Gaps and barriers parents face

What has been done

Quick guides and resources

Inventory of practical information

• Parents experience grief, anxiety, depression, and Post Traumatic Stress Disorder related to providing care for their child/children with medical complexities.

• Parents are frequently exposed to triggers that bring back memories of trauma related to past medical interventions, medical decline, and care needs for their child.

• Parents experience exhaustion because they are required to be hyper-vigilant with their child and are often sleep deprived.

• There is a lack of awareness, sensitivity and compassion towards parents who experience mental health challenges. The parent’s exposure to the trauma that their child has experienced is frequently a contributing factor

• Community based therapeutic supports have long waitlists, and the costs associated to fee for service support are out of reach financially for most families.

• Parents have difficulty in recruiting qualified personnel with experience in working with families with children with medical complexities. This results in minimal time for parents to focus on self-care.

• Parents are experiencing chronic health issues as a result of being in a caregiver role, 24 hours a day.

• Accessing physical support therapies such as massage therapy, physiotherapy, or other self-care supports can be challenging due to lack of time and respite, and the cost associated.

How to use the Trauma Stories documentary in your centers for educational and capacity building purposes 

• The literature on personal health of caregivers indicates that these individuals experience immense emotional and physical health difficulties as a result of caring for a child with complex medical needs. These caregivers tend to require frequent use of social work services.  Due to these high needs and challenges, it is appropriate for non-licensed staff such as patient navigators to provide additional support for families. Also, siblings of children with medical complexities (CMC) should also be involved in support groups and other similar interventions. There are recommendations of evidence-based interventions which have been proven to be effective for reducing caregiver stress and improving their mental and physical health.

• A number of organizations and initiatives are working together to improve parent/family caregiver’s experience. An extensive literature review and environmental scan conducted by the Change Foundation through the Caregiver Resource Hub provides families with a list of local, provincial, national and international organizations and their collaborative initiatives between caregivers and providers. These initiatives were done in the hospital settings, the home and community care settings and primary care settings.

• Some of these initiatives include appropriate referrals to support organizations, respite programs and self-directed funding models that also prioritize caregiver needs assessments. In their efforts to support caregivers proactively, before social isolation and possible burnouts, various considerations to put in practice that characterize successful approaches were shared such as Family Resource Centers and Carer passports to increase identification and support provided to caregivers.

• Doctors of BC developed a physician Tool Kit which provides practical suggestions for physicians to: identify caregivers, involve caregivers in patient care, monitor the health of caregivers, and provide information and support to caregivers. Carers toolkit was also created by NHS England and its partners to also identify caregivers and provide support and they include a template Memorandum of understanding to facilitate a collaborative approach between community partners.

• Powerful tools for Caregivers was launched as an evidence based self-care education program for family caregivers and the Regroupement des aidants naturels du Québec developed a “boîte à outils” (Toolbox) to raise awareness in regards to caregivers needs, rights and overall wellbeing as well as participate in research initiatives in Québec.

• Sharing Your Story: A Guide for Parents and Caregivers (Partager Votre Histore: Guide Pour les Parents et les Aidants) was developed to provide parents and caregivers with the tools to help them when they have to talk about their child's medical condition or their family's story.

Quick guides and resources

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