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Palliative Medicine
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Reviews

Challenges to participation in paediatric palliative care research: a review of the literature

Deborah Tomlinson

Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Ontario, Canada, Debarah.Tomlinson{at}sickkids.ca

Ute Bartels

Division of Haematology/Oncology, Hospital for Sick Children, Toronto, Ontario, Canada

Eleanor Hendershot

Division of Haematology/Oncology, Hospital for Sick Children, Toronto, Ontario, Canada

Julie Constantin

Division of Haematology/Oncology, Hospital for Sick Children, Toronto, Ontario, Canada

Glynis Wrathall

Division of Haematology/Oncology, Hospital for Sick Children, Toronto, Ontario, Canada

Lillian Sung

Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Ontario, Canada

It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team. Palliative Medicine 2007; 21 : 435—440

Key Words: paediatric palliative care research • parental recruitment • recruitment

Palliative Medicine, Vol. 21, No. 5, 435-440 (2007)
DOI: 10.1177/0269216307077173
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S Cadell, G Ho, L Jacques, K Wilson, B Davies, and R Steele
Considerations for ethics in multisite research in paediatric palliative care
Palliative Medicine, April 1, 2009; 23(3): 274 - 275.
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