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• To learn more about virtually interviewing children and young people
• To understand the ethical implications of using virtual interviewing to collect data
• To appreciate future directions and further research required to establish evidence-based research practices with children and young people
Background Societal use of digital technology rapidly increased during the COVID-19 pandemic. Face-to-face services converted to online provision where possible. This affected many nurse researchers.
Aim To explore conducting research interviews online with children and young people (CYP) about sensitive topics.
Discussion This article considers digital inclusion, as well as ethical issues surrounding safety, support and consent, along with choosing tools for collecting data. It also presents a discussion of physical proximity in qualitative interviews with this population and its role in data quality. The authors investigate benefits in the context of researchers’ personal experiences. They acknowledge the disadvantages of conducting interviews online and discuss ways to mitigate these.
Conclusion The advantages for researchers include cost-effectiveness, time-efficiency and greater geographical reach of participants. However, CYP’s perspectives are unknown and the specific ethical issues of using this method with CYP need careful consideration.
Implications for practice More research is needed to examine virtual interviews from the perspectives of CYP as participants. Virtual acquisition of consent and assent should be investigated to standardise good research practices.
Nurse Researcher. doi: 10.7748/nr.2022.e1857
Peer reviewThis article has been subject to external double-blind peer review and checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Bichard E, McKeever S, Wray J et al (2022) Research behind a webcam: an exploration of virtual interviewing with children and young people. Nurse Researcher. doi: 10.7748/nr.2022.e1857
Published online: 05 December 2022
Globally, the COVID-19 pandemic created an urgent need for society to navigate digital technology (Drouin et al 2020). Face-to-face contact has been discouraged, in an era of physical distancing, national and regional lockdowns, and social isolation for many (Atalan 2020, Lancet Public Health 2020). COVID-19’s rapidly changing viral spread means there have also been frequent changes to advice given in relation to public safety, which has made it challenging to undertake research (Clifford et al 2021).
Digital platforms provided researchers with an opportunity to continue collecting data (Hensen et al 2021). However, they needed to adapt quickly, and consider the ethical challenges, costs and the effects on research of using these platforms (Halliday et al 2021, Hensen et al 2021).
This paper discusses some of the issues in collecting data online, in the context a doctoral student (the first author)’s experience of using the Zoom video conferencing software to undertake interviews. The heArt sibLings imPact Study (ALPS) involved interviewing healthy children and young people (CYP) aged 8 to 17 years old whose siblings have congenital heart disease (CHD). Definitions of ‘children’ and ‘young people’ vary, but we have followed United Nations (2022) guidance and will use the terms ‘children’ for anyone aged 8 to 14 years old and ‘young people’ for 15-17 year olds.
• Virtual interviewing is a cost-effective method of collecting data
• The additional ethical considerations when video interviewing children and young people require careful planning
• More research is required to explore good research practice concerning obtaining virtual consent and assent from CYP and their families
• More research is required to explore CYP’s experiences of virtual data collection
Worldwide, the use of technology by CYP and families increased during the COVID-19 pandemic (Drouin et al 2020, Ting et al 2020). Many countries, including the UK, used technology to communicate public health information (Whitelaw et al 2020). Health, education and business also migrated services online (Department for Education 2020). This change to a virtual world resulted in families needing to possess a variety of skills, competencies and resources related to the increased use of technology (Iivari et al 2020).
Digital inclusion aims to promote participation, empowerment and open access of digital technologies to society (Iivari et al 2020). However, not everyone can access and use or acquire skills associated with the safe and effective use of digital technologies (Mariën and Prodnik 2014). Not having access to a digital device or education related to digital technology can increase social and health inequalities (Borg et al 2019). Social, economic and cultural influences, values and beliefs all affect the capacity to be included (Vial 2019). The families who commonly engage with health and well-being services are the ones who benefit the most from services that are offered online (European Commission 2010). This is also likely to be true for research participation, but it is important to avoid excluding participants when using digital technology to collect data (Iivari et al 2018).
Research participants and their parents may be concerned that online interviews require them to have advanced skills with technology (Lamberti et al 2021). Researchers need to acknowledge that participants may face difficulties using technology and ensure they have the skills to mitigate these difficulties and troubleshoot any problems (Rowe et al 2014, Weller 2017).
Internet access is an important factor in achieving inclusion in research and more widely (Hokke et al 2018). In 2019, 700,000 11-18 year olds in the UK reported having no access to the internet at home via a tablet, laptop or desktop, but may have access on a smartphone; a further 60,000 CYP reported having no internet access at all in their home (Office for National Statistics 2019). CYP who could not access the internet at home normally were able to do so at school, local libraries or children’s centres, but could not during the pandemic as these settings were closed (Beaunoyer et al 2020). However, the attainability of adequate internet access at home may have improved since then, as many more internet-enabled devices are available because more parents now work from home (Kassab and Darabkh 2020).
The internet has been used successfully in many studies involving CYP and families (Hokke et al 2018). Some researchers were concerned about possibly introducing bias because of the digital divide (Gunasekaran et al 2015). But others found online recruitment provided a representative sample and enabled them to access geographically dispersed, isolated or stigmatised groups (Hokke et al 2018). Other researchers supported this outlook, viewing the use of online platforms to recruit participants and collect data as positive when working with young people, as it can be difficult to engage them in offline studies (Mason and Ide 2014, Gibson 2020).
Participation in ALPS required parents to contact the researcher, often after seeing a digital advert. Therefore, parents needed to be active on social media or registered online with charities and have access to email. Participants needed to have access to a smartphone or computer with a webcam to be included, but most families had seen digital adverts for ALPS, so had access to these devices.
The study took place during COVID-19 lockdowns in the UK. This meant that many parents were working and CYP were being educated virtually, with workplaces and schools providing them with devices so they could maintain contact remotely. The quality of participants’ internet connections varied, but only two interviews were severely interrupted because of bad connections; the researcher and the participants then reconnected and continued the interviews. Interviews took longer because of the interruptions, but participants were happy to continue and review any questions they had missed.
Zoom is a user-friendly video conferencing platform that has been used by schools and businesses as well as in other research studies (Matthews et al 2018, Daniels et al 2019, Lobe et al 2020, Oliffe et al 2021). Using Zoom was a safe way to interview CYP for ALPS as it has end-to-end encryption, which makes it secure and confidential. Virtual interviews were not recorded using Zoom, but were audio recorded on a Dictaphone. We were familiar with Zoom and had received some training, making technical support for participants easier. Use of a one-click link made access easier – participants did not have to download software or sign up to a service and share their contact information.
Zoom’s ‘share screen’ function was particularly useful for obtaining consent and assent, as the child, parent and researcher could view forms together. This ensured there was an opportunity for CYP to be actively involved in decision-making and equipped with as much information as their parents (Coyne et al 2014, Oulton et al 2016, Gaillard et al 2018).
Video interview platforms do not appear to dissuade adults and adolescents from participating in research (Seitz 2016, Shapka et al 2016). Many participants have reported enjoying using virtual interviews (Oliffe et al 2021). Archibald et al (2019) reported that the researchers and adult participants all preferred Zoom to other video interviewing platforms. Experience from ALPS suggests it is also appropriate for use with CYP.
ALPS interviews were originally planned to be conducted face-to-face. However, the pandemic started just as data collection was due to begin, so face-to-face interviews were no longer possible.
Conducting the interviews virtually would avoid delaying the study. However, it was vital that CYP could still be kept safe, and have their data protected, privacy respected and support needs met (Vaughn et al 2020). We therefore sought ethical approval to interview CYP virtually instead. The ethics board required clear information about the processes we had in place to protect and support CYP during and after their interviews.
It was made explicit in information sheets and in correspondence with parents before participation that CYP would have privacy during their interviews. This was important, to ensure CYP could speak freely without being concerned about the effects of their experiences on other members of their families (Morgan 2014). However, it did represent an ethical issue, as the CYP would need support if they became distressed. Parents were therefore asked to be available at the beginning and end of their child’s interview. A follow-up email was sent to check in with parents about their child and offer support services if required.
It was evident that some participants were not alone during their interviews; some parents also interrupted their children’s narratives to add things they thought were important. One participant showed and introduced their family who were in the same room, while another had to keep moving around their house to find a quiet space and was frequently interrupted by their sibling with CHD. Participants who were interrupted or overheard may have been reluctant to answer certain questions to avoid upsetting their family. However, the extent to which this happened and its effects on the interviews was difficult to determine.
Insisting on privacy as a mandatory aspect of interviews in future research is an option, but this may exclude participants who do not have physical space for privacy in their homes.
UK common law recognises children more than 16 years old as being able to make informed decisions independently (Health Research Authority 2018). There is an absence of common law in England, Wales and Northern Ireland about children’s right to consent to take part in research that is not a clinical trial of an investigational medicinal product. However, if a child younger than 16 years old can demonstrate maturity and an understanding of the risks and potential benefits, they can be classed as ‘Gillick’ competent and can consent or refuse to participate (Griffith 2021).
Any decisions where consent is required should be made by parents or guardians, but this may have an unintended effect of removing CYP from decision-making (Kennan and Dolan 2017). It is important to prioritise CYP’s understanding, respect their decision and gain meaningful assent (Oulton et al 2016).
Prioritising participants’ understanding was paramount when creating information sheets for ALPS. Therefore, separate information sheets were developed for children, young people and adults, as well as parents. Adult information sheets were for participants who could provide sole consent.
The children’s information sheet used a question-and-answer format and colourful speech bubbles with fewer written words (Figure 1). It also included a photo of the researcher and a short explanation of why the research was important. The information sheets for young people and adults also used a question-and-answer structure but were less colourful and included more adult-appropriate and professional language.
One difficulty was ensuring that CYP had adequate opportunity to review information before agreeing to take part.
A YouTube video, accessible by a QR code, was developed to supplement age-appropriate information sheets sent to their parents’ email addresses. This video was originally intended to be an aspect of inclusive research practice, but it became even more useful considering pandemic restrictions, when virtual researcher contact with CYP was limited to interview days (Parsons 2015, McInroy 2017).
There is a lack of information to guide researchers about how best to obtain digital consent and assent from CYP in line with good research practice. Lobe et al (2020) did briefly discuss the options for obtaining consent online, but not specifically with CYP.
We sent families printed copies of consent forms, which we reviewed with them online before the interview started. A screenshot was taken of signed consent forms, and a self-addressed envelope with paid postage provided for families to return signed paper forms. The latter proved an efficient method to obtain written consent, as all the completed consent forms were returned by post.
The online interviews included use of the Pictorial Representation of Illness and Self Measure (PRISM) (Sensky and Büchi 2016). This is widely used in adult and paediatric studies with individuals who experience personal or vicarious suffering to assess its burden (Büchi et al 2002, Melbardis Jørgensen and Jemec 2011).
PRISM uses two coloured circles to enable an open discussion about the burden of an illness. Participants illustrate their perceived burdens by drawing two circles, one representing themselves, another representing the illness. The distance between the centres of the ‘illness circle’ and ‘self-circle’ is measured to generate a quantitative value termed the Self Illness Separation (SIS) score (Sensky and Büchi 2016). A lower score suggests greater suffering (Sensky and Büchi 2016).
PRISM has also been used as a visual summary to open discussions about how things could change or to identify specific issues related to an illness (Büchi and Sensky 1999). This was its purpose in ALPS, where it was used to discuss the effect of CHD on siblings. CYP illustrated their perceived burdens by marking the distance between the two circles, one representing themselves and another representing their sibling’s CHD.
Traditionally, PRISM uses a white plastic board. A PRISM application has been created for iPhones (Sensky and Büchi 2016), but we could not locate any published research supporting or guiding its use online.
We considered a range of options to decide how best to use PRISM in a virtual interview (Table 1).
We explored these options during pilot interviews with CYP of the same age as the participants in ALPS. These revealed that young people found it easier than children did to navigate virtual methods of using PRISM, but it took more time to explain its use virtually. There were also difficulties explaining the process on different devices. Children found it easier to use a printed PRISM and a sticker. This also generated more discussion about why they placed their sibling’s illness circle in a specific position.
We ultimately decided to use a printed PRISM with a sticker, which the family would post back to us once the participant had completed it (Figure 2). Having something tactile to use during interviews helped open conversations and appeared to hold CYP’s interest. We provided green stickers, but we asked the participants what colour they thought the stickers should be, whether the green stickers were the right size and how they found completing the exercise.
However, sometimes the paper PRISM had not arrived by post by the time of the participant’s scheduled interview day, so we used Zoom’s ‘screen share’ function in those cases.
It is important when undertaking interviews about sensitive topics to develop a good rapport, as this may affect the quality of the data (Weller 2017, Roulston 2019). Researchers report that in virtual interviews with adults, participants feel able to open up and communicate feelings and experiences, as they are physically distant but feel they are together with the interviewer nevertheless (Archibald et al 2019, Oliffe et al 2021). However, some researchers criticise online interviews for lacking the proximity required to build rapport (Seitz 2016). Our experience from ALPS was that it was possible to convey empathy and warmth virtually, but that this was significantly harder than in person.
Communication science details a holistic perspective recognising the role of verbal and non-verbal communication. Spoken words account for 7% of a communication transaction, the way in which the words are relayed 38% and facial expressions 55% (Mehrabian 2017). Most facial expressions can be observed in video interviews but what is behind the webcam sometimes cannot be captured (Archibald et al 2019). Posture and position can also be important (Mehrabian 2017) and these cannot be fully observed during a virtual interview.
It proved challenging during the virtual interviews in ALPS to manage technical disruptions and support a child experiencing strong emotions. If a participant becomes distressed during face-to-face interviews, a researcher can offer support through physical gestures such as providing water or tissues and gauging a participant’s body language to provide appropriate comfort. None of this is possible in virtual interviews.
CYP are not digitally naïve, especially as they may now complete their schoolwork on online platforms (Iivari et al 2020). This sometimes led to boredom or distraction during ALPS interviews, especially with younger children. Trying to regain children’s focus sometimes meant asking the same question differently or changing the topic to afford more focus, returning to unanswered questions later in the interview. Subtle nuances in question structure are important in adapting an interview guide to an individual participant, which relies on the interviewer’s skill and experience (DeJonckheere and Vaughn 2019, McGrath et al 2019).
Video interviewing is cost-effective, reducing travel costs for families and researchers (Archibald et al 2019). It also enables inclusion of participants from a wider geographical area, who may not find it easy to travel (Gray et al 2020).
The COVID-19 pandemic meant more families were at home and often more available – all those interviewed for ALPS were available at the pre-arranged time.
CYP can also share their environments: their pets, family members or toys that are special to them. This assisted in creating an open discussion and encouraged a friendly introduction, which likely led to CYP feeling more relaxed and building rapport (Gray 2020). Having an insight into a child’s environment and being shown things of interest sparked captivating discussions. It helped to demonstrate the value CYP placed on objects, increasing our understanding of how these things helped; it also assisted with questions related to their sibling with CHD, in the context of their environment – for example, ‘How do you feel when your sister helps you build with Lego? What happens to your den when you have to stay with Nan if your sister goes in hospital?’
These insights are based on one team’s experience of undertaking research with CYP using Zoom. Future research should focus on how CYP experience using virtual platforms for interviews. It would be advantageous to understand more about designing research projects involving CYP that solely focus on online platforms for collecting data. More information on obtaining consent and assent from CYP online would be advantageous, to ensure standardised good research practice.
Pandemic restrictions resulted in many researchers experiencing disruption to their research. Navigating these challenges in the face of the wider ethical issues associated with research with CYP about sensitive topics makes examples from our study important to share. The benefits of virtual interviews for researchers are clear, but how CYP feel about being interviewed online remains unknown.
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