Parenting On The Outside

Thirteen years into parenthood, I'll admit I don't give World Prematurity Day much of a thought. I really can't explain why; I think there came a point in life where my eyes shifted forward in focus with life. If you know me, you know I'm someone who has a difficult time sitting still. So much of life demands of me to be in the now be it work or family.

Reading Dr. Jen Gunter's article today in the New York Times really forced me to stop for a moment and honestly have a good cry. 

I used to work at a high-end kids boutique that had a secondary location a few doors down devoted to baby stuff. One day we were all discussing the fact that the baby store made three times the amount of sales than the kids shop. The question was raised as to why this was the way it was. An employees response has stuck with me for so many years. In the baby store, you're selling the dream while in the kids shop it's a parental view of "how much is this going to set me back?". I mean, I get it! Life functions in this linear sort of format as to how our expectations are to go when it comes to parenthood. 

When life takes a different trajectory, the understanding of others who have been raised on certain parameters in their definition of social norms goes straight out the window. I'm going to be real with you, this is one reason why I've developed a hatred for baby showers. Not at all because I for some reason mourn what might have been. My life given its complexities is pretty damn amazing. My kid is incredible. It's how you get spoken to when you bring with you a small babe to someone's shower. I remember being asked about our medical experiences, then in the same breath that person cracking what they thought was a joke. "So what sort of drugs were you smoking when you were pregnant?". I failed to see the humor. 

Subsequent showers were forever a reminder that in the eyes of others that in their mind, I had a faulty experience with my entry into motherhood. While some details of motherhood weren't without their complexities, I still had things I could contribute as a support to new moms. Any attempts to offer advice were always met with looks of sympathy in my direction which spoke little other than, "Awe, she tries so hard to be one of us.".

While many preemies have relatively uncomplicated outcomes, I find myself reminded today that ongoing or "chronic" complexity has not yet arrived in the dialogues of many people. We still see health as a binary entity where you are either sick or you are well. There is no middle ground and that can be terribly isolating. When someone's life encamps somewhere in the middle, we don't know what to say or do. In many cases it's just easier to make a hasty escape.

Life is complicated, messy, beautiful and in some cases tragic. When we hesitate to acknowledge all of the in-betweens and forget to hold space for one another, we are missing out on a full understanding of what it means to be human. As the good Doc said in the article linked above, we need to get better at talking about all the angles when it comes to prematurity. 

Because this is where it starts. Step one. You either become a part of the community of support, or you watch from the sidelines and miss time with some amazing kids. 

Parenting Roles in Complex Care: A Review

Having lived with my family in three provinces, we experienced three separate definitions of home care. One province we didn't qualify at all, one we had a schedule of evening help with no added paperwork for me. For the last province, we qualified for one night a week which was out of pocket, then reimbursed. 

When we do not qualify, or services are not available, I like many other Canadian families take on the tasks of medical care. For many depending on the medical issue, they work a 24 hour day keeping their children stabilized. A lot of tasks require focus and attention over regular schedules which can often extend well into the night. Supports can be all the more complex depending on family dynamic as not everyone is ready or willing to rally around you.

According to a recent opinion paper in JAMA, caregivers spend an average of up to 52 hours a week providing health care at home and even more so in some cases depending on the level of medical complexity. What complicates the situation all the more is creating a sustainable family system where at least one parent needs to remain employed to maintain not only income flow but to keep insurance as well. There's a lot of mounting evidence that many caregivers given their daily workload, experience severe burnout symptoms, depression and anxiety.

If we were to consider work safety standards in really any job, (not just nursing) overwork is a subject that would raise concern over the threat it poses to injuring someone, even death. This is why companies with high stress work tasks put together safety regulations to ensure things like a limit on work hours. The overall pitch with home care is that if we are ensure the overall health of parents and children, we need to set work standards for families.

An initial suggestion of setting manageable work hours for parents to me, feels like a meaningful goal to develop. Given the health risks involved with prolonged stresses, I'm inclined to agree. What would be important however for every family would be considering the circumstances of the individual family in front of you. While there are many commonalities between families, everyone brings a little something to the table. 

Families must be involved in the crafting of those work hours. This comes with the broad acknowledgement that each family unit is unique and comes with their own sets of needs and feelings about having other people in their home. What might work for some families, might not work for another family for a number of reasons. In my own opinion, we need to quit setting metrics of assessment for families based on a model that all family units function in exactly the same fashion.

Creating systems to measure quality of care; to track adverse events in both range and frequency would ensure an understanding of the extent of any potential challenges. I would also add myself, measures to validate longitudinal function of such a collaborative system in home care. We have been patching old models of care for so long, it's worth investing in examining if a new model will stand the test of time.

If we are to create a system with the future in mind, we need to fund the assurance of high-quality home care that creates efficient pathways for everyone to work together. Facilitating incentives for people to be led into such future careers would ensure sustainability of such programs long-term.

Lastly the authors mention that we need to find ways to have more authentic conversations with families about what are as they state, "informed and reasonable expectations for parental care". As a parent myself I can say the expectations of what I am capable of in the eyes of others has fallen in a range from:

a) more desperate than I actually am.

to

b) someone who needs no sleep and is emotionally fine with that.

The authors state that in the end, this needs to be a conversation that is ongoing and open to change should circumstances necessitate the need for them to. 

For me, some of the motivation in facilitating such conversations would be in seeing the need to make them as Victor Montori calls them, "unhurried". In the end, we have seen enough in literature to say that the medical care workload for many parents is at a level that for any paid employee would be considered unsafe. There is no amount of resilience training, yoga or pedicures that will remedy this safety issue. We need to collaborate with families to build sustainable and safe systems of support policies that ensure optimal outcomes for parents and their children.