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Family and sibling support

Boston Children's Child Life Services provides a variety of helpful materials for families and siblings of chronically ill children. We recommend downloading the following information sheets.

Psychosocial support team

Social work. Our clinical social workers have helped many other families of children with chronic illness. We recognize that your child's illness can impact their emotional, social, mental, and developmental health. Your social worker is available to provide support to you and your family related to a wide variety of concerns including:

  • coping with diagnosis, illness, or hospitalization
  • impact of illness on family members
  • school or educational concerns
  • financial difficulties

Child life specialists. Child life specialists work to enhance patients' emotional, social, and cognitive growth during a hospital visit, taking into consideration each child's family, culture, and developmental needs. They use developmental interventions and play to help patients and families adjust to and understand their health care experiences. Please contact your Boston Children's social worker to obtain a referral to a child life specialist.

Mental health providers. Children and their families living with a chronic illness may benefit from having access to mental health care. Our team can help connect you with mental health professionals in your specific community or provide additional education to your mental health professional about midaortic syndrome and renovascular hypertension to better support your child's emotional, mental, and social health needs.

External resources for patients and parents

Please note that neither Boston Children's Hospital nor the Midaortic Syndrome and Renovascular Hypertension Center unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

  • Parents Helping Parents meets the needs of individuals and their families with any special needs, including illness, accidents, birth defects, neurological conditions, learning or physical disabilities, mental health issues, etc.
  • The Sibling Support Project is the first national program dedicated to the lifelong and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

Facebook support groups

You can find various Facebook groups intended to serve as a place of support, connection, and information. Consider searching for groups related to your child's specific diagnosis or need.

Camps

  • The Center for Courageous Kids uplifts children who have life-threatening illnesses by creating experiences year-round that are memorable, exciting, fun, build self-esteem, and are physically safe and medically sound.
  • Victory Junction enriches the lives of children with serious illnesses by providing life-changing camping experiences that are exciting, fun, and empowering, at no cost to children or their families.