An online survey to assess parents' preferences for learning about child health research

Knisley, Lisa; Le, Anne; Scott, Shannon D.

doi:10.1002/nop2.1027

Cited by 4 publications

References 68 publications

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An online survey to assess parents' preferences for learning about child health research

Knisley

Scott

2021

Nursing Open

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However, limitations in the availability of reliable pediatric data often forces healthcare providers to make treatment decisions for children based on evidence generated in adult patients (Klassen et al., 2008). A landmark report from the Council of Canadian Academies (2014) called for flexible and innovative approaches for child health research, including participant recruitment, to reduce inequities in health and improve the evidence base that informs pediatric medical practice. Participant recruitment is a crucial part of study design as research success often relies on having enough participants (Denhoff et al., 2015). Many studies have problems with recruitment, regardless of their setting and clinical field (Tracey et al., 2020), but ethical and practical issues often exacerbate these problems in child health (Caldwell et al.

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An online survey to assess parents' preferences for learning about child health research

Knisley

Scott

2021

Nursing Open

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A survey of caregiver preferences regarding research participation in the paediatric emergency department

Ma,

Rajagopal,

Stang

et al. 2023

Paediatrics &Amp; Child Health

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Objectives Emergency department (ED) visits can be stressful for families and can affect caregiver willingness to consent to participating in research. Our objective was to describe when and how caregivers wish to be informed about clinical research during their child’s ED visit. Methods An electronic survey was performed for families presenting to 10 Canadian paediatric EDs. A convenience sample of 1456 caregivers with children aged 0 to 17 years were enrolled. The survey tool was created (with an expert panel) using published methodological guidelines, including item generation/reduction, pre- and pilot-testing, and clinical sensibility assessment. Research-specific questions included the best time to be approached, the breadth of study opportunities presented, and best ways to encourage families to participate. Results Caregivers reported that the best times to be approached regarding research were in the waiting room (45.3%, 653/1441), after physician assessment (39.0%, 562/1441), or just prior to discharge (9.9%, 143/1441). 52.2% (351/672) wanted to hear about all available research studies, while 47.8% (321/672) wanted to be informed of studies relevant only to their child’s condition. Reported best ways to encourage families to participate in research included: incentives (e.g., gift cards/parking passes [31.2%, 230/737]), providing a clear explanation of study intent (30.7%, 226/737), and appealing to altruism (25.4%, 187/737). Conclusions There is wide variability in family preferences for timing of research-related conversations, suggesting that families could be approached in the waiting room, and if that is inconvenient or impractical, they could be offered a deferred conversation (i.e., after physician assessment or prior to discharge).

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Engaging Red River Métis families in Manitoba in the development of child health resources – findings from a qualitative study

Knisley,

Driedger,

Hartling

et al. 2024

Res Involv Engagem

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Background Most research that includes Red River Métis tends to be pan-Indigenous. Grouping Métis with First Nations and Inuit can diminish their unique and diverse experiences, as well as distinctions-based approaches. Taking a step toward addressing this problem, the Manitoba Métis Federation (MMF; the national government of the Red River Métis) invited researchers within the Canadian network Translating Emergency Knowledge for Kids to partner in this research, which focuses on understanding engagement strategies that can help expose Red River Métis parents to child health research opportunities and build trust and transparency amongst research partners and participants. Methods A qualitative descriptive approach underpinned by a participatory paradigm guided this study. Semi-structured interviews were conducted with 19 Red River Métis parents and Elders via Zoom or telephone. An inductive thematic analysis approach was used to explore patterns and themes across the data. Results Analysis generated four themes: (a) show me why you are here; (b) make it easier for me to take part; (c) create welcoming spaces; and (d) it should be a give and take experience. Parents emphasized the importance of kinship and personal connections, and said they want to hear about child health study opportunities from trusted organizations. They want researchers to be transparent about their research motivations and to offer multiple ways to participate to help them fit research into their busy lives. Relational approaches within the research process (e.g., creating informal/welcoming environments, gathering over food, fostering shared learning/creative opportunities) are prominent in the findings. Conclusion There is a dearth of research focused on the distinct experiences of Red River Métis families. Engaging Red River Métis parents early in the research process will help incorporate their preferences and perspectives into the design of a larger project to adapt child health resources. More training is needed to help researchers improve their abilities to engage in self-reflection, listen, recognize power relationships, and demonstrate trust and transparency in each research interaction. It is only through respectful and successful engagement that child health research can be relevant, applicable and positively impact Red River Métis children, families and communities.

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An online survey to assess parents' preferences for learning about child health research

Cited by 4 publications

References 68 publications

An online survey to assess parents' preferences for learning about child health research

An online survey to assess parents' preferences for learning about child health research

A survey of caregiver preferences regarding research participation in the paediatric emergency department

Engaging Red River Métis families in Manitoba in the development of child health resources – findings from a qualitative study

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