Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology

Tates, Kiek; Zwaanswijk, Marieke; Otten, Roel; Dulmen, Sandra van; Hoogerbrugge, Peter M.; Kamps, Willem A.; Bensing, J.M.

doi:10.1186/1471-2288-9-15

Cited by 191 publications

(202 citation statements)

References 51 publications

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“…We expected this methodology to facilitate recruitment as more men would be willing to participate when they are able to join the discussions at their own convenience, as has been shown among study populations in other domains. 19 In addition to approaching several midwifery practices, men were recruited by placing a link to an invitation letter on 20 different websites and other social media platforms for parents-to-be. In total, 19 men were willing to participate in the study (Table 1).…”

Section: Focus Groupsmentioning

confidence: 99%

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

et al. 2014

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Non-invasive prenatal testing (NIPT) and its potential to test for multiple disorders has received much attention. This study explores attitudes of women and men towards NIPT, and their views on widening the scope of prenatal testing in a country with a low uptake of prenatal screening (The Netherlands). Five focus groups with low-risk pregnant women (n ¼ 28), three focus groups with men (n ¼ 19) and 13 interviews with high-and low-risk pregnant women were conducted. Participants felt that current prenatal screening has great disadvantages such as uncertain results and risk of miscarriage from follow-up diagnostics. Characteristics of NIPT (accurate, safe and early testing) could therefore diminish these disadvantages of prenatal screening and help lower the barrier for participation. This suggests that NIPT might allow couples to decide about prenatal testing based mostly on their will to test or not, rather than largely based on fear of miscarriage risk or the uncertainty of results. The lower barrier for participation was also seen as a downside that could lead to uncritical use or pressure to test. Widening the scope of prenatal testing was seen as beneficial for severe disorders, although it was perceived difficult to determine where to draw the line. Participants argued that there should be a limit to the scope of NIPT, avoiding testing for minor abnormalities. The findings suggest that NIPT could enable more meaningful decision-making for prenatal screening. However, to ensure voluntary participation, especially when testing for multiple disorders, safeguards on the basis of informed decision-making will be of utmost importance. INTRODUCTIONNon-invasive prenatal testing (NIPT) allows detection of chromosomal aneuploidies in the foetus by using circulating cell-free foetal DNA (cffDNA) in the plasma of pregnant women. 1 This technique makes it possible to detect foetal trisomies 21, 13 and 18 as early as 9 weeks into the pregnancy, and perhaps even earlier. 2 As the procedure of NIPT consists of only drawing a blood sample, it eliminates the risk of miscarriage associated with invasive diagnostic procedures, that is, chorionic villus sampling (CVS) and amniocentesis. Consequently, NIPT assures both earlier and safer prenatal testing, although diagnostic confirmation of abnormal NIPT results by invasive testing is still required due to the chance of false positive test results. 3 In 2010, Lo et al 4 showed that it is possible to deduce the entire genomic sequence of a foetus through NIPT, implying that NIPT could identify a much wider range of genetic disorders in the future. These major developments in the field of prenatal testing are generating a great amount of debate regarding the potential impact, benefits and drawbacks of NIPT. Greely 5 , for example, provides a summary of the ethical questions that have been raised with regard to the implications of NIPT on the current prenatal screening setting and

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Section: Focus Groupsmentioning

confidence: 99%

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

et al. 2014

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“…In this study, an asynchronous online focus group was viewed as having several advantages over a traditional focus group. Advantages included time for more in-depth and reflective responses from participants (Turney & Pocknee, 2008), greater participant anonymity (Turney & Pocknee, 2008), increased convenience in terms of participating from any location at any time (Krueger & Casey, 2009), and automatic capture of discussion data (Tates et al, 2009). …”

Section: Designmentioning

confidence: 99%

Exploring Winter Community Participation Among Wheelchair Users: An Online Focus Group

Ripat

Colatruglio²

2015

Occupational Therapy In Health Care

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ABSTRACT. The aim of this qualitative study was to gain an understanding of what people who use wheeled mobility devices (WMDs; e.g., manual and power wheelchairs, and scooters) identify as environmental barriers to community participation in cold weather climates, and to explore recommendations to overcome environmental barriers to community participation. Researchers conducted an online asynchronous focus group that spanned seven days, with eight individuals who use WMDs. Each day, participants were asked to respond to a moderator-provided question, and to engage with one another around the topic area. The researchers analyzed the verbatim data using an inductive content-analysis approach. Four categories emerged from the data: (1) winter barriers to community participation; (2) life resumes in spring and summer; (3) change requires awareness, education, and advocacy; and (4) winter participation is a right. Participants confirmed that it is a collective responsibility to ensure that WMD users are able to participate in the community throughout the seasons.

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“…Deggs and Woodyatt have published the strengths and opportunities of online FGDs, along with others [22][23][24][25][26]. Further, the utilization of this methodology for this study is available online for review, which describes recommendations for including mothers in qualitative studies to yield rich data [18].…”

Section: Discussionmentioning

confidence: 99%

Exploring Social Media Group Use Among Breastfeeding Mothers: Qualitative Analysis (Preprint)

Skelton¹,

Evans²,

LaChenaye³

et al. 2018

Preprint

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Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology

Cited by 191 publications

References 51 publications

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

Exploring Winter Community Participation Among Wheelchair Users: An Online Focus Group

Exploring Social Media Group Use Among Breastfeeding Mothers: Qualitative Analysis (Preprint)

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