In today's society, our identities are often directly related to what we do for 'work,' and for those who have left traditional employment to care for a loved one, they often tell people that they are a 'caregiver' so others can understand what their 'job' is.
For me however, I did not start identifying with the term 'caregiver' until January 2024. This is because in the paediatric health system, all of the unpaid nursing, care coordination, navigation and advocating I did was expected of me within my role as a mother. In fact, this was explicitly communicated to me by hospital staff early on in my parenting journey.
My child was born prematurely and received life-saving surgery at 36 hours old. After attending 17 health consults in 10 days we received 30 mins of training on colostomy care and were sent home. I remember feeling completely lost. I was not connected to home care at the time (a mistake on the hospital's part) and even if I was, there was no existing paediatric ostomy care support within the home care system at the time.
While in the neonatal intensive care unit, I was told that my child's ostomy bag should stay on for at least 2-3 days, but once discharged, I found that it would fall off as many as 3 times a day because the quality of the output would melt the adhesive. To make matters worse, the cost of a bag was $20 so changing it 3 times meant that I could be paying up to $1,800 per month!
One day, I noticed my child was very irritable and was grabbing at the stoma. I took a closer look and realized that the stoma was bleeding. I called the wound-ostomy nurse at the hospital and she said "Why are you calling me? This is a basic parenting problem -just take your child's hand away from the stoma." When I asked if there might be different product I could try that might help the colostomy bag stay on longer I was told "all the products are the same." Shortly afterwards, that nurse retired and there was no one else trained in paediatric wound-ostomy care at the hospital that I could call for help.
I remember feeling so angry. I had read all the baby books and if this was a basic parenting issue, why were there no chapters about ostomy care or bleeding stomas? For the next 13 years I never once thought of myself as a caregiver, despite performing complicated nursing tasks, summarizing my child's heath status and symptoms for discussion during rounds in the inpatient ward or suggesting possible next steps for management when I saw that the health team was at a loss for what to do next.
I still did not fully identify with the term 'caregiver' when I was invited to speak at the Canadian Caregiving Summit in November 2023, and when I attended the Ontario Caregiving Organization's Partner's in Care Roundtable event in February 2024, I remember feeling absolutely SHOCKED that the main topic of discussion was including caregivers in healthcare discussions for aging adult patients. How could it be that in the paediatric system so many health decisions were left to the parent, while in the adult system the caregiver was completely ignored?
It appears that neither the paediatric nor the adult health systems properly recognize the role of caregiver. In paediatrics, you are expected to be an unpaid nurse to your child as part of your 'basic parenting role'. In our case, the home care nurses and even the in-patient nurses are not trained in my child's specialized needs so I have to do all of the care. I even have a uniform that I bring to the hospital complete with nursing crocs for when my child is an inpatient. In the adult care system, the extent of of unpaid work caregivers perform is seldom recognized and supports are grossly inadequate -especially for those who require 24/7 care. In both systems, the well-being of caregivers is not prioritized and not tied to the well-being of the patient.
While there is some good work being done to start recognizing caregivers of older adults, I worry that the caregiving aspects of parents who have children with disabilities will remain hidden until we start to explicitly state that these parents are wearing two hats. They are parents AND they are caregivers and parenting is NOT the same as caregiving. Unfortunately, in my family traditional 'parenting' for both my children has to take a backseat during intense caregiving times and I have not been able to access adequate supports to help with this challenge.
I really enjoyed reading a recent publication by Kinga Pozniak and Jan Wilem, Gorter titled Caregiver identity in health research: mothers of children with disabilities share their experiences with partnering on health research studies. In this article, it talks about the extraordinary demands that are placed on parents in today's society (and that is before considering the additional requirements for parents who have a child with a disability).
I appreciate the authors' recognition that the difficulties of having a child with a disability are not because of the child's needs, but rather because of the lack of societal supports. It also recognizes that what these mothers are doing goes well beyond regular caregiving duties.
One way we can help to bring a voice to these parents and the extraordinary caregiving tasks they take on is to highlight their stories through engaging in health research as a parent-partner.
For me, research engagement has been a way to share my voice about my caregiving challenges, which include mental health stresses related to seeing my child in pain or requiring surgery as well as financial stresses related to job loss and the high cost of out of pocket medical expenses. Partnering in health research helps me to better understand and come to terms with my child's condition, it has offered a way to access peer supports and it provides a flexible pathway to earn income to pay for expenses. It also allows me to leverage my professional skills and provides a sense of purpose and a way to form a new identity in a world that links 'who we are' with 'what we do for work.'
Most importantly, research engagement has helped me to disentangle my role as an unpaid nurse/caregiver from my role as a mother. Now that I recognize these as two separate roles, I can begin to better articulate my needs to not only advocate for access to relevant supports, but also to help inform future research, clinical practice and policy development.