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Partnership guide: A resource to support children to understand and participate when serious illness decisions are considered

https://bcch.andornot.com/en/permalink/catalog122906

Ethics Department and Patient Partners. Vancouver, BC: BC Children's Hospital & BC Women's Hospital + Health Centre , 2020.

URL: http://www.cw.bc.ca/library/pdf/pamphlets/BC-Childrens-Partnership-Guide.pdf

Material Type: Online; Booklet

This resource from BC Children?s Hospital can support families to explore their perspectives together and incorporate ways to foster the appropriate inclusion of children in healthcare decisions.; The Partnership Guide was developed to improve the guidance, support and participation of children ag…

1 url

URL: http://www.cw.bc.ca/library/pdf/pamphlets/BC-Childrens-Partnership-Guide.pdf

Corporate Author: Ethics Department and Patient Partners

Place of Publication: Vancouver, BC

Publisher: BC Children's Hospital & BC Women's Hospital + Health Centre

Publication Date: 2020

Physical Description: 21 pages

Subject: Pain Control

Abstract: This resource from BC Children?s Hospital can support families to explore their perspectives together and incorporate ways to foster the appropriate inclusion of children in healthcare decisions.; The Partnership Guide was developed to improve the guidance, support and participation of children aged 7-14 years with serious illness. This education resource provides up to date research knowledge in the area of child participation, pediatric decision making and child-focused activities and interventions to support children with this process.; Fostering the developing autonomy of children is an essential ethical principle and this guide supports the inclusion of children in decision-making to their ability and desire, to participate in decisions that impact their health.

Language: English

Material Type: Online; Booklet

URLs

http://www.cw.bc.ca/library/pdf/pamphlets/BC-Childrens-Partnership-Guide.pdf

You, your child, and arthritis

https://bcch.andornot.com/en/permalink/catalog123813

Arthritis Society. Toronto, ON: Arthritis Society , 2020. 6th ed.

URL: https://arthritis.ca/getmedia/42e31329-43c9-433b-89fb-7e3fc4f30493/ChildhoodArthritis_July23_2020.pdf

Material Type: Booklet; Online

You, Your Child [and] Arthritis is a valuable resource for families of children with juvenile arthritis (JA). This guide provides the information parents/caregivers need to understand their child?s disease and to feel comfortable caring for them. It also covers the different types of juvenile arthr…

1 url

URL: https://arthritis.ca/getmedia/42e31329-43c9-433b-89fb-7e3fc4f30493/ChildhoodArthritis_July23_2020.pdf

Corporate Author: Arthritis Society

Responsibility: Revised by Shirley ML Tse, MD, FRCPC , Associate Professor, University of Toronto, Program Director, Division of Rheumatology, SickKids. *Review support by Pamela Jarvis, RSSW, Arthritis Society and Michelle Bridge, OT Reg. (Ont.), ACPAC, Arthritis Society.

Edition: 6th ed.

Place of Publication: Toronto, ON

Publisher: Arthritis Society

Publication Date: 2020

Physical Description: PDF; 24 pages

Subject: Juvenile Idiopathic Arthritis; Juvenile Rheumatoid Arthritis

Abstract: You, Your Child [and] Arthritis is a valuable resource for families of children with juvenile arthritis (JA). This guide provides the information parents/caregivers need to understand their child?s disease and to feel comfortable caring for them. It also covers the different types of juvenile arthritis, current treatments including medications, and other important elements of treatment, such as physiotherapy and occupational therapy. In addition, there are important sections for parents/caregivers learning to cope with a child who has a chronic disease. Pediatric rheumatology teams across Canada recommend and endorse this resource for all families of children with arthritis.

Language: English

Material Type: Booklet; Online

URLs

https://arthritis.ca/getmedia/42e31329-43c9-433b-89fb-7e3fc4f30493/ChildhoodArthritis_July23_2020.pdf

The diagnosis and management of Duchenne Muscular Dystrophy: A guide for families

https://bcch.andornot.com/en/permalink/catalog123812

Muscular Dystrophy Canada. Toronto, ON: Muscular Dystrophy Canada , 2019.

URL: https://muscle.ca/wp-content/uploads/2019/09/DMDstandardsofcare-EN.pdf

Material Type: Booklet; Online

This guide for families summarizes the results of an international consensus on the medical care of Duchenne muscular dystrophy (DMD). This effort was supported by the US Centers for Disease Control and Prevention (CDC), in collaboration with patient advocacy groups and the TREAT-NMD network. The m…

1 url

URL: https://muscle.ca/wp-content/uploads/2019/09/DMDstandardsofcare-EN.pdf

Corporate Author: Muscular Dystrophy Canada

Place of Publication: Toronto, ON

Publisher: Muscular Dystrophy Canada

Publication Date: 2019

Subject: Muscular Dystrophy

Abstract: This guide for families summarizes the results of an international consensus on the medical care of Duchenne muscular dystrophy (DMD). This effort was supported by the US Centers for Disease Control and Prevention (CDC), in collaboration with patient advocacy groups and the TREAT-NMD network. The main document is published in Lancet Neurology.; The recommendations are based on an extensive study by 84 international experts in DMD diagnosis and care chosen to represent a broad range of specialties. They independently ?rated? methods of care used in the management of DMD to say how ?necessary?, ?appropriate? or ?inappropriate? each one was at different stages of the course of DMD. In total they considered more than 70,000 different scenarios. This allowed them to establish guidelines that the majority agreed represented the best practice for DMD care.