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Chapter 5
with low literacy gave during the design process of the TTSQ, which was described in Chapter 3 of the thesis. These ten people had already formed a group as participants following a reading and writing course. This made them less hard-to-reach because they had already ‘come out’ as having low literacy when they decided to register for the course. They felt more confident acting as part of a group. And their teacher, who they already trusted, acted as an intermediary during the recruitment phase and stood by them during the design sessions. This helped these designers feel safe. Having a well-respected and trusted intermediary was also a success factor in the recruitment of low health literacy participants in the evaluation study of the Turkish TTSQ, which was described in Chapter 4.3. The researchers managed to include fifty percent participants with low health literacy within this study population. Once included, though, accommodating low literacy participants still proved to be challenging. Despite all efforts made by the researchers to inform potential participants thoroughly and make sure that participation was voluntary, it seemed that some participants had not really foreseen what they would get themselves into when they agreed to participate in the study. The majority of the participants seemed to have ‘a lot on their plate’. Not only were they in low health but they also had social and financial problems, which made it hard for them to concentrate on the tasks given to them during the data collection process. Another complicating factor during data collection was the fact that participants were interviewed by a Dutch-speaking researcher, helped by an interpreter if necessary, while they had to complete a Turkish questionnaire. This bilingual setting made it even harder for participants to concentrate on their tasks. All of these complicating factors may have caused them not to be as positive about the use of the Turkish TTSQ in future health care as the participants in the evaluation of the Dutch version of the TTSQ were. Although problems with and solutions for recruitment of hard-to-reach participants are described, problems with and solutions for conducting research within these vulnerable populations are still hard to find in the literature. More research is necessary to gain insight into what exactly caused the problems the participants in the evaluation study of the Turkish version of the TTSQ encountered in both completing the questionnaire and participating in the study itself. Still, the results of the study confirmed the results of the evaluation studies of the Dutch version of the TTSQ that the current prototype does not fully solve the problems low (health) literacy persons have with completing
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