Trying to Make Sense of My Time in Kuwait
If I am honest, I am having a harder than normal time processing, conceptualizing, and reckoning with my time spent in Kuwait. I could take the easy way out and blame it on the runoff effects of getting Covid-19 during my stay. But, I think that would be disingenuous and I would imagine a similar dilemma even if I had not become ill.
Often, I try to wrap these blog posts up into neat little bows, with a story at the bookends, and a takeaway message. I'm not sure what that would be in this case. That is not to say that I did not learn a lot or enjoy my time. In fact, quite the opposite is true—I am extremely grateful to have had the opportunity to visit Kuwait and collaborate with the team at KACCH & BACCH.
My true dilemma, I believe, is reconciling the work that I did with the nature of my project. I have set out to explore the ways in which different countries and cultures support children and families before, during, and after the death of a child. And, yet, in Kuwait, I did not interact with many families. Or many children who were likely to have a shortened life. And it became apparent that there was not one overarching culture to examine either. So my whole premise was thrown off. With all of that said, I do think that there is a lot to learn and share from my short time in Kuwait.
Culture
According to recent data, 60% of Kuwait's population is made up of expats. So most practices, customs, and even perspectives are dependent on the individual's/family's nationality. And within the Kuwaiti population, practices vary greatly.
There are differences in the primary language spoken, religions practiced (or not), job opportunities, and salaries earned in those positions. During my brief stay, I was told more in-depth about the disparities in work that are available to individuals and how it can often be related to nationality. For example, there are a large number of expats in Kuwait who come from India and the Philippines. Most of these individuals work in service industries: retail workers, home helpers, taxi drivers, restaurant servers, etc. On the other hand, most Kuwaiti individuals, particularly men, will be in managerial roles, lead organizations, or own their own businesses. These differences stem from governmental support (which I will touch on more later) which is afforded to Kuwait citizens but not expats, regardless of the amount of time they have spent in the country. Without a Kuwaiti visa, expats are unable to own property. They have higher loan rates, and do not receive the governmental benefits to support living in the country as the citizens do.
But despite these differences and the diversity present, there are several laws and customs in place in the country that create a national culture, even if not everyone agrees with the basis for the rules. In Kuwait, pediatric care ends at the age of 12, but medical consent is not able to be given until the age of 21. The person providing that consent before that point, too, isn't always a parent. The head decision-maker and individual in charge can vary depending on family structure and culture and may be at times a grandfather, elder uncle, or another familial authority figure. But during this time, while the child, between the ages of 12-20, stays in an adult ward, they must be accompanied by a caregiver. While in pediatric care, the patient has to be accompanied (for overnight stays) by a female caregiver. There are no male nurses allowed to work in pediatric wards.
As stated before, at the age of 12, the child goes to adult care, which is segregated into gendered wards. So, at that point, the child must be accompanied by a caregiver of the same gender.
Families
These rules and regulations can be an added challenge for expat families who often don't have the same type and level of family and community support around them. So, for example, if a child is ill and needs to be in the hospital, the father has to work, and the mother has other children to care for, they have to make some arrangement work. Sometimes that means getting a neighbor "aunty" to look after the siblings or to stay in the hospital, or at other times it requires hiring a nanny to be in the hospital with the sick child.
Returning to my point above that I didn't interact with many families during my time in Kuwait: This mostly was related to the fact that almost every patient I met had a hired nanny/caretaker at their bedside rather than a parent. This applied to both Kuwaiti citizens and expat patients, but out of the handful of parents that I did meet at the bedside, all were from expat families. Now, this obviously is not to say that no Kuwaiti parents stay with their child. This came from a very short-term observation and an extremely small sample size.
The visiting hours in most of the hospitals are from 4-7 p.m., which applies to larger groups of visitors such as extended family and big groups of siblings. If the second parent who is not accompanying the child wants to be present, they are able to be in the hospital outside of sleeping hours. However, the one difference to this is the PICU. Unlike in other countries that I have visited where the PICU has the most liberal visiting policy, in Kuwait, parents are not able to stay over in the ward and have just a few hours for visiting during the day.
I was told that when Kuwaiti families have a child with a disability or serious illness they will get support from the government—which is a fantastic program, one I personally believe should be more widely available around the world. These families are given an allowance to help care for their child and pay for any necessary expenses. Many families use that allowance to pay for a nanny to help look after the child with added medical needs.
This assistance comes on top of the fact that their medical care is free of charge as citizens. However, while the child is in the hospital, for all but one care center, those payments are put on hold. I wasn't quite able to determine the cause of this, but I also learned that parents are able to decline discharge for their child from the hospital.
Not for every family, but for some, there still exists some amount of shame in having a child with an illness or a disability. For certain families, that is the reason they prefer for the child to stay longer in the hospital. And, for others, it is out of fear of their ability to adequately and appropriately care for the child's needs at home. And, many, I would venture to say but have not confirmed, it is a mix of both of these and numerous other factors.
During my time, I also learned about a really interesting phenomenon that is in the process of being researched further at the moment: risk feeding. "'Risk feeding' is one of several terms used to describe a situation when a person continues to eat or drink orally,
despite the known risk of aspiration or choking." (Radford et al. (2020), DOI:10.1044/2020_PERSP-19-00032).)
In pediatric palliative care, this often refers to when a parent or caregiver continues to feed their child despite knowing the potential harms and consequences. With the connection that food has to showing love and care in many cultures and how it can often be highly representative and symbolic of familial (particularly maternal) nurturing, the cause of this is relatively easy to see. In speaking with a clinical dietician turned clinical services manager, she shared with me the prevalence of this practice at the end of life for pediatric hospice and oncology patients that she has worked with in Kuwait. This clearly highlights that not all families are resistant to being involved in the caretaking of their child in a direct and intimate manner. It is my hypothesis that even those who are unable to bring themselves to that point have a desire but are held back by some level of fear.
For the families that are involved, though, I remarked that the involvement and interaction tend to run deep and are more long-term than I noticed in other settings. Seeing this made me a bit envious that this type of connection and relationship maintenance wasn't something done in the US. The benefit offered was beyond clear, both for the families, as well as the amazing KACCH & BACCH workers, who could create these bonds while still maintaining the important and necessary professional and personal boundaries needed to do their work and take care of themselves. Many families connect with hospital and support staff from KACCH & BACCH through messaging platforms like WhatsApp and maintain those connections even after their child is no longer ill or passes away. This combats a major issue many bereaved parents and parents of children with long-term, serious illnesses who recover face: they create relationships with a whole network of people who become part of their daily lives, and one day that just ends. It is a form of loss, not often recognized. But, I noticed in Kuwait that some families were able to circumvent this through a continued bond, that was encouraged by the organization who continued to invite families (who indicated a desire for this) to events and activities even after the death of their child.
The families that use the supports available seem to make full use of them. I didn't notice much of a middle ground.
Children
In general, I noticed that the children in the hospitals tended to stay much longer than they do for similar diagnoses in the US. This isn't something that I paid as much attention to in my other project countries, because the stay lengths didn't stand out as unique to me, one way or the other, coming from the US. So, without being certain, I would also guess that the length of stay in Kuwait for the children was longer than in the other countries where I have been too. An example that illustrates this is during one of my hospital visits, I asked how long patients tend to stay at that particular center. The worker responded that the stays there tend to be shorter than at the other hospital and children usually stay about 2-3 weeks. to put this into perspective, with data, I found a study that published data from 2017 demonstrating that the average length of stay in children's hospitals for medical stays was 55.4 hours, for surgical stays, it was 70.0 hours, and overall it was 59.3 hours.
It was also apparent that the patient population in the hospitals was different, in terms of illnesses/diseases/diagnoses, from what I noticed in other places, again, particularly in the US. There are many more genetic diseases among the pediatric population in Kuwait, in general. This was both an observation that I made and something that was confirmed independently by many workers for the various hospitals and from KACCH & BACCH. There were many more patients with Spinal Muscular Atrophy than I would have anticipated and more patients with cerebral palsy spending significant time in the hospital, to name two examples. Despite the higher prevalence, though, the country does not really have disease-specific support groups or assistance organizations for the patients and their families.
The hospitals also had a number of children in their care that I met who did not have medical reasons for being there. From what I have been told, there isn't a foster care or adoption system in place in the country for children who are not Kuwaiti citizens, but whose caregivers are unable to look after them for whatever reason. So these children end up living in the hospital. Similarly, Kuwait does not yet have a well-developed system for dealing with cases of child abuse. So, many times those children will live in hospitals too while healing from their injuries and determining where they should be cared for. Some will be placed with another family member, others will continue to live at the hospital.
Role of the Government
It became apparent to me pretty quickly that the government in Kuwait plays a pretty large role in the way that care is given and how families are supported and whether or not they feel supported. I would venture to say that out of all of the places that I have been so far, the role that the government has on this topic has been by far the most prominent in Kuwait, whereas in other countries it felt more like a background player.
Right now, the government is trying to segregate all of the hospitals so that some serve only Kuwait citizens and the others are only for expats. The hospitals for the citizens would be free of charge, and for expats the care would be paid for by the families. Most expat families have health insurance to defray some of these costs, but it was reported that they can still be quite high even with insurance. Further, I learned that certain medicines and procedures are reserved only for Kuwait citizens (again without cost), and expats are only able to access lower-tier prescriptions. The highest-quality, name-brand, and hard-to-access pharmaceuticals will only go to Kuwait citizens.
However, the services and facilities managed by KACCH & BACCH, the non-profit that I worked with during my time in Kuwait, were available to all patients and families without discrimination and free of charge for everyone. This was able to be done, though, because the amazing teams of play leaders and child life specialists who manned the playrooms in the hospitals were not part of the ministry of health. So, in effect, they were all guests in the hospitals, which had an impact on their work. They were not involved in the team meetings with the nurses and doctors in the wards about the care of the children in the service. They had to ask for permission for all that they wanted to do. And, they had to do a lot of advocacy for their role and work, while making sure not to overstep boundaries.
KACCH & BACCH seemed to have a slightly different culture and environmental feel to the rest of the spaces. They really valued interdisciplinary work, more so than I have felt in other settings where I have worked. It was evident that they truly felt—rather than just said—the client they served was the whole family. When working with a child, they made sure to consider their siblings, parents, home situation, and all aspects of their life that included and excluded their illness. This extended to working to arrange the chance for whole families to have new opportunities or experiences that they never had before or maybe wouldn't have been able to do without the assistance. In some instances, this was something that seemed relatively small like using the hydrotherapy pool to allow the whole family to go swimming together because they never had the chance to before. And, in other cases, they arranged more extravagant outings and activities for children and their families to fulfill their wishes and desires, as their disease progressed.
Abundance and deficits
Kuwait has the most advanced and ample facilities and services in all of the countries that I have visited. Here is a non-comprehensive list of some of the facilities and services that are available to the children and families that they serve at KACCH & BACCH:
private patient rooms with beds for the parents as well as private baths attached
care available as inpatient, daycare, outreach, and home services
aqua-therapy
physiotherapy
occupational therapy
a school program
music therapy
catering service
transport service
multiple playrooms with spaces designated for "messy play"
gaming rooms
pottery room
outdoor play spaces
sensory garden
observatory
theater that can project movies (also the chairs fold up to look like tulips)
indoor aquarium/fishtank
library
whimsical "magic carpet" ramp that is wheelchair accessible and can transport families across the campus
quiet, solitary chambers
secluded mourning room
chalet/"beach house" style apartments with a waterfront view
wheelchair-accessible ferris wheel
more!
With all of this available, I was a bit shocked when I noticed that the grounds weren't filled with energy from visiting families to make use of the facilities. Actually, most days that I was around, maybe one child/family visited. I wondered, on my last day, if this had to do with these facilities being associated with a pediatric hospice and the stigma that can be associated with that word at times. In fact, there is actually no word in Arabic for hospice. But, to my surprise, I was reassured that there really isn't that sentiment of shame or unease with an explanation of the term in Kuwait. One explanation for the lower use of the services that I was told was the location of the facility. The campus is about 15 km (8.5 mi) from Kuwait City, and about 20 km (13 mi) from the airport, to offer a point of reference. Coming from the US, that does not seem like a far distance to me, but I don't have the experience of growing up in a country the size of Kuwait.
In general, I got the sense that for some families and some cases, the support was there, and for others, it was not, or at least it was much harder to come by. There was some basic level of care, support, and assistance that it seemed was available for all families, though. These were programs, services, or aspects that families in other countries have told me directly that they wished they had during the time of their child's illness.
To speak a bit frankly, at times in Kuwait, it seemed like the resources were available, but, for whatever reason, they seem to be not being used or like they were being exploited at least some noticeable portion of the time, taking the long-term care of children in hospitals who were well enough to be at home as an example. However, it also is true that while some families may have rejected help or manipulated the assistance offered, other families in the same system, in the same country, due to nationality, struggle with hospital bills, caretaking responsibilities, finding community, feeling supported, etc.
My Own Reflections
Personally, it is hard to comprehend how these programs and supports would be going unused when other families I have met elsewhere in the world couldn't even dream of something so all-encompassing to assist them during their times of need. Rather, they wished for a chair that could recline to be in while accompanying their child during long hospital stays overnight or hot water in the patient rooms so they didn't have to use an electric kettle to warm water to shower their sick child.
All of this makes it difficult for me to envision what an ideal path forward for offering support would be and how it would look. These programs and services are not free. Unfortunately, they cost huge amounts of money, generally speaking. The way the world works, to get the backing needed to institute more impressive programs like what I saw in Kuwait, evidence would need to exist showing that it has a benefit and is being utilized enough to justify the expense. Would that be possible? I don't know. And, I’m not sure if there is an easy answer to that question.
I don't really have a tidy way to end this blog post. There is still a lot that I am left pondering and questioning. As I said above, I don't have answers, messages, or motivating words to offer. I guess that I just have to leave it there for now.
If you want to stay up to date on my blog, consider subscribing to be notified when I post!
Comments