title: Promoting an ethic of engagement in pediatric palliative care research.
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.
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Family Medicine, Centre of Genomics and Policy, McGill University, 5858 Côte-des-Neiges, Suite 300, Montréal, QC, H3S 1Z1, Canada. vasiliki.rahimzadeh@mail.mcgill.ca.
authors.forename: Vasiliki
authors.initials: V
authors.lastname: Rahimzadeh
authors.affiliation: Department of Family Medicine, McGill University, 5858 Côte-des-Neiges, Suite 300, Montréal, QC, H3S 1Z1, Canada.
authors.forename: Gillian
authors.initials: G
authors.lastname: Bartlett
authors.affiliation: Department of Family Medicine, McGill University, 5858 Côte-des-Neiges, Suite 300, Montréal, QC, H3S 1Z1, Canada.
authors.forename: Cristina
authors.initials: C
authors.lastname: Longo
authors.affiliation: Department of Family Medicine, McGill University, 5858 Côte-des-Neiges, Suite 300, Montréal, QC, H3S 1Z1, Canada.
authors.forename: Laura
authors.initials: L
authors.lastname: Crimi
authors.affiliation: Division of Oral Health and Society, Pediatric Palliative Care Research, Montreal Children's Hospital, McGill University, #530-2001 McGill College Avenue, Montreal, QC, H3A 1G1, Canada.
authors.forename: Mary Ellen
authors.initials: ME
authors.lastname: Macdonald
authors.affiliation: Department of Pediatrics, Montreal Children's Hospital Research Institute, McGill University Health Center, 1001 Décarie Boulevard, Montreal, H4A 3J1, QC, Canada.
authors.forename: Nada
authors.initials: N
authors.lastname: Jabado
authors.affiliation: Biomedical Ethics Unit, McGill University, 3647 Peel St, Montreal, QC, H3A 1X1, Canada.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Ells
mesh_terms: D006801:Humans; D010166:Palliative Care / Q000379:methods*; D010358:Patient Participation / Q000379:methods*; D010371:Pediatric Nursing / Q000379:methods*; D011788:Quality of Life; D012106:Research