The challenges and unmet needs of families and caregivers of people living with TSC
We know that caring for someone living with TSC can bring both joy and complex challenges, and the findings from this international study reflect this.
Sadly there are no quick fixes or magic-wand solutions to the issues it identifies but it’s important to keep raising awareness of the pressures faced by families living with TSC. It is also important to recognise the strong connection between caregiver wellbeing and the wellbeing of the person living with TSC.
This connection is exactly what the Well-Beans for Caregivers program focuses on. Our Community in Australia currently has a unique opportunity to take part in this international research program, which is designed to support the mental health and resilience of parents and family caregivers.
We are currently inviting expressions of interest from parents and carers who would like to be invited to participate in the Well-Beans program. Find out more on our website.
About this study
Caregivers are indispensable in TSC care. They are frequently providing daily support, coordinating medical appointments, managing treatments, and responding to the complex behavioural, developmental, and medical needs of the person living with TSC. Despite their critical role, caregivers’ experiences are often overlooked in research and health care planning.
This review analysed 9 studies involving nearly 1,000 informal caregivers across Europe and the US. It aimed to explore the full impact of TSC on families, including the emotional, physical, social, and financial challenges caregivers face.
The review also examined the unmet needs of caregivers – such as access to psychological support, respite care, and clear information about TSC management – in order to highlight areas where health care systems and support services could better assist families.
How the study was conducted
Researchers followed systematic review methods and searched 4 major databases for original studies on caregiver experiences in TSC. Both quantitative and qualitative research were included.
Quantitative studies included numerical data, such as survey scores on depression, anxiety, or quality of life.
Qualitative studies included descriptive, non-numerical data, often through interviews or open-ended questions, to explore caregivers’ personal experiences, emotions, and perspectives in depth.
Caregivers were mainly parents or close relatives who provided primary care.
Outcomes of the study
Unmet needs among caregivers were consistently reported across the studies. These included access to psychological and emotional support to help manage stress and anxiety, clearer information on TSC care and management, availability of respite services to provide temporary relief from caregiving duties, and better coordination across health care and social services to ensure families receive timely and comprehensive support.
The review identified 5 major themes shaping caregiver experiences:
Caregivers expressed frustration with fragmented health care systems, particularly during the transition from paediatric to adult services.
Age of the person with TSC
Caring for adults often placed a heavier toll on caregivers’ physical and emotional health compared to caring for children.
Both younger and older ages present unique challenges: early caregiving often involves emotional stress and adjustment to diagnosis, while later stages involve more intensive, long-term care.
Caregiver characteristics
Most caregivers were women (usually mothers).
Many caregivers reduced their work hours or left employment, leading to financial strain. Families frequently faced high out-of-pocket costs and limited access to financial assistance.
Disease-related features
Epilepsy (especially if treatment-resistant), intellectual disability, autism, and aggressive behaviours were particularly stressful for caregivers.
More severe genetic forms of TSC (especially TSC2) were linked to greater caregiver depression and lower quality of life.
Impact on caregiver health
Caregivers reported depression, anxiety, guilt, fatigue, and sleep problems.
The quality of life of caregivers and the person with TSC were closely intertwined: when the patient struggled, caregivers did too.
Disrupted family dynamics
Sibling relationships and daily routines were often strained.
Conclusions of the study
Caregivers of people living with TSC can face heavy and sustained emotional, physical, financial, and social burden. Their challenges arise not only from the severity of the condition but also from gaps in health care and support systems.
Because caregiver well-being directly influences the quality of life of people living with TSC, providing support to caregivers should be considered an essential component of TSC care.
Implications of the study
The findings highlight the need for a multifaceted approach to supporting caregivers of people living with TSC. In health care, multidisciplinary care should incorporate structured caregiver support, including mental health services, psychological support, and respite planning to help families manage the emotional, physical, and practical demands of caregiving. From a policy perspective, families require stronger financial and workplace protections, alongside smoother transitions across life stages and care systems, to reduce stress and improve continuity of care.
Further research studies are needed to better understand the experiences of under-represented groups, such as male caregivers, siblings, and families outside Europe and the US, as well as to explore long-term patterns of caregiver burden, resilience, and coping strategies.
DISCLAIMER
This information is intended to provide some insights into recent TSC-related research. It is not intended to, and it should not, constitute medical or other advice. Readers are warned not to take any action without first seeking medical advice.
Poprelka K, Fasilis T, Patrikelis P, Stefanatou M, Ntinopoulou E, Verentzioti A, Alexoudi A, Stavrinou LC, Korfias S, Gatzonis S. Unmet needs and challenges faced by caregivers in tuberous sclerosis complex: An integrative review. Epilepsy Behav. 2025 Aug 27;171:110659. doi: 10.1016/j.yebeh.2025.110659. Epub ahead of print. PMID: 40876192.
The full paper can be accessed at: https://doi.org/10.1016/j.yebeh.2025.110659