↡↡ Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study
Authors: Widger, K., Davies, D., Rapoport, A., Vadeboncoeur, C., Liben, S., Sarpal, A., Stenekes, S., Cyr, C., Daoust, L., Grégoire, M.C., Robertson, M., Laflamme, J., Siden, H.
Journal Information: (2016). CMAJ Open.
Background: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care.
Methods: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs.
Results: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days.
Interpretation: Program growth and changes in patients’ demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
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↡↡ Physician stress in the context of medical aid in dying
↡↡ Best practice in provider/parent interaction
Authors: Davies, B., Steele, R., Krueger, G., Albersheim, S., Baird, J., Bifirie, M., Cadell, S., Doane, G., Garga, D., Siden, H., Strahlendorf, C. & Zhao, Y.
Journal Information: (2016). Qualitative Health Research.
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, lifethreatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement.
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↡↡ Shifting focus in pediatric advance care planning from advance directives to family engagement
Authors: Siden, H. & Chaboshi, N.
Journal Information: (2016). Journal of Pain & Symptom Management.
The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients’ goals for the future. One important result of an ACP discussion may be an advance directive (AD), a written order delineating explicit wishes regarding medical interventions.
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↡↡ Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Authors: Stephenson, E., DeLongis A., Steele, R., Cadell, S., Andrews, GS., Siden, H.
Journal Information: (2016) Journal of Pediatric Psychology
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
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↡↡ Pediatric palliative care program versus usual care and healthcare resources utilization in British Columbia: a matched-pairs cohort study
Authors: Conte, T., Mitton, C., Erdelyi, S., Chavoshi, N., Siden, H.
Journal Information: (2016). Journal of Palliative Medicine.
Evidence on the impact of pediatric palliative care programs (PPCP) on resource utilization is scarce and requires broader measures to include utilization beyond the hospital setting.
OBJECTIVE: This research aims to provide a Canadian comparative analysis between children in a PPCP with those under usual care, including hospice use to inpatient resource use measurement.
METHODS: We conducted a retrospective matched-pairs (disease and age at death) cohort comparison of children who died in hospice versus hospital (never enrolled in a PPCP), from 2008 to 2012. Utilization was retrieved from administrative databases and chart review. The main outcomes were number of admissions and length of stay (LOS).
RESULTS: Eleven pairs were found. PPCP users were more likely to have advanced directives (100% vs. 27%). After controlling for disease and age, we found no significant difference in number of admissions; however, PPCP users had an increase in admissions post-referral compared to pre-referral (median 3.08 admissions), driven by the need for critical care. We did not find a significant difference in LOS, but observed longer admissions among PPCP users pre- (1.91 days/month) and post-referral (3.66 days/month) compared to usual care. Over 60% of inpatient utilization shifted to the hospice post-referral.
DISCUSSION: The terminal pediatric population referred to PPCP may systematically differ from those under usual care even before enrollment, presenting with higher inpatient utilization in critical care nearing death. A significant portion of inpatient utilization shifted to the hospice, with implications for resource reallocation and enhancements in PPCP referrals.
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↡↡ Investing in Uncertainty: Young adults with life-limiting conditions achieving their developmental goals
Authors: Cook, K.A., Jack, S.M., Siden, H., Thabane, L., Browne, G.
Journal Information: (2016) Journal of Palliative Medicine.
BACKGROUND: With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.
OBJECTIVES: The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.
DESIGN: This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.
RESULTS: YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others “got stuck” resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.
CONCLUSIONS: This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.
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↡↡ Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer
Authors: Widger, K., Friedrichsdorf, S., Wolfe, J., Liben, S., Pole, J., Bouffet, E., Greenberg, M., Husain, H., Siden, H., Whitlock, J., Rapoport, A.
Journal Information: (2016) BMC palliative care.
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.
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