Cultural variation in informed consent for clinical research participation

Resnik, David B.; Hecking, Julia

doi:10.4324/9780429320927-6

Cited by 1 publication

(2 citation statements)

References 1 publication

Supporting

Mentioning

Contrasting

Order By: Relevance

“…When Western, individualistic medical research is conducted in non‐Western settings, participants may experience distrust as medical decisions usually involve consultation with leaders in the community or family 21 . This is of significance in New Zealand, where over a third of the population comprises ethnicities originating from cultures that place more emphasis on connections to the community or family rather than the individual 22 . Therefore, informed consent should take into account participants' cultural background, including having research staff of the same ethnic group as the participant, 23 and may require seeking community‐level informed consent before obtaining individual consent 24 .…”

Section: Discussionmentioning

confidence: 99%

“…21 This is of significance in New Zealand, where over a third of the population comprises ethnicities originating from cultures that place more emphasis on connections to the community or family rather than the individual. 22 Therefore, informed consent should take into account participants' cultural background, including having research staff of the same ethnic group as the participant, 23 and may require seeking community-level informed consent before obtaining individual consent. 24 Māori voice may be promoted by encouraging relevance to Māori, such as meaningful reporting of the findings, and by inspiring research staff to familiarize themselves with concepts of Māori ethnicity, ancestry and descent.…”

Section: Burden Of Participationmentioning

confidence: 99%

See 1 more Smart Citation

Experiences of parents whose children participated in a longitudinal follow‐up study

Franke

Rogers

Wouldes

et al. 2022

Health Expectations

View full text Add to dashboard Cite

Background: Long-term follow-up is necessary to understand the impact of perinatal interventions. Exploring parents' motives and experiences in consenting to their children taking part in longitudinal studies and understanding what outcomes are important to families may enhance participation and mitigate the loss to follow-up.As existing evidence is largely based on investigators' perspectives using Western samples, the present pilot study explored parents' perspectives in a multicultural New Zealand context. Methods: Data were generated using semi-structured interviews with parents whose children had participated in a longitudinal study after neonatal recruitment.Parents' experiences of being part of the study were analysed thematically using an inductive approach.Results: Parents (n = 16) were generally happy with the outcomes measured.Additionally, parents were interested in lifelong goals such as the impact of parental diabetes. We identified three themes: (1) Facilitators: Research participation was aided by motives and parent and research characteristics such as wishing to help others and straightforward recruitment; (2) Barriers: A hesitancy to participate was due to technical and clinical research aspects, participation burden and cultural barriers, such as complex wording, time commitment and nonindigenous research and (3) Benefits: Children and parents experienced advantages such as the opportunity for education.Conclusions: Parents reported positive experiences and described the unexpected benefit of increasing families' health knowledge through participation. Improvements for current follow-up studies were identified. Different ethnicities reported different experiences and perspectives, which warrants ongoing research, particularly with indigenous research participants.

show abstract