If you’re a parent living with sarcoidosis, you probably know how tricky it can be to talk to your child about your condition, to help them cope with your unexpected flare ups and hospitalizations, and to feel like you are being a good enough parent on the days when you feel physically miserable.
This is a common reality for millions of parents who have unpredictable and sometimes debilitating chronic health conditions yet there are surprisingly few resources for us.
I am a parent with severe asthma (and adrenal failure after years of prednisone to treat it) who launched the organization The Art of Parenting While Sick to provide free tools, tips, and scripts for parents with lifelong health conditions and the clinicians and foundations who support them.
Earlier this year, I conducted a survey in partnership with the European Lung Foundation of parents with chronic lung conditions. Many of the participants have sarcoidosis so if you are one of those who participated–thank you!!
Here are the results of the survey.
Who took part
The group was mostly UK-based (76%) and most participants had one or two children. The majority live with a co-parent and have had their conditions—which include sarcoidosis, lymphangioleiomyomatosis (LAM), bronchiectasis, and severe asthma—for five or more years. Their most common symptoms were daily fatigue, breathlessness, and brain fog and more than half of them described their flare-ups as seriously debilitating.
The family knowledge and preparedness gap
While most participants (71%) said their families know where they keep their medications and equipment, only 47% said their family knows how to use or administer them and a mere 8% said their family members had received formal training from a healthcare provider on how to use the medications or equipment.
That is a real gap in the care pathway and especially when it comes to medical emergencies and hospitalizations which is critical as 43% of participants say they are hospitalized regularly (once a year or more).
The questions doctors aren’t asking
One of the most striking results of the survey is that 80% of parents said their doctor has never asked how their condition affects their family. When asked why, their answers were probably familiar to you—they said doctors don’t bring it up, appointments are too brief to talk about it, or patients don’t feel comfortable raising the topic since it’s not necessarily a medical issue.
What is hardest for parents
When asked what was challenging about parenting with a chronic condition, parents were more likely to focus on how their illness impacted their family than their physical symptoms. The answers, in order, of what they struggle with most are when:
- they can’t meet their child’s physical needs (e.g. trips to the playground)
- they are irritable or in a bad mood because they feel unwell
- they can’t help out with chores
- their child feels anxious or worried about them when they are unwell or in the hospital
- they can’t meet their child’s social needs (e.g. play dates)
What parents need from medical professionals
Parents were clear about the kind of support they need. The first and biggest area is how to manage the difficult emotions that come along with having a chronic condition, such as grief, guilt, anger, shame, fear, and anxiety. They also want tips and support on how to explain their illness to a child; what their family should do in a medical emergency; how to explain an unexpected hospitalization to a child; and how to set household guidelines to help manage their condition.
Most patients said they would prefer to receive this training from professionals at a foundation in person, if possible, or as a video they could watch at any time.
Where we are now
These results paint a picture of a community of parents doing the incredible and all too often invisible work of managing serious health conditions while also trying to be fully present for their children. It also points to a real opportunity for better care from physicians who can give referrals to mental health professionals who are experienced in working with families and more family-inclusive training from foundations based on resources developed specifically for parents.
If you’d like to learn more and find free downloadable resources on all these topics, you can visit my website parentingwhilesick.com and sign up for my monthly newsletter that includes tips, scripts, research, parent stories, and more.
Thank you to Parenting While Sick for conducting this survey in partnership with the ELF and for sharing their results with us. Research like this is key to identifying key gaps in care.