The Often Overlooked Challenge: Parental Mental Health In The Face Of Intractable Epilepsy

When a child is diagnosed with drug-resistant epilepsy, the focus is naturally on their health and treatment. However, a recent study sheds light on an often overlooked aspect of this journey: the emotional and mental well-being of the parents.

As a parent to a child with intractable epilepsy, I can attest to the emotions that come along with this complex diagnosis. Controlling epilepsy is rarely a quick fix, and each case is unique. It often takes trials of various medications, titrating dosages, and other interventions before one can achieve seizure control. Because there are so many combinations of treatments that may work in epilepsy, it can be daunting for a parent to wonder if they followed the “correct route” for their child. Even after a period of seizure control, there is often a lingering fear of when an episode may strike again.

The Three Trajectories of Parental Well-Being: Steady Navigators, Overcomers, and Strugglers

In 2023, Smith and colleagues studied parents of 259 children with drug-resistant epilepsy from eight epilepsy centers in Canada. Participants were recruited at the time of their evaluation for epilepsy surgery candidacy. The researchers identified three distinct trajectories of parent well-being in the two years after their child’s evaluation for epilepsy surgery:

The Steady Navigators

(Optimal-Stable Group)

Some parents show incredible resilience. They start and stay strong, maintaining a stable emotional state with minimal symptoms of depression or anxiety. These parents also report having strong family support systems. It’s a path of consistent strength.

The Overcomers

(Mild-Decreasing-Plateau Group)

Another group starts with mild symptoms of depression and anxiety. The good news? They show improvement over time. Although their journey begins on a rocky path, they gradually find their footing, reaching a more stable emotional state as time passes. Their family support remains moderately strong throughout.

The Strugglers

(Moderate-Decreasing Group)

This group faces a more challenging road. They begin with moderate levels of depression and anxiety, and although there is some improvement, it’s only slight. These parents often find themselves struggling with limited family support.

Factors Influencing Parental Emotional Health: Beyond Medical Treatment

What influences these paths? Interestingly, the type of treatment—surgery or medical therapy—doesn’t play a significant role. However, the financial status of the family and the father’s involvement can make a difference.

A key factor is whether the child becomes seizure-free after surgery. Unsurprisingly, parents whose children reach this milestone tend to have a more positive emotional trajectory. Parents whose children were seizure-free at the last follow-up were likelier to be in either the optimally-stable or mild-decreasing-plateau group.

Addressing the Gap: The Need for Holistic Support in Epilepsy Care

Depression and anxiety are common in the general population. It’s to be expected that those with chronic illness and the families who care for them would have increased risk. Even with this knowledge, there is a gap between parents’ needs and available support.

Some disease clinics have noted this finding and have taken action to encourage improvement. For example, all individuals with cystic fibrosis are screened annually in clinic for depression and anxiety. Additionally, at least one primary caregiver of the child is offered an annual screening. Of course, not all caregivers who need help will agree to a screening, but it is a step in the right direction. By the clinics themselves offering the screenings, the families may feel more seen and that their struggles are acknowledged.

This research by Smith and colleagues provides valuable insights into the varied experiences of parents dealing with their child’s drug-resistant epilepsy, emphasizing the need for holistic family-centered approaches in epilepsy care. As we move forward in the field of epilepsy treatment, let’s not forget the caregivers and the emotional rollercoaster they ride.

While medical teams focus on treating children with epilepsy, it’s crucial to remember the parents and caregivers. Those showing signs of emotional distress, especially with limited family resources, need support early in their journey. This approach ensures that the whole family, not just the patient, receives care and attention. Their well-being is a vital part of the journey towards healing and hope.

The Importance of Social Support and Community for Parents of Children with Epilepsy

The significance of social support, especially from those who truly understand our experiences, cannot be overstated. As someone who has personally navigated the challenges of parenting two children with health issues, I can attest to the immense impact that connecting with other parents in similar circumstances has. These bonds forge a unique understanding and solace during difficult times.

My own journey with my ‘epilepsy tribe’ has been indispensable; I cannot imagine facing such trials without their empathy and support. This shared empathy becomes even more profound when you have experienced moments like holding your child through numerous seizures or witnessing them being taken for brain surgery.

The connections formed in these shared experiences are not just supportive; they are lifelines.

A special note

We shared this blog post with the lead author of the paper, Dr. Mary Lou Smith, a renowned pediatric neuropsychologist with special interest in pediatric epilepsy surgery:

I appreciate the overview and the insightful interpretation by a parent who knows the struggles of living with the consequences of having a child with epilepsy.  I believe that the study emphasizes the need for health care teams to acknowledge that parents may be struggling with symptoms of anxiety and depression and to recognize these symptoms early. The results highlight the role of resources for family support in enhancing the well-being of parents. These factors are among the few identified that are modifiable influences on outcomes in children and parents. Let’s really put our action into truly providing family-centered care.

Reference

Smith ML, Puka K, Speechley KN, Ferro MA, Connolly MB, Major P, Gallagher A, Almubarak S, Hasal S, Ramachandrannair R, Andrade A, Xu Q, Leung E, Snead OC 3rd, Widjaja E. Trajectories of parent well-being in children with drug-resistant epilepsy. Epilepsia. 2023 Dec;64(12):3342-3353. doi: 10.1111/epi.17797. Epub 2023 Oct 25. PMID: 37828819.

Helpful Resources

✔︎ Meet other families in our epilepsy surgery community at our family and research conference next summer.

✔︎ Connect with a Parent Support Navigator to help you with your questions and concerns

✔︎ Our Almost Everything List include financial aid programs and other resources

✔︎ The Managing the Toll of Caregiving webinar series can help you with coping strategies

✔︎ Connect with social services through our UniteUs network