Considerations for ethics in multisite research in paediatric palliative care

Cadell, Susan; Ho, Gilian; Jacques, L; Wilson, Kate; Davies, Betty; Steele, Rose

doi:10.1177/0269216309103122

Cited by 11 publications

(13 citation statements)

References 19 publications

(19 reference statements)

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“…This difficulty was not limited to mobile or community clinic contexts, where 'who' will present with 'what' was unknown on a daily basis, but also included ensuring consent continued when health conditions changed rapidly or after a client died. Further, a tension emerged between the need to put in place processes that were sensitive to the changing needs of palliative clients and the requirement to produce standard protocols for all participants (Cadell et al, 2009). Together, these examples point to issues of justice in relation to recruitment and inclusion of aged care research participants, as well as fair distribution of, and participation in, the benefits of evaluations by significant groups within aged care client cohorts (NH&MRC, 2007).…”

Section: Insights Into Ethical Approval Processesmentioning

confidence: 99%

Progress in centralised ethics review processes: Implications for multi-site health evaluations

Prosser

Davey

Gibson

2015

Evaluation and Program Planning

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Section: Insights Into Ethical Approval Processesmentioning

confidence: 99%

Progress in centralised ethics review processes: Implications for multi-site health evaluations

Prosser

Davey

Gibson

2015

Evaluation and Program Planning

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“…Previous studies described the IRB process as difficult and time-consuming in multisite research because of the need for multiple IRB submissions. [5][6][7][8][9] Institutional review boards were initially designed to provide oversight to local single-site studies and often do not have procedures to deal with multicenter studies. 26 For example, even if a study has previous approval from another institution's IRB, subsequent institutions will often still require their own full review of the project.…”

Section: Irb Approval: Process For Coordination Of Multisite Approvalmentioning

confidence: 99%

“…26 For example, even if a study has previous approval from another institution's IRB, subsequent institutions will often still require their own full review of the project. 5 This can lead to long delays in data collection that need to be anticipated. In the United Kingdom, the ethics review burden for health research is managed through the "Integrated Research Application System," using 1 standard application form, submitted online with reviews conducted weekly.…”

Section: Irb Approval: Process For Coordination Of Multisite Approvalmentioning

confidence: 99%

“…This model of ethics review has been advocated in the United States and Canada for multisite studies but is currently not available. 5,28 Researchers should discuss with their institution's IRB the possibility of reciprocal acceptance of IRB approval from other institutions involved in multisite projects and should develop materials that can be shared among sites.…”

Section: Irb Approval: Process For Coordination Of Multisite Approvalmentioning

confidence: 99%

“…1 Multisite research al-for all sites is a concern that has been expressed by several investigative teams. [5][6][7][8][9] The purpose of this article is to describe key considerations for planning and implementing multisite research based on our experiences and reflections in conducting a large, international, multisite study. The successes and challenges we have encountered are presented and recommendations provided.…”

Section: Introductionmentioning

confidence: 99%

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Cultural Competence

Gannotti¹

2010

Pediatric Physical Therapy

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Dr Jeffries); Northwest Pediatric Therapies, Issaquah, Washington (Dr Yocum).Purpose: To highlight key considerations for planning and implementing multisite research based on experiences and reflections in conducting a large, international, multisite study. Description: Successes and challenges encountered throughout a multisite study process, and collective recommendations for future researchers are presented. Considerations addressed include creation of the research team and a "community of practice," study preparation and management time, approval by institutional review boards, training of future researchers, recruitment and retention of participants, and dissemination and translation of study materials to consumers. Importance to Members: Multisite research has the potential to create knowledge for pediatric physical therapy through collaboration among knowledgeable researchers and expert practitioners and by increasing the potential for generalization of findings. Effective planning, including anticipation of challenges, is critical to a successful study. Our collective experiences may assist practitioners and researchers in planning, implementing, and completing future multisite studies. (Pediatr Phys Ther 2010;22:408-416) lows for collaboration of researchers and expert clinicians with varied knowledge, interests, and expertise and completion of studies that are not feasible to conduct at a single site. Multisite studies are needed to meet sample size requirements for research on populations with lower incidences 2 and to improve generalization of findings. Another advantage is the potential to foster collaboration between practitioners and researchers and, as a result, enhance translation of findings into practice.Despite the benefits, multisite studies are complex and require considerable resources, infrastructure, and coordination. Previous articles have described the challenges with multisite research including site coordination, 2 consistency of data collection, 2,3 selection of team members and team leadership, 4 consensus on research procedures, 4 and decisions on authorship. 3,4 The time and effort required to receive institutional review board (IRB) approval

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Pediatric Palliative Care: Global Perspectives

Knapp¹,

Madden²,

Fowler‐Kerry³

2012

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A special thanks always to my mom and dad, Art and Hazel Fowler, I am so lucky to have parents like you. Joel, my husband, you are a constant support and have cooked more than your share of dinners. To my two beautiful daughters, I love you both and I hope that I have given you the inspiration to go after your dreams and desires. Throughout the work on this book, I often thought often about how fortunate and blessed I am to have two healthy children.

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Considerations for ethics in multisite research in paediatric palliative care

Cited by 11 publications

References 19 publications

Progress in centralised ethics review processes: Implications for multi-site health evaluations

Progress in centralised ethics review processes: Implications for multi-site health evaluations

Cultural Competence

Pediatric Palliative Care: Global Perspectives

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