Trends in Palliative Care Research 2023; Special Edition 04

Commentary By:

Shant Attarmigir – Parent, Canada – Shant is a father of two, during the day he works in the construction safety industry. His list of fatherly achievements include: leading both kids to become summer reading stars every year since they were born and teaching the kids (and mom) both Armenian and ASL. His kids will tell you he makes the best: hot chocolate, pillow forts and yogurt parfaits. He also receives honourable mention from his daughter for his creative weekend hairstyling services.

Feature Article

Ogourtsova, T., O’Donnell, M. E., Chung, D., Gavin, F., Bogossian, A., & Majnemer, A. (2021). Fathers Matter: Enhancing Healthcare Experiences Among Fathers of Children with Developmental Disabilities. Frontiers in Rehabilitation Sciences, 2.


Of the many topics discussed during November’s Journal Club entry, I want to focus on one section from Ogourtsova’s analysis of fathers’ involvement in their children’s healthcare by healthcare professionals. To paraphrase this section:

From the fathers’ perspective, most participants in the study reported they were Often-to-Always involved in the healthcare of their child, (2021, P.4) however, from the healthcare professionals’ perspective, almost all viewed fathers as being only Slightly-to-Moderately involved in activities required for the healthcare of their child. (2021, P4)
Before advancing further into my commentary on the conflicting perceptions of the father’s role in the healthcare setting, it is important to make an important distinction: the role of the father has evolved significantly in recent generations with the loosening of gender roles in our society, allowing either, or both, mother and father to be the working parent. In the case of this article, I would suggest using a term like “primary earner” rather than “father” and “primary caregiver” rather than “mother”. We shouldn’t equate the unavailability of one parent to take part in research or appointments to only the father, as it is usually the working parent who falls into this category, whether they are the mother or father.
Regarding the conflicting narrative in Ogourtsova’s article between the self-appraisal and the appraisal by HCP of fathers’ involvement, where is the disconnection between these two assessments? In my experience as a father and a primary earner, some challenges to consider are:

– The times and dates available to be involved in the research collecting this data is usually limited to business hours and days, making it hard for the primary earner to attend. The same applies to medical appointments, as healthcare offices are often only open during normal work hours.
– Care for children, complex or not, requires consistent representation – a single point of contact between all healthcare professionals. This means that most of them meet, see, and know only one of the parents (in most cases it is not the father).
– To allow the time and ability for the primary caregiver to attend to the child in need, which can take up a large portion of the day, the other parent usually needs to take on home or supporting responsibilities – these don’t seem to be considered in the research, though they are equally as important and should count as involvement.
– There are many planning, advocacy, and treatment activities that I participate in that are invisible to HCP, such as completing my child’s disability paperwork, attending webinars on and managing my son’s disability investment accounts, signing up and attending sporting activities, and learning and integrating sign language in the home to help empower my son.
It seems the ways in which a father’s involvement and caring are measured is too narrow – the medical and research community should take a step back, to develop tools and approaches geared toward the modern father/primary earner.
As the primary earner, I leave the house at 6:00am and return at 4:00pm Monday to Friday, and sometimes Saturdays. However, as soon as I get home I gladly take over kid-duty, allowing some reprieve to mom and grandma who have been with the kids (2-year-old boy with complex needs, 4-year-old daughter without) all day. I take my kids to their evening activities and do bath and bedtime with them. I cherish this time to move, read, play, and connect. Most days the steam train of activity chugs along into the night with a quiet house around 9pm, just in time for a quick chat with my wife about the day to come and we’re off to bed. On the weekends, I do my share of the work – fill out the forms, send the emails, take the kids to their activities, clean the house, repair whatever needs it, do groceries, cook, and the list goes on. And I’m always on the lookout for activities and events I can take my children to that will help expand their social, motor, emotional, and cultural abilities.
However, the challenge lies in taking part in appointments, surveys, groups, and anything else medical, research, or otherwise, that are almost always scheduled during normal work times and days. Due to the crux of being the primary earner, I cannot take part in these activities unless I book the time off, or like today, when I am home sick and can afford to put in some extra work where it’s needed.
Despite all this, is it fair to be perceived through the healthcare professional’s lens as being only Slightly-to-Moderately involved in the healthcare of my kids? I am a dedicated, loving, involved father. Ensuring my children’s continued success is not limited to what can be done between the hours of 9am and 5pm, and, in my opinion, the activities required for their healthcare go far beyond the medical.

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