Inborn errors of metabolism result in psychosocial crises that challenge individual and familial modes of functioning across the life cycle. Increased stress, mood disorders, interpersonal challenges, decreased quality of life, and grief reactions are all common for patients and their families. To effectively care for these patients, a holistic approach to their care, which incorporates their social context, is essential. Patients and their families need support as they focus on immediate practical demands, grieve over illness-related losses, and reorient future expectations. A family systems based model provides a flexible and individualized approach to care that allows for optimal psychosocial adjustment throughout the disease process.
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Laboratory of Immunogenetics of Pediatric Autoimmune Diseases, INSERM UMR 1163, Imagine Institute, University Paris Cité, Paris, France.
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University Hassan II of Casablanca, Faculty of medicine and pharmacy of Casablanca, Abderrahim HAROUCHI Mother-child hospital, Pediatric Anesthesiology and Intensive Care Unit, Laboratory of clinical immunology, inflammation and allergy (LICIA), Casablanca, Morocco.
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