Raising a child with 22q-related conditions brings unique challenges for caregivers. A recent study by Dariusz Walkowiak & Jan Domaradzki at the Poznan University of Medical Sciences in Poland provides valuable insights into how caregiving for a child with del22q11.2 impacts parents’ quality of life (QoL) and the burdens they face. While this study specifically explored the experiences of parents of children with del22q11.2, the findings are likely to equally affect parents of children with any 22q-related condition. The findings from this study offer a deeper understanding of the emotional, physical, financial, and social hurdles that many caregivers experience. Let’s break it down to see how this study sheds light on ways to better support families affected by 22q-related conditions.
What Is 22q11.2 Deletion Syndrome?
Del22q11.2 is a genetic condition caused by a small deletion on chromosome 22. This condition can cause a wide range of symptoms, including heart defects, developmental delays, learning disabilities, and neuropsychiatric disorders like ADHD, autism, and anxiety. While every individual with del22q11.2 experiences the condition differently, all families face some form of ongoing support and care.
Who Was Involved in the Study?
The study surveyed 134 caregivers, mostly mothers, of children with del22q11.2 in Poland. The majority of participants were aged between 30 and 49, with nearly half employed full-time. The findings reflect the lived experiences of these parents, most of whom have spent years navigating the complex needs of their children.
How Was the Study Done?
This research used an online survey to gather data on caregivers’ QoL, caregiving burden, and financial well-being. The survey included standardised tools, such as the WHO Quality of Life-BREF (WHOQOL-BREF) and the Zarit Burden Interview (ZBI), to assess various aspects of life that caregiving affects. Both of these questionnaires are frequently used in similar studies of other groups of caregivers.
What Did the Study Find?
The results highlight several key challenges faced by caregivers:
1. Lower Quality of Life:
- The study found that the majority of caregivers reported QoL scores significantly lower than the general population, particularly in physical and social health domains.
- Many caregivers face physical exhaustion and social isolation as they balance caregiving with other responsibilities.
2. Financial Burden:
- Financial stress was identified as a key factor impacting caregivers’ QoL.
- The high costs associated with medical care, therapy, and specialised equipment often force parents to reduce their working hours or leave jobs altogether.
- This financial strain was also tied to a greater sense of caregiver burden.
3. Emotional Strain:
- Caregivers often experience significant emotional challenges, including anxiety about their child’s future, managing complex medical care, and feeling responsible for the child’s well-being.
- The study emphasises the importance of professional activity for caregivers, as those who continued to work reported better psychological well-being.
4. Impact of Delayed Diagnosis:
- Another finding from the study was the impact of delayed diagnoses on caregivers’ emotional health.
- The longer it took to diagnose del22q11.2, the more significant the burden on caregivers, leading to ongoing stress and uncertainty.
What Does This Mean for Families?
This study highlights the need for targeted support systems for caregivers of children with del22q11.2. These findings suggest that:
- Improved diagnostic processes can reduce caregiver stress, as families often face long delays in receiving an accurate diagnosis.
- Financial support can alleviate some of the economic burdens and allow caregivers to maintain a better balance between work and care responsibilities.
- Mental health and emotional support are essential for caregivers, who often carry significant psychological strain. Respite care, therapy, and support groups are vital in helping parents manage the emotional toll of caregiving.
What Can Families Do?
If you are caring for a child with del22q11.2 or other 22q-related conditions, this research underscores the importance of asking for help. Here are a few ways to improve your well-being:
- Seek financial assistance: Look into available financial support programmes for medical expenses, and talk to social workers or healthcare providers about potential resources.
- Prioritise your own health: Consider ways to continue with professional activities or hobbies that bring you joy and maintain your mental well-being. Taking breaks and seeking respite care can make a big difference.
- Build a support network: Connecting with other families who understand your journey can provide emotional support and reduce feelings of isolation.
Final Thoughts
Being a caregiver for a child with a 22q-related condition is incredibly rewarding, but it’s also a journey filled with challenges. By understanding the impact of caregiving on QoL and the associated burdens, we can advocate for better systems of support that help both the caregivers and the children. Together, we can ensure that every family affected by 22q11.2DS has the resources they need to thrive.
For more on this topic, we encourage you to check out the full study, which you can find here:
You can also visit our parent page for further information on how to support your family’s well-being. We have designed two programs to support parents: the Care4Parents and the Feelings in Focus program. Both of these programs focus on helping parents develop skills and strategies to better manage everyday challenges. You might also want to tune into our upcoming webinar: What about me? Stress and energy management for parents that will be held live in October 2025 and then available as an on-demand webinar.
