2004-2009 (1 year automatic extension, completed in 2010)
$1,312,700.00 Canadian Institutes of Health Research - New Emerging Team Grant (NET)
Principal Investigator: Dr. H. Siden, MD, MHSc; Co-applicants: Dr. S. Cadell, MSW, PhD; Dr. B Davies, RN, PhD, FAAN; Dr. R. Steele, RN, PhD; & Dr. L. Straatman, MD, FRCPC
2008
$1,800
Principal Investigator Dr. S. Cadell, MSW, PhD; co-investigators Dr. R. Steele, RN, PhD; and Dr. A. DeLongis, PhD
The primary aim of this research addresses the question “How do couples cope together and even grow together in the face of the stressful circumstances of caring for a child with a life-threatening illness?” The Couples study is an extension of the CIHR-funded study entitled “Caregiving Parents of Children with a Life-Limiting Illness: Beyond Stress and Coping to Growth”. The purpose of the Couples research is to analyze the data dyadically to gain insight into how relationship factors influence personal growth. Using quantitative and qualitative methodologies to analyze questionnaires and couple interviews, this research seeks to gain a clear understanding of marital/couple factors that enhance or diminish personal growth in parents who are actively caring for children with life-threatening illnesses. Ultimately this knowledge can help improve the lives of children living with illness if we can better understand and potentially strengthen the relationship of the child’s caregiving parents.
May 2005-2007
B.R.A.I.N.Child (June 2005 – June 2007) $49,592.41
Investigators & Staff: Eric Bouffet, Tom Chau, Ceilidh Eaton Russell, David Brownstone, Cindy Van Halderen
When a dying child loses the ability to speak, how do families live with this and how can we help? Through this research we interviewed families to learn about the barriers to communication that children faced, strategies they used to try to overcome those barriers, as well as identifying the most important issues for families to communicate about and the most significant aspects of non verbal communication.
This research is supported by the B.R.A.I.N. Child Foundation.
June 2006-2007
Investigators: Maria Rugg RN MN CHPCN (c), Dr. Christine Harrison PhD
The purpose of this pilot study is to modify a tool that measures knowledge of, attitudes towards and the experience with advance care planning among nurses and establish the face and content validity of this modified tool among health care professionals caring for children facing life threatening illness.
CIHR 2004-2006
$146,760
Investigators and Staff: Dr. David Nicholas, PHD, RSW, Dr. Beverley Antle, PHD, RSW, Laura Beaune, M.S.W, RSW, Dr. Allan Coates, Donna Koller, Ph.D., Robin Gearing, M.S.W., R.S.W, Ph. D (Cand.), Dr. Larry Librach, Robyn Salter Goldie, MSW, RSW, Dr. Lori West
Children have been substantially affected by the recent SARS outbreaks in Canada despite representing a relatively small proportion of patients treated for Severe Acute Respiratory Syndrome (SARS). This study examines the experiences of 45 children (aged 6-19) with varying medical conditions who received inpatient and/or outpatient treatment during the period of strict infection control practices related to SARS, their parents and health care providers’. This study explores participants’ perspectives regarding the psychosocial and service delivery consequences of the Canadian SARS outbreak.
This research is sponsored by The Hospital for Sick Children and funded by the Canadian Institute for Health Research (CIHR)
2005
$10,000 CIHR Institute of Human Development, Child and Youth Health, Workshop Funding Program submitted September 2005
Investigators and Staff: Betty Davies, Hal Siden, Rose Steele, Susan Cadell, Lynn Straatman, Carol Hartnett, Carly Fleming, Gail Andrews, Lisa Jacques
Children with progressive life-threatening diseases often present with worsening intolerance of enteral feeds during the end-of-life phase. The PedPalNet was able to bring together 31 researchers, clinicians, and stakeholders from Canada, USA, and Europe to work intensively over a two day period to reach consensus about the phenomenon. A retrospective case-series was performed to identify patients in a pediatric palliative care setting who experienced a progressive intolerance to enteral feeds. The study has been submitted for publication.
2005
$3,500 to prepare and present proposal at October 2005 workshop- Michael Smith Foundation for Health Research (British Columbia) Child and Youth Research Network Workshop Attendance Grant submitted
Investigators and Staff: Lynn Straatman, Sheila Marshall, Susan Cadell, Grant Charles, Richard Young, Gail Andrews, Lenore Omesi [PedPalNet members who were additional co-applicants for the initial workshop and participants in the 2008 workshop: Betty Davies, Hal Siden, and Rose Steele]
The focus of this project was to explore the various transitions experienced by youths with chronic and life-threatening disabilities and health conditions by researching the physical, psychosocial, and developmental aspects of the process as well as the impact on healthcare provision and economics.
March, 2006 [Completed 2006]
$4,974 Canadian Institutes of Health Research CIHR Pillars III & IV Development Grant submitted to University of British Columbia in April 2005 (internal funds)
Investigators and Staff: David Brown, Hal Siden, Susan Cadell, Gail Andrews, Lenore Omesi [PedPalNet members who were additional co-applicants for the initial development grant: Betty Davies, Rose Steele, and Lynn Straatman]
The PedPalNet received a UBC Development Grant to prepare a proposal for a study to describe the flow of patients through numerous locations and services in the community, hospitals, and hospice. Funding for a full study was not received, but a pilot project is currently underway at Canuck Place Children’s Hospice in conjunction with the CHOP/PACT study.
February 2nd, 2004 - Letter of Intent submitted in Sept. 2003
$5,000 Canadian Institutes of Health Research
Investigators: Betty Davies, Hal Siden, Rose Steele, Susan Cadell, Lynn Straatman; Research Staff: Carly Fleming, Lisa Jacques, Gail Andrews, Lenore Omesi, Hayden Kremer
The specific objectives of the Pediatric Palliative Care NET (PedPalNet) Transitions in Pediatric Palliative and End of Life Care study are to: (1) foster cross-theme research in palliative and end of life care with an emphasis on a multidisciplinary approach, (2) create a team environment that favours the development of innovative research projects that will advance our understanding of palliative and end of life care, and (3) train and establish new investigators capable of undertaking research relevant to understanding palliative and end of life care.
(2006 - 2009)
CIHR $190,503
Investigators & Staff: Susan Cadell, Rose Steele, Hal Siden, Betty Davies, Stephen Liben, David Hemsworth, Lynn Straatman, Laura Beaune, Robin Kramer, Lillian Rallison, Deborah DeVlaming, Kelli Stajduhar, Kathy Wilson-Forrest
When parents are caring for ill children, the stress is often compounded. Indeed, caring for a child with a life-limiting illness represents one of the most traumatic experiences a parent can endure. The primary aim of this research addresses the question “What are the factors that allow parent caregivers to survive and even grow in the face of the stressful circumstances of caring for a child with a life-limiting illness?”
This research will occur under the auspices of a CIHR-funded New Emerging Team (NET) grant entitled Transitions in pediatric palliative and end-of-life care.
