How To Help Families Support Children With Chronic Illness? A Health Psychology Podcast Episode.

As a teaching assistant at a special educational needs school and my job is mainly to oversee the treatment and management of a Type 1 Diabetic child, I can see the massive negative impact that chronic illness has on children, their families and their social life. As well as I am a massive supporter of Bronfenbrenner’s Ecological Systems Theory that proposes what happens to a child in different microsystems (like family, school and friendships) are all interconnected and impact a child’s learning and development. Equally, in my experience as a teaching assistant, a chronic illness diagnosis is immensely stressful for parents, it puts a strain on family relationships and it can even cause anger in the parent-child relationship. Especially, when a chronically ill child wishes their parents never took them to the hospital to get diagnosed. That is something I see a lot in my work. Therefore, in this clinical psychology and health psychology podcast episode, you’ll learn how to help families support children with chronic illness, why chronic illness is hard on families and how parents can look after themselves during this immensely stressful time. If you enjoy learning about health psychology, mental health and chronic illness, then this will be a great episode for you.

Today’s psychology podcast episode has been sponsored by Working With Children and Young People: A Guide To Clinical Psychology, Mental Health and Psychotherapy. Available from all major eBook retailers and you can order the paperback and hardback copies from Amazon, your local bookstore and local library, if you request it. Also available as an AI-narrated audiobook from selected audiobook platforms and library systems. For example, Kobo, Spotify, Barnes and Noble, Google Play, Overdrive, Baker and Taylor and Bibliotheca.

Introduction To Children With Chronic Illness

As I spoke about in my previous podcast episode, What Is Chronic Illness For Psychologists, a chronic illness is a condition that lasts for one year or more and it requires ongoing treatment and attention. For example, depression, diabetes, allergies, asthma, cancer, dental decay, haemophilia, sickle cell anaemia and many, many more. As well as according to the United States’ Centers for Disease Control, more than 40% of school-aged children have at least one chronic health condition and 1 in 4 children have multiple chronic illnesses.

Furthermore, chronic illnesses for children begin with an acute phase that follows the diagnosis of the illness and then the child goes through a long stressful phase associated with maintenance and treatment of the condition. Each of these phases directly impacts the child, and if we take a systemic approach for a moment, this stress creates ripples across the family system and it raises challenges and stressors for the parents too.

In my line of work with my diabetic student, they were only diagnosed with Type 1 diabetes a month or so ago, but it has been really stressful for them. Since their life has changed in massive ways and they’ve lost a lot of their independence. Before, they could effectively eat whatever they wanted, whenever they wanted and there would be no consequences. Yet because of the diabetes diagnosis, everything they eat, drink and want to do has to be factored in through the lens of diabetes. Everything has to be carb-counted.

And now, this young child has to have two adults essentially following him around all the time to manage his diabetes. Of course, I make sure there’s a balance. For example, I always give him space, I am not always on top of him and sometimes we have to make compromises with each other, but he didn’t have this before.

This has led the child at times to blame the parents and show anger towards them, because sometimes they believe if the parents had never taken him to the hospital to get diagnosed with diabetes then their life would be better. When these conversations pop up, we need to validate the child, add that the parents did the right thing and that everything is going to be okay.

The main issue with a brand-new diagnosis of a chronic illness, especially for something like diabetes, is that it can take up to 6-months to a year to get his insulin to carbs ratio correct. Until then, his diabetes management is a process of trial and improvement and forming different formulations and seeing how they work.

On the other hand, you have the parents who are stressed, panicked and scared for their child, because they have a newly diagnosed chronic illness, the parents aren’t able to “protect” or “help” their child if needed and it’s nerve-racking.

Why Is Helping Families Support Children With Chronic Illnesses Interesting To Psychologists?

Partly sections like this come from my paedology training from the university, but as my audience is mainly made up of aspiring and qualified psychologists, I want you to understand that even if you don’t intend to work in health psychology. This knowledge is still really useful.

Therefore, if you work in clinical psychology, you might be supporting a parent with depression, anxiety or obsessive-compulsive disorder or another condition, and they reveal that their child’s chronic illness is a major factor behind the development and maintenance of their condition. Especially, if they have a stressful, high-demand job and then they need to come home and support their child with their chronic illness. This means the parent is likely to have no “off time” or time to themselves, because they are always “on”, focused on something and their brain can never relax. The knowledge in this episode will give you an extra level of understanding about how to support these clients.

If you work in business psychology or another workplace environment, you might have a friend, peer or partner who is the parent of a chronically ill child and this presents you with a few challenges. This knowledge could help you to design workplace interventions and policy suggestions that better support this parent while they manage their child’s chronic illness whilst still being productive, happy and feel supported at work. As well as this episode would give you knowledge and empathy so you can understand what your peer or partner is going through, so you know how to support them.

Finally, if you work in educational psychology, if we apply Bronfenbrenner’s Ecological Systems Theory, this is a theory I will talk about more in a future educational psychology podcast episode. Then we understand that parent-child relationship will have an impact on the school-child microsystem too. This is even more important when we consider that a chronic illness is always with a child, it is always having to be managed and the school and parents need to have good communication so both microsystems can adapt their treatment strategy accordingly. This ensures that the child is happy, healthy and able to focus on their education.

For example, this week at the time of writing, there are two useful examples of this in practice. Earlier in the week, the diabetic child had a very severe hypo during the night so his sugar levels dropped dangerously low that he almost slipped into a coma. Yet the parents didn’t tell us, so we didn’t adapt our treatment plan for the next day and at school, it led to a few difficulties that negatively impacted the child’s ability to learn, focus and advance their cognitive development. As well as when we eventually found out later, the parents explained to us how scary, nerve-racking and stressful the whole situation was.

On the other hand, yesterday at the time of writing, the child with diabetes had a hypo, his levels were rocky all day and I needed to make a lot of clinical decisions about his treatments. Thankfully, we were able to stop his chronic illness getting worse so he could focus on his learning, he didn’t miss anymore of his lunch or break so this improved his mood and he could advance his development by learning. Yet I made sure to write our thought process, what happened and anything else down in his notebook so the parents could see what was happening. I wanted to keep a positive, supportive and open line of communication with the parents, because it would help us in the future.

How Can Families Be Helped To Support Children With Chronic Illness?

After that introductory information, let’s move on to learning about what families can do to support children with chronic illnesses.

Support A Chronically Ill Child By Keeping A Regular Routine

Research shows that keeping a regular routine is flat out critical because a chronic illness tends to disturb everyone’s daily routines, including the child’s, siblings’ and parents’. This means whilst it might take you a while to get your bearings after a chronic illness diagnosis, research shows that creating a new normal in terms of your family routine can lead to positive outcomes for all family members. This new normal can include doing chores, waking up, going to bed, the process involved in breakfast, lunch and dinner, managing health-related needs and going to other activities.

In a practical sense in my experience, I work in a special educational needs unit in a mainstream school, so there is a set routine and this helps the SEN children to self-regulate. Yet it is also helpful for me as his main carer at school. I know at 10:15, 11:45 and 14:30 are the main times when I have to do specific things. As well as after the 14:30 check-in and writing the documentation, I know I have to put his notebook and his little black bag in his school bag so he can take it home. Generally speaking, having a routine is helpful for me because it keeps me organised, less stressed and it means I can effectively deal with the health-related needs and other parts of my job.

I imagine it is very similar for parents.

In terms of psychologists, this is a useful tip because we could work with a client to brainstorm new routines, small changes they could make to their daily life so it feels more ordered and organised for them and less overwhelming. The same goes for business psychology. We could suggest to management ways to make the workday more friendly to their routines and medical needs of their chronically ill child. Equally, the parent might want work to remain the same to give them a sense of normalcy and continuity during this stressful time.

Support A Child With Chronic Illness By Becoming an Informed Advocate

I know I always write this whenever I discuss supporting children with physical or mental health conditions, but it is so important that parents and caregivers become educated and informed about their child’s chronic illness. The most important aspects of positive management of chronic illness is learning about “best practice” treatments and what your child’s symptoms are.

Now, I will admit, in the early stages of a chronic illness diagnosis, you might not know what their symptoms are. For example, because the diabetes diagnosis is so new, the child himself doesn’t know what their symptoms are and we can’t tell. We only know he’s having a hypo because the sensor readings. Even though yesterday, his behaviour changed and got more severe and difficult the lower his levels went, so I documented that observation.

In addition, families can become informed advocates by reaching out to community support groups, national organisations for specific disorders and illnesses, hospital outreach programmes and most importantly, use the internet.

Something I have observed is so many people just do not know how to research online and it’s concerning. For example, my brilliant mum might be a type 2 diabetic so when we were told, she didn’t have a clue, so I researched it online, explained it to her and I made her feel more confident in her understanding of her possible condition. Yet she didn’t know how to research it herself.

Also, I would add based on my work, I would suggest that families are not scared to have in-depth conversations with the medical or psychological teams

As an aspiring or qualified psychologist, this tip is useful because regardless of our setting, because of our research and critical thinking background, we are in a unique position to help parents. We can help families learn how to research, how to find good sources and how to understand the information that they’re reading so they can become an informed advocate. As well as for clinical psychologists in particular, a lot of our training focuses on being able to explain potentially distressing or psychologically complex information to a wide range of audiences. This means we are in a good position to effectively explain to the family why it is important that they become informed advocates.

Families Can Support Children With Chronic Illness By Making “cannot”, “cans”

Throughout this podcast episode, I’ve spoken about the overwhelming, stressful and worrying nature of finding out your child has a chronic illness. As well as it can produce a wide range of emotions for parents, like guilt, grief, heartache and depression and intense anxiety. This is especially true because when it comes to chronic illness there are a lot of things that cannot be fixed, changed or controlled and parents can even wish away their child’s chronic illness. Ultimately, this leaves them to feel powerless.

Granted, I did a past podcast episode called, “How To Stop Feeling Powerless To Help A Friend?”, so this episode might give you a few more ideas about how to stop feelings of powerlessness. Yet a lot of this negativity and feelings of overwhelm can come from your self-talk and how you frame things in your mind.

Therefore, some people argue that instead of focusing on the “cannots”, it is best if you change them into a “can”. For example, don’t say “I wish my child didn’t have epilepsy,” instead you could say “I can’t stop the seizure medication side effects making my child so tired,”

This is useful because it gets families to stop putting the blame on them and it gets them to realise and remember that this is out of their control.

Another example is “if only I could stop the needles from hurting my child,”. This “can’t” sentence focuses on the family failing the child by not doing able to do something. Yet we can change the sentence to become more positive by saying “let’s ask the nurse for some numbing cream before the injection today,”. This is a practical step that the family can take to help the child and this helps to combat feelings of powerlessness.

In my diabetic experience, a subtle way how this tip shows up in my work is in this academic term, the special educational needs unit is going to go to a religious site that serves food as part of their community participation, but the diabetic child cannot eat their food. We simply don’t know the ingredients, the carbs and how it is prepared so we cannot accurately calculate the insulin as a result. That is a definitive I can’t. Yet I am considering, once the trip is confirmed, seeing if there is a McDonald’s or another fast food place nearby and seeing if me, the woman I work with the diabetic child could quickly grab something from there. This would mean the child still gets to eat something “different” like their friends and everyone else, but their chronic illness is still being managed.

Thank all the amazing diabetics who have created an app with popular dishes from takeaway restaurants, so I can accurately carb count.

In terms of aspiring and qualified psychologists, this is similar to a lot of our cognitive restructuring work and behavioural activation. We can help the families to become more positive, change their automatic thoughts and to release some of the guilt, pain and anxiety that they have about their child’s chronic illness.

Families Can Support Children With Chronic Illness By Creating a Collaborative Team

The worse thing you could ever do for yourself, your child and their chronic illness management is to go at this alone. This will make you burn out, stressed and it will make the entire process even more overwhelming than it already it. Also, you don’t know everything about your child’s condition. This is why it’s important to monitor your child’s illness with a collaborative team of healthcare professionals as well as paraprofessionals. Yet it’s important that you include help outside of healthcare professionals in your team, so please include people like teachers, trusted friends and family members. These people also need to be in the loop about your child’s medical needs, because this will help you and your child feel safer, more supported and potentially more socially confident.

Personally, for the diabetic child that I support, I am not a healthcare professional at this moment in time but myself and the woman who I work with, we are both apart of his collaborative team. We support his medical needs during the school day, we address any issues that pop up and I make a lot of clinical decisions depending on the situation. If me and the woman were not a part of his collaborative team, then the family would be even more stressed and nervous than they already are and the child’s learning and development would suffer.

Another reason why a collaborative team is important is because according to my new favourite theory, Bronfenbrenner’s Ecological Systems Theory, the child’s education, learning and development is impacted by the relationship and interaction of the family and school microsystems. This is even more true when it comes to managing a chronic illness. If something happens at home that causes the child to become more anxious, this will lead to increased glucose levels so this will negatively impact his learning as he will have to work with us to get his levels under control. This changes his focus from learning and developing his cognitive and social skills towards managing his diabetes. The same goes for if he has a very severe hypo in the night, then I need to be aware so I can make decisions that minimise that happening at school so the child can focus on his learning and development instead of worrying about his diabetes.

Ultimately, this is a useful tip for aspiring and qualified psychologists because we will be a part of the collaborative team (most probably) and we can support the family with their mental health, how overwhelming the situation is and we can support the family to thrive. Since this is something that bugs me about this whole diabetes situation at school, the parents are very stressed, concerned and anxious all the time. Also, the diabetic child is showing slight signs of anger at the condition and his parents, he experiences periods of depression about his illness and I get the feeling that he wants to explain how he feels about the whole situation, but either he doesn’t trust us to have those deep conversations yet or he doesn’t know how to have these deep conversations.

Personally, I would recommend he gets a little mental health support because this is a massive change for him, his life has changed forever and a lot of his childhood has been robbed off him. And there’s only so much me and the woman I work with can do to give him as much freedom as possible.

Just something to consider.

Support Your Child With Chronic Illness By Practising Self-Care

I’ve written about the importance of self-care so many times but it is flat out critical, because if your mental and physical health isn’t good. Then you cannot effectively support your child with chronic illness. This is why it’s important for parents and carers of chronically ill children to focus on their own mental health by resting as well as refuelling. I understand and it’s perfectly normal if families feel bad for taking time for themselves, because they tend to believe time for themselves is time away from their family. Yet this isn’t true.

In reality, by taking time for yourself, you’re able to be a better parent or carer in the long-term. Therefore, please focus on self-care by asking for help, dedicating a scheduled time to take breaks and delegate tasks to others. I would also add it’s important to go out with friends and family, do hobbies and activities that you enjoy and eat a good and healthy diet.

This has been supported by research that found families that devote time to self-care are better able to deal with child illness and family management.

In my opinion, a brief example was Friday at the time of writing, because I was so busy managing the child’s diabetes, I was making so many decisions, filling out documentation and dealing with his hypo. I missed my break and even during my lunch break, I wasn’t able to fully turn off because I was interested in what the occupational therapy woman was doing with a child in front of me. And I strongly believe that because I wasn’t able to take these self-care breaks, that’s why I felt so tired, messed up and lacked energy when I got home.

If I was a parent and this happened (and even at work it applies to some extent), then my ability to think about my child’s chronic illness would be negatively impacted. Even at the end of the school day when a taxi was delayed so the diabetic child amongst others had to stay at school for an extra 40-minutes, if he had gone into a hypo, I would have been so done. I was tired enough making the decision, filling in the documentation and giving the child a biscuit to eat to prevent a hypo in the taxi.

It is full-on supporting a child with chronic illness, and as much as I love it, I only do it for 6 hours a day, 5 days a week.

Finally, aspiring and qualified psychologists are in an excellent position to support families in this regard. We have the psychoeducational skills to teach them the importance of self-care, we can teach them how to practice self-care and we can help them to incorporate these small but important practices in their lives to prevent burnout, overwhelm and anxiety.

Clinical Health Psychology Conclusion

At the end of this psychology podcast episode, I have to admit that it has been a lot of fun putting this episode together. From the research, to reflecting on my own experiences to applying this knowledge to aspiring and qualified psychologists, I have learnt a lot and I hope that you have too.

I would add as a final point that whilst many families and children do learn to cope, live with and thrive with chronic illness. It is still an immensely difficult time for a child and if they’re continuing to experience emotional struggles and mental health difficulties that negatively impact their daily functioning and the management of their chronic illness, then it might be a good idea to seek mental health support.

As a final recap, here’s how families can support children with chronic illness:

·       Keep a regular routine

·       Be an informed advocate

·       Create a collaborative team

·       Change “cannot” to “can”

·       Focus on self-care

I really hope you enjoyed today’s psychology student life psychology podcast episode.

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Clinical Psychology and Health Psychology References and Further Reading

Burton, L. (2022). The family life of sick children: A study of families coping with chronic childhood disease. Routledge.

Griffith, A. K. (2022). Parental burnout and child maltreatment during the COVID-19 pandemic. Journal of family violence, 37(5), 725-731.

https://www.psychologytoday.com/gb/blog/two-takes-on-depression/202505/tips-for-families-dealing-with-chronic-illness-in-children

Mardhiyah, A., Panduragan, S. L., & Mediani, H. S. (2022, October). Reducing psychological impacts on children with chronic disease via family empowerment: a scoping review. In Healthcare (Vol. 10, No. 10, p. 2034). MDPI.

Wakelin, K. E., Read, R. K., Williams, A. Y., Francois‐Walcott, R. R., O'Donnell, N., Satherley, R. M., ... & Jones, C. J. (2025). The Effectiveness of Psychological Interventions for Families of Children With Type 1 Diabetes on Caregiver and Child Functioning: A Systematic Review and Meta‐Analysis. Journal of diabetes, 17(6), e70112.

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