Title: Research in Pediatric Palliative and End of Life Care Rose Steele, RN, PhD Associate Professor, School of Nursing, York University Adjunct Scientist, The Hospital for Sick Children
1Research in Pediatric Palliative and End of
Life Care Rose Steele, RN, PhDAssociate
Professor, School of Nursing, York
UniversityAdjunct Scientist, The Hospital for
Sick Children
2Team 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
3Who 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
4Why 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
5CIHR 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
6Main 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
7Other 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
8Building 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)
9Biomedical and Clinical Indicators Theme
- Focus
- To develop evidence-based tools guiding the
diagnosis, prognosis, and management of
life-limiting childhood conditions.
10Psychosocial / 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.
11Health 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.
12NET Program Themes and How They Overlap
13NET Research Activities
NET Theme Status of project Psychosocial / Families Biomedical and Clinical Indicators Health Services/NET-Specific Research
Data Collection Complete An Exploration of Families Transition into a Childrens Hospice Program (manuscript almost complete)
Data Collection Underway Caregiving Parents of Children with Life-Limiting Illnesses Beyond Stress and Coping to Growth (CIHR funded x3 yrs 2006-09) Parental and Professional Decision-Making Regarding Benefits and Burdens of Interventions for Children with Life-Liming Conditions Nutritional Failure at End of Life in a Pediatric Population (funded consensus workshop held Feb. 2006 2 articles in review) Use of Methadone for the Treatment of Pain in Palliative Pediatric Medicine Research Priorities in Pediatric Palliative Care A Delphi Process (third phase underway to prioritize 14 items)
Grant Writing/Planning for Pilot Study Experiences of Non-Caucasian Families in Pediatric Palliative Care (Latino/Chinese study in USA) Process Maps in Pediatric Palliative Care A Tool for Understanding the Flow of Patients and Families Through the Health Care System
Collaboration with other Researchers Underway Validation of the Pediatric Pain Profile (non-verbal children Dr. Hunt, UK) Biomarkers in Pain Co-Lab Evaluation
Research Idea Fathers Experience with Pediatric End of Life Care(Study underway in USA) Telomeres as Indicators of Parental Stress
14What 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