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The purpose and aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values and support) may contribute to research fatigue among youth and parents of youth with HIV, CF, and T1D. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews, completed a demographics form, and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: blurred lines and hope for the future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated, and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered.

Objective: Research on the impact study participation has on participants has shown that, even though they may find it stressful during participation, overall, they appear to benefit personally and emerge with a positive cost-benefit-balance. In 2013, the first psychological study on German occupation children (GOC), a potentially vulnerable and hidden study population, was conducted, after which respondents shared a high volume of positive feedback. In the context of a follow-up survey, the impact of study participation on participants was investigated to determine the causes of this distinctly positive outcome. Methods: Mixed-methods approach using the standardized Reactions to Research Participation Questionnaire (RRPQ) as well as open-ended questions on expectations toward participation, and changes due to participation in dealing with GOC background and in personal life. Analyses included N = 65 participants (mean age 68.92, 40% men) and were carried out with descriptive measures for RRPQ and inductive content analysis for open-ended questions. Results: Participants specified six motives for participation besides answering the standardized form; 46.2% (n = 30) saw their expectations met. Although participation was related to negative emotions during participation, participants’ overall experience was positive; 89.2% (n = 58) stated an inclination to participate again. 52.3% (n = 34) reported participation had helped develop new ways of dealing with their GOC experiences; five contributing factors were observed. Changes in private life were reported by 24.6% (n = 16); three aspects were identified. The vast majority (81.5%; n = 53) stated, following participation, they were able to disclose their GOC background to others. Participants placed emphasis on four aspects of this experience. Conclusion: Although study participation was described as emotionally challenging during participation, participants felt that the overall impact it had on them was positive. The study was the first of its kind and thus presented an opportunity for a previously hidden population to step out of the dark, simultaneously gaining insight that helped them better understand themselves as GOC, and thereby increase their capacity for self-acceptance. Participants Frontiers in Political Science 01 frontiersin.org Kaiser and Glaesmer 10.3389/fpos.2022.853562 also benefitted from learning about the study’s findings and connecting with other GOC through activities that ensued. In conclusion, results suggest that vulnerable and/or hidden populations benefit from specific attention to their lived experiences even at higher age

No description available.