Research in Pediatric Palliative and End of Life Care Rose Steele, RN, PhD Associate Professor, Scho

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Research in Pediatric Palliative and End of
Life Care Rose Steele, RN, PhDAssociate
Professor, School of Nursing, York
UniversityAdjunct Scientist, The Hospital for
Sick Children
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Team Members

• Susan Cadell, MSW, PhD, Faculty of Social Work,
  Wilfrid Laurier University
• Betty Davies, RN, PhD, FAAN, Department of
  Family Health Care Nursing, University of
  California, San Francisco
• Hal Siden, MD, MHSc, FRCPC, Department of
  Pediatrics, University of British Columbia (PI)
• Rose Steele, RN, PhD, School of Nursing, York
  University
• Lynn Straatman, MD, FRCPC, Faculty of Medicine,
  University of British Columbia

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Who Are We?

• Multidisciplinary group
• - clinicians, researchers
• - passionate re PPC
• - want to provide optimal care to
  children/families
• Clinical expertise medicine, nursing, social
  work
• - research backgrounds qualitative
  quantitative methods
• Numerous cross-affiliations ? extensive
  networking
• - experts
• - stakeholder groups
• Face a daunting, but exciting, task
• - developing a research program in PPC that
  transcends care delivery settings/diagnoses

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Why Did We Join Together?

• PPC people small group in North America ( in
  world)
• Varied personal/professional connections
• - through Canuck Place, first free-standing
  childrens hospice in North America
• Initial and general discussions regarding
  research ideas
• - mostly by e-mail, no plan of action
• Canadian Institutes of Health Research (CIHR)
  announced major funding for end-of-life care

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CIHR FundingJuly 2004-June 2009

• Only project to focus on PPC
• - ranked highly in scientific review process
• Overarching goal To create knowledge and
  evidence so children with life-limiting
  conditions - and their families - get best care
  possible
• Unique relationship with the only two childrens
  hospices in North America (Canuck Place and
  George Mark Childrens House) plays a key role in
  our work
• Builds on Canadas pioneering work
• - enhances Canadas reputation for leadership in
  childrens health
• - committed to international collaboration
  sharing of vision, wisdom, research findings, and
  experience

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Main Goal for the NET

• Undertake cross-sectional and longitudinal
  research to create a holistic picture of
  transitions along the trajectory of children
  living with life-limiting conditions and their
  families

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Other Goals

• Establish multi-centre research in three main but
  overlapping CIHR themes
• Biomedical and Clinical Indicators
• Families
• Health Services
• Engage holistically in child-centred research to
  integrate numerous eligible key areas related to
  PPC
• Create a critical mass of children/families
  interacting with researchers, trainees,
  healthcare providers focused on improving PPC and
  EOL care
• Establish and support new investigators
• - build capacity in PPC
• - train clinician scientists critical mass of
  researchers from an array of disciplines

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Building Research Capacity

• Funded PhD students 1 Social Work 1
  Psychology (Vancouver) 0.5 Social Work
  (Vancouver)
• Affiliated PhD students 1 Nursing (Calgary) 2
  Nursing (San Francisco) 1 Nursing (Toronto) 1
  Interdisciplinary Studies - Medicine (Halifax)
• Clinical/Research Medical Fellow (Vancouver)
• Funded Masters students 1 Nursing 1
  Counselling Psychology (Vancouver)
• NET members supervise students re NET work also
  may supervise thesis/dissertation work even at
  university outside home (e.g., co-supervisor MSN
  UBC committee PhD Calgary)

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Biomedical and Clinical Indicators Theme

• Focus
• To develop evidence-based tools guiding the
  diagnosis, prognosis, and management of
  life-limiting childhood conditions.

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Psychosocial / Families Theme

• Focus
• To support an in-depth review of families
  experiences as they move along the illness
  trajectory from diagnosis, through illness to
  end-of-life care and death, followed by
  bereavement.

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Health Services Theme

• Focus
• To establish a research infrastructure to
  support and optimize the quality, coordination,
  and continuity of care for children with
  life-limiting conditions.

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NET Program Themes and How They Overlap
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NET Research Activities
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What Next?

• Continue to build capacity through attracting,
  supporting, and mentoring trainees and new
  investigators / clinician scientists
• Continue to expand collaborations and
  partnerships, e.g., through stakeholders meeting
  held in Sept. 2006
• Continue to conduct cross-sectional studies in 3
  themes and develop longitudinal program of
  research (anticipate submitting integrated,
  longitudinal proposal fall 2007)
• Seek ongoing operational funds as well as
  infrastructure support for established team