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BMC Palliative Care
Published in: BMC Palliative Care 1/2015

Open Access 01-12-2015 | Debate

Promoting an ethic of engagement in pediatric palliative care research

Authors: Vasiliki Rahimzadeh, Gillian Bartlett, Cristina Longo, Laura Crimi, Mary Ellen Macdonald, Nada Jabado, Carolyn Ells

Published in: BMC Palliative Care | Issue 1/2015

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Abstract

Background

This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC—and by extension PPC research—is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research.

Discussion

Principles of pediatric research ethics, theoretical tenets of the “new sociology of the child(hood),” and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles.

Conclusion

PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
Footnotes
1
Some circumstances complicate children’s ability to participate in research, to be sure. This can be particularly true for research using language-based methods (such as in qualitative research) with infants, children who are otherwise nonverbal, or those who suffer from severe cognitive impairment.
 
2
The ethical complexities concerning mature minors and clinical decision-making typify this case scenario. A number of studies have sought to gauge the level of decision-making ability and maturity that minors demonstrate in the face of critical illness (see for example Miller et al. [73]) where findings indicate some adolescents exhibit abilities that match, or surpass, those of consenting adults. On this point, there is some consensus in the adolescent psychology literature that suggest minors appeal to morality and logic in informing their decisions by middle adolescence [74].
 
3
It is worth noting that some scholars argue listening to children’s voices alone is not sufficient to promote due representation [71] or can be tokenistic if not followed up with measurable action [57, 75].
 
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Metadata
Title
Promoting an ethic of engagement in pediatric palliative care research
Authors
Vasiliki Rahimzadeh
Gillian Bartlett
Cristina Longo
Laura Crimi
Mary Ellen Macdonald
Nada Jabado
Carolyn Ells
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2015
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-015-0048-5

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