Beyond parenthood: Chronicling the experience of family caregivers

Staff Perspective

Karen Sappleton, Manager, Child & Family-Centred Care & Health Equity Child and Family Relations, Family Centre, Interpreter Services Department, Centre for Innovation & Excellence in Child & Family-Centred Care The Hospital for Sick Children

Patients, parents and caregivers are partners in promoting optimal health, maximizing patient experience, ensuring patient safety, and achieving health equity. Although the child is at the core of all that we do, families and caregivers are central to the therapeutic relationship between the patients, families and healthcare providers, as well as the enhancement of their overall experience. At the Centre for Innovation & Excellence in Child and Family-Centred Care at SickKids, we realize how valuable caregivers’ experiences are to how we care for our patients, conduct research, educate ourselves and run our organization.

We know that the child’s hospital stay or visits are just a very small piece of their lives. We also recognize that families and caregivers provide care, support and love to their children 24/7, 365 days a year. It is with this knowledge and awareness of families and caregivers as integral partners in the care of these children that we can act with compassion, integrity, excellence, collaboration and innovation.

With November marking National Family Caregivers Month, we’ve gathered some personal caregiving experiences from our SickKids parents.

Caregiver Perspectives

Wendy Janssen, parent

Being a parent is rewarding every day, but parenting a SickKids patient is even more so. Every milestone that is met—a new mark made on the growth chart, a friend made, a goal scored, or even a new book read—is incredibly gratifying. Seeing my son learning new things and interacting with others brings me great joy, and being a SickKids patient enhances this joy. After spending a significant amount of time in the hospital and dealing with so much uncertainty, when my son achieves anything, it's monumental. I'm always so proud of him. Each birthday that arrives is a tremendous reason to celebrate and I'm grateful for each day that I have with him. The amount of happiness he brings is amazing.

With parenting comes challenges, and they are definitely different with a SickKids patient. The biggest one for me is the concern for his future. Not knowing how, when, or if his health will change is on my mind frequently, and creates some anxiety. Another challenge is ensuring I treat him equally to my other children. I think it's impossible to do this perfectly, but I feel it's important to put the effort into making life as normal as possible for him. Having a healthy child get sick or injured can be worrying enough, but with a SickKids patient that anxiety and stress is intensified. I find myself questioning every new symptom or minor change that occurs with him, and spending time looking for information and answers. This is something I wouldn't do to such an extreme with my other children. When I need to go to the local hospital or walk-in clinic, it can be overwhelming. I need to be the expert on my son’s condition because I am responsible for relaying all his history and information about his medical condition to the health-care providers. This is a task I don't mind doing, but feel that I'm not well-equipped for. It would be easy to miss an important detail when I'm under stress and not thinking clearly with the worry of what could be going on with his health.

As a parent, it is my role to look out for my child's medical needs. Advocating for my son is critical to ensuring all his needs are met. By being actively involved in my son's care, I can make informed decisions and work as a team with health-care staff and other providers. It's vital to keep good, open communication with all persons involved in his care and get questions or concerns addressed. This allows me to have the knowledge I need so I can watch for any changes that might occur with his health, which in turn increases his safety.

Sitara de Gagne, parent

I've come to realize that being a full-time caregiver to your child with chronic or life threatening illness is a very unique experience. The journey is beyond exhausting. You hit heartbreaking, earth-shattering lows, and catch moments of joy and happiness that you may have missed if you weren't walking this path.

Being a parent caregiver you somehow are both patient and observer. You feel in a cellular way what your child is going through. You are such an intimate part, an extension of them really. And yet at the same time you are on the outside as medical things just seem to happen. It's often like an out-of-body experience. Watching things in slow motion is frightening and you are powerless.

You are simultaneously a mom and the living medical records of your child. Continuity of care and treatment weighs heavily on your shoulders. You are your child's protector, but have to become their advocate in ways and to depths that you simply cannot imagine until you're doing the job. And yes, sometimes it is a painstakingly hard job. It is a job that no one would apply for if you read the full job description and yet it's a job I would not and cannot stop.

Deanne Mitchell, parent

Our daughter Emmy is halfway through her scheduled two years of chemotherapy for a rare desmoid tumour. We’re our daughter’s cheerleader and consoler. There’s much to cheer about. The tumour is shrinking. Emmy loves her oncology team and takes her medicine without a fight. She generally has a lot of energy. There’s also much to console. Chemo can leave Emmy nauseous and lethargic. She loves extra cuddles.

For me personally, the isolation is the hardest part about being a caregiver. Family and friends are as supportive as they can be, but their actual understanding of your plight only goes so far. Unless they’ve been through similar circumstances, they just don’t get it. Which is why even though I dread weekly clinic visits, I also feel relieved to be surrounded by families who understand the constant worry, whirlwind of appointments, wait times, non-existent sleep, side effects of chemo, and lately, the tantrums about why she can’t be with her friends at preschool today.

Now a huge task lies in front of us: educating Emmy about her tumour. She starts kindergarten next fall and we want to arm her with empowering answers to the inevitable questions from kids about the scar on her face. She’s a true warrior and should be seen as such.

Karen Sansom, parent

Being a caregiver for my son means being the best mum I can possibly be. Having an ill child requires double the patience, double the commitment and double the strength to carry on. Like most mothers, there isn’t anything in the world I wouldn’t do for my kids. I protect them, care for them and love them as best I can. And with my youngest son, it also means being his advocate and his voice. Having dealt with multiple departments and hospitals, I’ve learned that speaking up benefits all parties involved—especially my son!  No one knows my son like I do. I enjoy collaborating and working with medical staff to ensure he receives the best health care available. I feel I’ve contributed to his overall health and treatments. I feel like I am part of the team.  

I involve myself in all aspects of his life; I educate myself and I use my voice! I think family members should be involved just as much as doctors with their child’s care if not more.  And sometimes it’s not easy being involved. Controlling your emotions can be one of the biggest challenges you face. I’ve learned that I must try to remain calm, focused and not be emotionally charged. Keeping an objective point of view and not allowing your emotions to take over is a continuous balancing act. In the end, I love being involved with my son’s care. It helps give me the illusion of control over a situation I really don’t have any control over. But I know in my heart that I’ve helped make him happier and healthier. I know I’ve made a difference.

The Centre for Innovation & Excellence in Child and Family-Centred Care is a collaborative initiative between patients, families and staff to identify best practices in providing family-centred care. The family-centred model recognizes that families are central to the patient’s life, placing them at the core of health care with their child.