Knowledge and Skills that We Rarely Talk About

I have been thinking a lot about knowledge, skills and education lately and how we rarely talk about the things that are actually important to me as a caregiver of a child with medical complexities. 

• Why is it that the most important skills I needed to learn had to be self-taught? AND
• Why do healthcare providers/researchers/administrators not learn about these topics when they going through their formal education?

Skills I need to be a Caregiver (but was never taught)

Information Management

• How to devise a system to track and manage information about patient history, symptoms, health contacts and government/non-government supports.

Communication

• How to summarize patient history and symptoms in a way that will make sense to a doctor in their specific area of practice: i.e. when in emergency vs talking to a family doctor vs talking to a specialist.  
• How to communicate on behalf of a child and adjust over time to allow for increased autonomy as the child ages to allow the child more autonomy (if applicable)
• How to talk about pain in a way that encourages pain validation and action from health teams

Navigation and Advocacy

• Accessing adequate levels of care in while in the home, at school, before and after school and during summer camp.
• Working with multiple systems to build programs to ensure consistency of care
• Provincial Health Ministry: Out of country care and home care, nursing and training for in-school supports
• Local school board: other in-school supports
• Municipal: support for the childcare system

Education and Training

• Creating education and training materials from scratch to ensure consistency of care between home, school, childcare and summer programs

Other

• Self-care skills that are actually be feasible (a spa-weekend is likely not an option for a parent of a medically complex child)
• What to pack in your emergency 'go-bag'
• Budgeting and finance (how to pay for out of pocket medical expenses)
• How to function on 4 hours of sleep every night

Things I Wish Healthcare Providers/Researchers/Administrators Learned As Part of their Training

I wish that individuals working in the healthcare space were required to take a 'Caregiver 101' course to review common challenges caregivers face before engaging with them. That way studies, programs and services could be designed to go beyond just scratching the surface.  

Here are some topics off the top of my head:

Accessing Care

What does it feel like to:

• Have difficulty accessing or no access to a family doctor
• Wait for months for a referral to a specialist
• Wait for 10 hours with a sick child in emergency as regular occurrence

Time Traps

What does it feel like to spend hours:

• Fill out hundreds of forms with the same questions in an attempt access support programs
• Spend dozen of hours sourcing, ordering, organizing, managing and applying for reimbursements for medical equipment and supplies. 
• Navigate and advocate for consistency of care within the disjointed systems that oversee home care, childcare, school and summer programs.

Financial

How being the caregiver of a child with a disability/chronic condition impacts:

• Your ability to keep a job
• Your ability to pay for basic living expenses (housing, utilities, food)
• Your ability to pay for life sustaining medical equipment/supplies that are not covered by the government (in our case this figure is $25,000/year)

Emotional Tolls

What it feels like to:

• Experience PTSD because of gaslighting/negative health experiences within our health systems.
• Not have access to mental health supports from professionals who are actually trained in supporting parents of children with medical complexities/disability/chronic conditions
• Have to put on a 'mask' with colleagues and acquaintances when they ask "How was your weekend" or "What's new with you?"
• Have to perform daily nursing tasks without a nursing license or compensation.

Engaging Caregivers in Research

Making sure you consider:

• The difference in perspectives families can bring depending on where they are in their health journey
• The level of science, health and research literacy someone has
• Readiness for engagement (is the caregiver partner sharing open or closed wounds?)
• Harms that can occur as a result of research engagement