Families caring for chronically ill children with tuberous sclerosis complex.

Families caring for chronically ill children with tuberous sclerosis complex.

Parker M

Family & Community Health

1996

Longitudinal Studies; caregivers; Caregivers-Psychological Aspects; Chronically Ill Children-Home Care; Pediatric Neurology; Pediatric Neurology-Care and Treatment; Stress (Psychology); Stress (Psychology)-Care and Treatment; Tuberous Sclerosis; Tuberous Sclerosis-Psychological Aspects

Families who care for children with tuberous sclerosis complex (TSC) tend to experience severe psychological stress. Families react to TSC with guilt, chronic grief, and a gradual loss of spontaneity. Since TSC is a relatively rare pediatric neurological disorder, families often have difficulty in finding support from formal and informal sources. Many parents of children with TSC prefer greater awareness of this disease in health care professionals.

1996

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