would support participants with technical problems, while the other could continue talking to the rest of the men.
Technical difficulties may not have a negative impact on the research experience. Interestingly,
nurses interviewed on Zoom reported that “the technical difficulties experienced often resulted in unintended benefits with regard to establishing rapport, through the protracted joint problem-solving process involved.”
Similarlyfor us, despite some problems with connectivity and a few participants briefly cutting in and out of the calls, at the end of the research men still expressed how much they had enjoyed the focus groups.
Researcher experience
There were many beneficial aspects to the video conference set-up. For example, we were able to send real-time messages to each other during the session, which enabled smooth group- facilitation.
The online focus groups meant we could more closely replicate the face to face experience. This included greater nuance from visual cues, details and some flexibility. For example, one participant brought his wife into a video call, which provided support for him and we felt greater emotionality to the interview.
We feel there are extra considerations in terms of ‘researcher presentation’ and gaining rapport. We noted greater cognitive fatigue post-focus groups compared to after telephone interviews. This may be due to:
- Differences in non-verbal behaviour and ‘performativity’ in doing online work - where exactly should you gaze in order to have ‘eye contact’ with the speaker?
- The impact of the audiovisual medium - there is an argument that the proximity of large faces on the screen in video conferencing may a trigger a flight or fight response.
Factoring in short breaks and adjusting screen set-up can help counteract these issues.
Participant experience
In similar contexts, researchers have reported that video conferencing was preferable for participants over and above in-person data collection.
In our study we did not explicitly ask participants about their experience of the software. However, when asked about their overall experience of the groups, what men overwhelmingly enjoyed was meeting each other – even if it was virtually.
In our groups we were able to connect men from different geographies and both rural and urban communities who may never have met before but had shared experiences.
Both our research and other multiple studies have shown the value of peer support for men with prostate cancer, with online and face to face modalities being similarly helpful.
Data richness
A study of online focus groups with students concluded that the slower and more distracted discussion in the groups produced less data overall. When comparing our group to our interview data we drew a similar conclusion.
However, a comparison study has shown that online focus groups show potential for producing data similar in richness to face to face focus groups.
We found this to be the case. For example, participants sometimes led their own lines of questioning amongst each other, chatting about healthy lifestyles and further treatment options, highlighting these as important areas of focus for Prostate Cancer UK.
Reaching out to your audience
In conclusion, although they present some challenges, we feel that online audiovisual focus groups can be an effective way to reach people from all walks of life. Even for elderly people who may not traditionally be seen as regular users of digital technology.
At Justice Studio we’re continuing to conduct remote research during the COVID-19 pandemic. We have launched an action research project to investigate the impact of Covid-19 measures (self-isolation, social distancing) on adults aged 70+ with underlying health conditions. In this instance we will be opening local phone numbers with voicemail boxes to capture phone-in responses.
We believe that it is crucial to think creatively and resourcefully when switching to virtual research methods.
Author Bios: Anneliese Levy is a Freelance Health Communications Specialist and Associate Consultant at Justice Studio. She has an MSc in Health Psychology, and over ten years-experience in qualitative research, with particular expertise and interest in research involving people living with cancer and user involvement in the third sector.
June Brawner is a Senior Researcher at Justice Studio. She holds a PhD in Anthropology and specialises in applied social research and creative methodologies. She is interested in political ecological approaches to health, considering the body as the nexus of social-environmental-political factors. She practices her commitment to social justice through research with marginalised, excluded or overlooked groups, and is passionate about evidence-based decision-making in her work with government and the third sector.
Diego Garcia Rodriquez is a Senior Researcher at Justice Studio. Diego holds a PhD (ABD) in Gender and Sexuality Studies from University College London. Diego has a background in qualitative research methodologies working mainly with LGBTIQ+ and HIV/AIDS+ individuals. He has conducted sensitive research in the UK and internationally mostly in Southeast Asia employing participatory methods, conducting focus groups, and undertaking qualitative interviews with vulnerable groups. He has published in peer-reviewed journals such as Gender, Place and Culture and TSQ.
Acknowledgements: This research was commissioned by Prostate Cancer UK and they have agreed to publication of this blog.
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