Gaps and barriers parents face

What has been done

Quick guides and resources

Inventory of practical information

• The role of a caregiver is all consuming. Parents speak of not being able to turn off ‘caregiver’ role and are uncomfortable stepping out of role that they are very familiar with. There are few formal mechanisms to connect families of medically complex children with one another.

• Families are increasingly isolated during peak illness times (4 months of the year) because it is unsafe to see others due to the risk of catching something.

• Support groups are often diagnosis based. Families with medically complex children are often without a diagnosis, or have multiple diagnoses making it challenging to find a support group that fits their situation.

• Challenges with respite hinder the opportunity for families to connect in person with others.

• Parents feel they can no longer relate to social networks that were established prior to having a child/children with medical complexities.

Please be advised that content in this documentary may trigger an emotional response.

• Some hospitals and rehabilitation centers in Canada and the United States are realizing that families raising children with medical complexities are highly isolated. In order to deal with this isolation, these centers have created peer mentor programs, support groups and opportunities for families to get out as whole and meet other families who are going through a similar situation.

• In the United States, organizations and programs such as Family Voices, Parent to Parent, and Family to Family provide support to parents by providing information, advocacy for improved policies, building partnerships, and peer-to-peer matching.

• In Canada, there are similar local and provincial initiatives such as the creation of a Peer Support Toolkit, Family Bedside Orientations, Just for Moms/Caregivers, among others.

• Research on caregiver’s isolation indicates that there is an overall high satisfaction with in-person and online peer support. Caregivers suggest that peer support, including workshops and activities assist in reducing isolation, providing a sense of belonging as well as helped them learn and navigate the complex health system.

Akron Children's Hospital (Akron, OH) - Parent Mentor Program

Children's Hospital at London Health Sciences Centre (London, ON) - Paediatric Family Resource Centre

Children's Minnesota (Minnesota, US) - Family to Family

Children's Treatment Network (Toronto, ON) - Families

Family Voices (Albuquerque, NM)

Holland Bloorview Rehabilitation Hospital (Toronto, ON) - Family Events

Holland Bloorview Rehabilitation Hospital (Toronto, ON) - Peer Support Best Practice Toolkit

Missouri Family to Family

Parent to Parent USA

Thames Valley Children's Centre (London, ON) - Just for Moms-Caregivers