Canadian resource guides for individuals and families affected by primary immunodeficiency

Abstract

A diagnosis of immunodeficiency can be challenging for families as they navigate the emotional impact of this diagnosis, as well as the potential financial burden of treatment. For rare diseases such as primary immunodeficiency (PI), patients are often required to take a proactive role in managing their own care and may be engaged with health care providers who have minimal experience with PI disease. These providers may also have limited access to information on the resources available for this population. A review of the information available showed that a paucity of information existed for these families who were looking for appropriate resources related to their diagnosis. The PI Social Work Network was established in 2011 by Immunodeficiency Canada to develop a network of social workers across Canada who work with patients diagnosed with PI. This network has had a focus on support programs, education, and research. Resource guides were created by the network to support families by providing information on both provincial as well as national resources available. While these lists are not exhaustive, there is an attempt to keep them as up to date as possible. If additional psychosocial support would be beneficial or a family requires support accessing resources, they should be directed to their local hospital social worker, or they may contact Wendy Shama, MSW, RSW, at Immunodeficiency Canada. Statement of novelty: National and provincial resources guides have been created for families and individuals affected by primary immunodeficiency.