While other TAND clusters primarily impact the person with tuberous sclerosis complex (TSC), the disease impacts the entire family. The wraparound psychosocial cluster refers to issues that can also affect caregivers, siblings, and other family members like self-esteem, family stress and relationship difficulties. In addition, very high levels of stress can lead to difficulties for families to connect with others in their community and may impede the ability of both individuals with TSC and their caregivers to progress in their own education, work, or career.

More research is needed to better understand the psychosocial health and well-being of individuals and families who live with TSC. Currently, not enough is done to evaluate and support the psychosocial needs of families. Given the fundamental role caregivers and families play as expert partners in the life journey of people with TSC, it is critical to monitor and ensure their well-being and metal health along with the health of their loved ones. Visit the Mental Health section of our website for additional information and resources.

The consensus panel recommends the following:

Psychosocial cluster recommendations

  • Monitor the psychosocial health and wellbeing of all individuals with TSC.
  • Monitor the psychosocial functioning of all family members who live with TSC.
  • Provide integrated and well-coordinated care to families who live with TSC.
  • Comprehensive family-centered care should include psychosocial interventions and practical support.
  • Focus on and measure the quality of life of individuals with TSC and their families.
  • Provide dedicated support to individuals and caregivers to optimize their employment and professional lives.
  • Care for the caregivers.
Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.

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