Health benefit for the child and promotion of the common good were the two most important reasons for participation in the FinIP vaccine trial

Nieminen, Heta; Syrjänen, Ritva; Puumalainen, Taneli; Sirén, Päivi; Palmu, Arto A.

doi:10.1016/j.vaccine.2015.06.010

Cited by 3 publications

(6 citation statements)

References 24 publications

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“…In this study, we analysed data from 5,696 SEED families to explore whether reasons differed by child's diagnostic and behavioural characteristics at enrolment (ie study group). As with other childhood studies, [13][14][15][16][17][18]22,[24][25][26][27][28][29] we found that families participating in this study frequently stated altruism (ie wanting to help other children or families) and perceived personal benefit (ie learning something specific about their child's development) as reasons for participating.…”

Section: Principalfindingssupporting

confidence: 75%

“…We established six categories, a priori, based on the existing literature and anecdotal reports from site interviewers: altruism (help others), perceived personal benefit (wants assessment or answers), peripheral relationship with ASD/DD (knows people outside their household with ASD or DD), ASD research interest (stated finding answer/cures/causes of ASD/DD), financial incentive and reputation of agency/investigator (wants to assist, or admires, inviting agency or investigator). [1][2][3][4][5][6][7][8][9][14][15][16][17][18][19][20][21][22][23][24] We added four additional reason categories during the initial coding pass to accommodate the breadth of responses [general research interest (noted research other than ASD/ DD), social encouragement (someone asked or encouraged them to consider the study), desired specific study result (stated a specific outcome of interest) and miscellaneous], resulting in ten final categories plus 'no reason'.…”

Section: Discussionmentioning

confidence: 99%

“…10,11 Most available data are from clinical trials that have potential to directly benefit the child. [12][13][14][15][16][17][18][19][20][21][22] These trials reported altruism, direct benefit to the child and trust in research as reasons parents consented to their child's participation. Only one study compared reasons for participation between children with and without illness-parents of 126 healthy and 135 'sick' children, reported being motivated by direct benefit with low risk to their child.…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…15,17 The range of reasons reported may be truncated because many studies provided only fixed-choice responses. 14,16,24,27,28 Studies that asked open-ended questions were small, conveniencesampled subsets of participants approached after study participation was complete, rather than at enrolment or during participation. 12,13,25,26,29 Thus, the time lag since enrolment or the benefits experienced from participation may have altered parents' perception of why they initially decided to participate.…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…The range of reasons reported may be truncated because many studies provided only fixed‐choice responses 14,16,24,27,28 . Studies that asked open‐ended questions were small, convenience‐sampled subsets of participants approached after study participation was complete, rather than at enrolment or during participation 12,13,25,26,29 …”

Section: Introductionmentioning

confidence: 99%

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Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?

Bradley

Tapia

DiGuiseppi

et al. 2022

Paediatric Perinatal Epid

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Background Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents’ motivations to enrol children in observational studies. Objectives Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi‐site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment. Methods We included families of children, age 2–5 years, participating in SEED (n = 5696) during 2007–2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non‐ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed‐effects models to evaluate associations of each reason with group and demographics, using POP as reference. Results Participants gave 1–5 reasons for participation (mean = 1.7, SD = 0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49–3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61–2.29) or suspected ASD (OR 3.67, 95% CI 2.99–4.50) and non‐ASD DD (OR 1.80, 95% CI 1.50–2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups. Conclusions We identified meaningful differences between groups in parent‐reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants.

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Section: Principalfindingssupporting

confidence: 75%

Section: Discussionmentioning

confidence: 99%

Section: Backg Rou N Dmentioning

confidence: 99%

Section: Backg Rou N Dmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?

Bradley

Tapia

DiGuiseppi

et al. 2022

Paediatric Perinatal Epid

View full text Add to dashboard Cite

show abstract

Why do people take part in vaccine trials? A mixed methods narrative synthesis

Dean

Rose

Jones

et al. 2023

Patient Education and Counseling

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Parental Views of Facilitators and Barriers to Research Participation: Systematic Review

2022

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BACKGROUND AND OBJECTIVES: Low enrollment within pediatric research increases the cost of research, decreases generalizability, and threatens to exacerbate existing health disparities. To assess barriers and facilitators to pediatric research participation and evaluate differences by enrollment status. METHODS: Data Sources include PubMed, Embase, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, and Web of Science. Study selection include peer reviewed articles that contained information related to facilitators and barriers to the parental decision whether to enroll their child in research and included the views of parents who declined. We extracted barriers and facilitators to research, enrollment status, and study characteristics, including study design, quality, and patient population. RESULTS: Seventy articles were included for analysis. Facilitators of participation included: benefits, trust, support of research, informational and consent related, and relational issues. Common facilitators within those categories included health benefit to child (N = 39), altruism (N = 30), and the importance of research (N = 26). Barriers to participation included: study-related concerns, burdens of participation, lack of trust, general research concerns, informational and consent related, and relational issues. Common barriers within those categories included risks to child (N = 46), burdens of participation (N = 35), and the stress of the decision (N = 29). We had a limited ability to directly compare by enrollment status and no ability to analyze interactions between facilitators and barriers. We only included studies written in English. CONCLUSIONS: This review identified key facilitators and barriers to research participation in pediatrics. The findings from this review may guide researchers aiming to create interventions to improve the parental experience of recruitment for pediatric studies and to optimize enrollment rates.

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Health benefit for the child and promotion of the common good were the two most important reasons for participation in the FinIP vaccine trial

Abstract: Background and aims: The Finnish Invasive Pneumococcal disease (FinIP) vaccine trial was a nationwide

Cited by 3 publications

References 24 publications

Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?

Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?

Why do people take part in vaccine trials? A mixed methods narrative synthesis

Parental Views of Facilitators and Barriers to Research Participation: Systematic Review

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