↡↡ Innovations in Research with a Medically Fragile Population: A Case Study of Young Adult Graduates of Pediatric Palliative Care
Authors: Cook, K., Siden H., Jack, S., Thabane, L., Browne, G.
Journal Information: (2014). Qualitative Health Research
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG).
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↡↡ Using colors to assess pain in toddlers: validation of ‘the rainbow pain scale’-a proof-of-principle study
Authors: Mahon, P., Holsti, L., Siden H., Strahlendorf, C., Turnham, L., Giaschi, D.
Journal Information: (2014). Journal of Pediatric Oncology Nursing
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children.
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↡↡ Characteristics of a pediatric hospice palliative care program over 15 years
Authors: Siden H., Chavoshi, N., Harvey, B., Parker, A., Miller, T.
Journal Information: (2014). Pediatrics
Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children’s Hospice (CPCH) is North America’s first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010.
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↡↡ An integrative approach to music therapy in pediatric palliative care
Authors: Clark, B.A., Siden H., Straatman L.
Journal Information: (2014). Journal of Palliative Care
Research into the value of music therapy in pediatric palliative care (PPC) has identified quality of life as one area of improvement for families caring for a child in the terminal stages of a life-threatening illness. This small-scale investigation collected data in a multisite, international study including Minnesota, USA, and Melbourne, Australia.
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↡↡ Mortality trends for pediatric life threatening conditions
Authors: Chavoshi, N., Miller, T., Siden H.
Journal Information: (2014). American Journal of Hospice and Palliative Medicine
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions.
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↡↡ Lexicon of Terms in Pediatric Palliative Care
Authors: Spicer S, MacDonald ME, Vadeboncoeur C, Davies D, Siden H.
Citation: (2014) Lexicon of Terms in Pediatric Palliative Care [Internet].
This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the use of these words in Canada in the context of care for children with chronic complex and life-threatening conditions.
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↡↡ Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
Authors: Steele, R., Siden H., Cadell, S., Davies, B., Andrews, G., Feichtinger, L., & Singh, M.
Journal Information: (2014). Archives of Disease in Childhood
Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet little is known about their patterns of symptoms and functional abilities.
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↡↡ Impact of research participation on parents of seriously ill children
Authors: Steele, R., Cadell, S., Siden H., Andrews, G., Smit Quosai, T., Feichtinger, L.
Journal Information: (2014). Journal of Palliative Medicine
There is a paucity of research evidence to guide health care providers’ practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families.
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↡↡ Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model
Authors: Cadell, S., Hemsworth, D., Smit Quosai, T., Steele, R., Davies, E., Liben, S., Straatman, L., Siden H.
Journal Information: (2014). American Journal of Orthopsychiatry
Providing care is the basic expectation of parents with children who are predominantly well . However, for parents of children born with or later diagnosed with a life-limiting illness, they also become caregivers in additional ways. This paper tests two structural equation models of possible factors that allow these parent caregivers to experience growth in these circumstances.
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