Findings from our projects dealing with childhood chronic illnesses

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Holsti, L., England, S., Gibson, M., McWilliams, B., Hermansen, A.-M., & Siden, H. (2024). Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative, Exploratory Study. Children (Basel, Switzerland), 11(3), 319. https://doi.org/10.3390/children11030319 Cite

Huntsman, R. J., Elliott, J., Lewis, E., Moore-Hepburn, C., Alcorn, J., Mansell, H., Appendino, J. P., Bélanger, R. E., Corley, S., Crooks, B., Denny, A. M., Finkelstein, Y., Finley, A., Fung, R., Gilpin, A., Litalien, C., Jacobs, J., Oberlander, T. F., Palm, A., … Kelly, L. E. (2024). Removing barriers to accessing medical cannabis for paediatric patients. Paediatrics & Child Health, 29(1), 12–16. https://doi.org/10.1093/pch/pxac129 Cite

Pawliuk, C., Cheng, S., Zheng, A., & Siden, H. (Hal). (2024). Librarian involvement in systematic reviews was associated with higher quality of reported search methods: a cross-sectional survey. Journal of Clinical Epidemiology, 166, 111237. https://doi.org/10.1016/j.jclinepi.2023.111237 Cite

Noriega, E. C., Siden, H., & Lavergne, M. R. (2023). Infants, children, youth and young adults with a serious illness in British Columbia: a population-based analysis using linked administrative data. Canadian Medical Association Open Access Journal, 11(6), E1118–E1124. https://doi.org/10.9778/cmajo.20220181 Cite

Widger, K., Brennenstuhl, S., Nelson, K. E., Seow, H., Rapoport, A., Siden, H., Vadeboncoeur, C., Gupta, S., & Tanuseputro, P. (2023). Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study. BMC Pediatrics, 23(1), 375. https://doi.org/10.1186/s12887-023-04186-9 Cite

Pawliuk, C., Hermansen, A.-M., Barrans, C., & Siden, H. (Hal). (2023). Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol. OSF Preprints. https://doi.org/10.31219/osf.io/svztf Cite

Boerner, K. E., Pearl-Dowler, L., Holsti, L., Wharton, M.-N., Siden, H., & Oberlander, T. F. (2023). Family Perspectives on In-Home Multimodal Longitudinal Data Collection for Children Who Function Across the Developmental Spectrum. Journal of Developmental & Behavioral Pediatrics, 44(4), e284. https://doi.org/10.1097/DBP.0000000000001183 Cite

Widger, K., Brennenstuhl, S., Tanuseputro, P., Nelson, K. E., Rapoport, A., Seow, H., Siden, H., Vadeboncoeur, C., & Gupta, S. (2023). Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008–2014). Canadian Medical Association Open Access Journal, 11(2), E298–E304. https://doi.org/10.9778/cmajo.20220070 Cite

Thomas, R., Pesut, B., Siden, H., Treschow, M., & Puurveen, G. (2023). Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study. Palliative Care and Social Practice, 17, 26323524231209060. https://doi.org/10.1177/26323524231209060 Cite

Alotaibi, Q., & Siden, H. (2023). An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries. Palliative Care and Social Practice, 17, 26323524231201868. https://doi.org/10.1177/26323524231201868 Cite

Burkitt, C., Genik, L., Merbler, A., Siden, H., Oberlander, T. F., & Symons, F. (2023). Pain and Symptom Management in Neurodevelopmental Disorders: Sensory and Nociceptive Function/Pain and Symptom Management. In D. D. Eisenstat, D. Goldowitz, T. F. Oberlander, & J. Y. Yager (Eds.), Neurodevelopmental Pediatrics: Genetic and Environmental Influences (pp. 697–711). Springer International Publishing. https://doi.org/10.1007/978-3-031-20792-1_43 Cite

Fishman, I., Siden, H., & Vadeboncoeur, C. (2022). Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability. BMC Pediatrics, 22(1), 571. https://doi.org/10.1186/s12887-022-03632-4 Cite

Birnie, K. A., Killackey, T., Backlin^p, G., Gavin^p, F., Harris^p, C., Jordan^p, I., Kim^p, L., Marianayagam^p, J., Swidrovich^p, J., Lalonde, C., Tunji-Ajayi, L., Oberlander, T., Kirby-Allen, M., Lambert, S., Siden, H., Swidrovich, J., Noel, M., & Stinson, C. L. and J. (2022). Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain. Healthcare Quarterly, 24(Special Issue). https://www.longwoods.com/content/26778/healthcare-quarterly/ensuring-equity-and-inclusion-in-virtual-care-best-practices-for-diverse-populations-of-youth-with-c Cite

Gunning, M., Rotenberg, A., Anderson, J., Balneaves, L. G., Brace, T., Crooks, B., Hall, W., Kelly, L. E., Rassekh, S. R., Rieder, M., Virani, A., Ware, M. A., Zaslawski, Z., Siden, H., & Illes, J. (2022). Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth. Neuroethics, 15(1), 3. https://doi.org/10.1007/s12152-022-09478-y Cite

Fletcher, S., Pawliuk, C., Ip, A., Huh, L., Rassekh, S. R., Oberlander, T. F., & Siden, H. (2022). Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review. Child: Care, Health and Development, 48(1), 33–44. https://doi.org/10.1111/cch.12909 Cite

Oberoi, S., Protudjer, J. L. P., Rapoport, A., Rassekh, S. R., Crooks, B., Siden, H., Decker, K., Ananth, P., Chapman, S., Balneaves, L. G., Vanan, M. I., & Kelly, L. E. (2022). Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer. Cancer Reports, 5(9), e1551. https://doi.org/10.1002/cnr2.1551 Cite

Pawliuk, C., Brown, H. L., Widger, K., Dewan, T., Hermansen, A.-M., Grégoire, M.-C., Steele, R., & Siden, H. (Hal). (2021). Optimising the process for conducting scoping reviews. BMJ Evidence-Based Medicine, 26(6), 312–312. https://doi.org/10.1136/bmjebm-2020-111452 Cite

Huntsman, R. J., Kelly, L. E., Alcorn, J., Appendino, J. P., Bélanger, R. E., Crooks, B., Finkelstein, Y., Gilpin, A., Lewis, E., Litalien, C., Jacobs, J., Moore-Hepburn, C., Oberlander, T., Rassekh, S. R., Repetski, A. E., Rieder, M. J., Shackelford, A., Siden, H., Szafron, M., … Vaillancourt, R. (2021). Improving the regulation of medical cannabis in Canada to better serve pediatric patients. CMAJ, 193(41), E1596–E1599. https://doi.org/10.1503/cmaj.202169 Cite

Rizakos, S., Parmar, A., Siden, H. H., & Orkin, J. (2021). The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin. Journal of Pain and Symptom Management. https://doi.org/10.1016/j.jpainsymman.2021.07.026 Cite

Pawliuk, C., Chau, B., Rassekh, S. R., McKellar, T., & Siden, H. (Hal). (2021). Efficacy and safety of paediatric medicinal cannabis use: A scoping review. Paediatrics & Child Health, 26(4), 228–233. https://doi.org/10.1093/pch/pxaa031 Cite

Fletcher, S., Pawliuk, C., Ip, A., Oberlander, T., & Siden, H. (2021). Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol. JBI Evidence Synthesis, 19(5), 1251. https://doi.org/10.11124/JBIES-20-00001 Cite

Gibbard, M., Mount, D., Rassekh, S. R., & Siden, H. (Hal). (2021). Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study. CMAJ Open, 9(2), E563. https://doi.org/10.9778/cmajo.20200212 Cite

Bao, D., Feichtinger, L., Andrews, G., Pawliuk, C., Steele, R., & Siden, H. (Hal). (2021). Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions. Journal of Pain and Symptom Management, 61(3), 449-455.e1. https://doi.org/10.1016/j.jpainsymman.2020.08.033 Cite

Aldridge, C. E., Osiovich, H., (Hal) Siden, H., Study, R., Study, G., & Elliott, A. M. (2021). Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences. Journal of Genetic Counseling, 30(2), 616–629. https://doi.org/10.1002/jgc4.1353 Cite

Pawliuk, C., Widger, K., Dewan, T., Brander, G., Brown, H. L., Hermansen, A.-M., Grégoire, M.-C., Steele, R., & Siden, H. (Hal). (2020). Scoping review of symptoms in children with rare, progressive, life-threatening disorders. BMJ Supportive & Palliative Care, 10(1), 91–104. https://doi.org/10.1136/bmjspcare-2019-001943 Cite

Stenekes, S., Penner, J. L., Harlos, M., Proulx, M.-C., Shepherd, E., Liben, S., Thompson, G., MacConnell, G., Grégoire, M.-C., & Siden, H. (Hal). (2019). Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care. Journal of Palliative Care, 34(3), 151–159. https://doi.org/10.1177/0825859718790627 Cite

van Karnebeek, C. D. M., Beumer, D., Pawliuk, C., Goez, H., Mostafavi, S., Andrews, G., Steele, R., & Siden, H. (2019). A novel classification system for research reporting in rare and progressive genetic conditions. Developmental Medicine & Child Neurology, 61(10), 1208–1213. https://doi.org/10.1111/dmcn.14180 Cite

Widger, K., Wolfe, J., Friedrichsdorf, S., Pole, J. D., Brennenstuhl, S., Liben, S., Greenberg, M., Bouffet, E., Siden, H., Husain, A., Whitlock, J. A., Leyden, M., & Rapoport, A. (2018). National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care. Journal of Palliative Medicine, 21(9), 1249–1256. https://doi.org/10.1089/jpm.2017.0532 Cite

Siden, H. (2018). Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases. Children, 5(2), 28. https://doi.org/10.3390/children5020028 Cite

Tatla, S. K., Holsti, L., Andrews, G. S., Feichtinger, L., Steele, R., & Siden, H. (2017). Charting the territory: Describing the functional abilities of children with progressive neurological conditions. Research in Developmental Disabilities, 71, 191–199. https://doi.org/10.1016/j.ridd.2017.10.001 Cite

Matthews, A. M., Tarailo-Graovac, M., Price, E. M., Blydt-Hansen, I., Ghani, A., Drögemöller, B. I., Robinson, W. P., Ross, C. J., Wasserman, W. W., Siden, H., & van Karnebeek, C. D. (2017). A de novo mosaic mutation in SPAST with two novel alternative alleles and chromosomal copy number variant in a boy with spastic paraplegia and autism spectrum disorder. European Journal of Medical Genetics, 60(10), 548–552. https://doi.org/10.1016/j.ejmg.2017.07.015 Cite

Friedrichsdorf, S. J., Postier, A. C., Andrews, G. S., Hamre, K. E., Steele, R., & Siden, H. (2017). Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study. Journal of Pain Research, 10, 1841–1852. https://doi.org/10.2147/JPR.S138153 Cite

Widger, K., Seow, H., Rapoport, A., Chalifoux, M., & Tanuseputro, P. (2017). Children’s End-of-Life Health Care Use and Cost. Pediatrics, e20162956. https://doi.org/10.1542/peds.2016-2956 Cite

Davies, B., Steele, R., Krueger, G., Albersheim, S., Baird, J., Bifirie, M., Cadell, S., Doane, G., Garga, D., Siden, H., Strahlendorf, C., & Zhao, Y. (2017). Best Practice in Provider/Parent Interaction. Qualitative Health Research, 27(3), 406–420. https://doi.org/10.1177/1049732316664712 Cite

Friedrichsdorf, S. J. (2016). Four steps to eliminate or reduce pain in children caused by needles (part 1). Pain Management. https://doi.org/10.2217/pmt-2016-0050 Cite

Friedrichsdorf, S. J. (2016). Contemporary Pediatric Palliative Care: Myths and Barriers to Integration into Clinical Care. Curr Pediatr Rev. Cite

Widger, K., Davies, D., Rapoport, A., Vadeboncoeur, C., Liben, S., Sarpal, A., Stenekes, S., Cyr, C., Daoust, L., Grégoire, M.-C., Robertson, M., Hodgson-Viden, H., Laflamme, J., & Siden, H. (2016). Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study. CMAJ Open, 4(4), E562–E568. https://doi.org/10.9778/cmajo.20160054 Cite

Davies, B., Steele, R., Krueger, G., Albersheim, S., Baird, J., Bifirie, M., Cadell, S., Doane, G., Garga, D., Siden, H., Strahlendorf, C., & Zhao, Y. (2016). Best Practice in Provider/Parent Interaction. Qualitative Health Research, 1049732316664712. https://doi.org/10.1177/1049732316664712 Cite

Physician stress in the context of medical aid in dying. (2016, August 22). UBC Medical Journal. https://ubcmj.com/physician-stress-in-the-context-of-medical-aid-in-dying/ Cite

Cook, K. A., Jack, S. M., Siden, H., Thabane, L., & Browne, G. (2016). Investing in Uncertainty: Young Adults with Life-Limiting Conditions Achieving Their Developmental Goals. Journal of Palliative Medicine, 19(8), 830–835. https://doi.org/10.1089/jpm.2015.0241 Cite

Conte, T., Mitton, C., Erdelyi, S., Chavoshi, N., & Siden, H. (2016). Pediatric palliative care program versus usual care and healthcare resources utilization in British Columbia: a matched-pairs cohort study. J Palliat Med. https://doi.org/10.1089/jpm.2016.0177 Cite

Siden, H., & Chavoshi, N. (2016). Shifting Focus in Pediatric Advance Care Planning From Advance Directives to Family Engagement. J Pain Symptom Manage. https://doi.org/10.1016/j.jpainsymman.2016.05.010 Cite

Stephenson, E., DeLongis, A., Steele, R., Cadell, S., Andrews, G. S., & Siden, H. (2016). Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems. Journal of Pediatric Psychology, jsw053. https://doi.org/10.1093/jpepsy/jsw053 Cite

Widger, K., Friedrichsdorf, S., Wolfe, J., Liben, S., Pole, J. D., Bouffet, E., Greenberg, M., Husain, A., Siden, H., Whitlock, J. A., & Rapoport, A. (2016). Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer. BMC Palliative Care, 15, 12. https://doi.org/10.1186/s12904-016-0085-8 Cite

Siden, H. (Hal), Steele, R., & Cadell, S. (2015). Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research. Palliative Medicine, 0269216315620945. https://doi.org/10.1177/0269216315620945 Cite

Doherty, M., Wheaton, L., & Vadeboncoeur, C. (2015). Case 2: A 10-year-old boy with leg pain and swelling. Paediatrics & Child Health, 20(3), 149–151. http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract&jnlKy=5&atlKy=13378&isuKy=1255&isArt=t&fromfold=Current+Issue&fold=Abstract&utm_source=eTOC&utm_medium=email&utm_content=Article%20title%20link&utm_campaign=PCH_20_3 Cite

Chamberlain, C., Spicer, S., & Curiel, K. daSilva. (2015). Case 1: A primary care provider enhances family support in perinatal palliative care. Paediatrics & Child Health, 20(3), 149–151. http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract&jnlKy=5&atlKy=13377&isuKy=1255&isArt=t&fromfold=Current+Issue&fold=Abstract&utm_source=eTOC&utm_medium=email&utm_content=Article%20title%20link&utm_campaign=PCH_20_3 Cite

Rasmussen, L. A., & Grégoire, M.-C. (2015). Challenging neurological symptoms in paediatric palliative care: An approach to symptom evaluation and management in children with neurological impairment. Paediatrics & Child Health, 20(3), 159–165. http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract&jnlKy=5&atlKy=13382&isuKy=1255&isArt=t&fromfold=Current+Issue&fold=Abstract&utm_source=eTOC&utm_medium=email&utm_content=Article%20title%20link&utm_campaign=PCH_20_3 Cite

Rapoport, A., & Liben, S. (2015). Paediatric palliative care: There is always more we can do. Paediatrics & Child Health, 20(3), 123–124. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403269/ Cite

Widger, K., Bouffet, E., Friedrichsdorf, S., Greenberg, M., Husain, A., Liben, S., Pole, J. D., Siden, H., Whitlock, J., Wolfe, J., & Rapoport, A. (2015). Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative. Paediatrics & Child Health, 20(3), 157–158. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/ Cite