title: Inborn errors of metabolism: psychosocial challenges and proposed family systems model of intervention.
abstract: 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.
authors.affiliation: Palo Alto University, Department of Psychology, Palo Alto, CA 94304, USA. stacyweber@uwalumni.com
authors.forename: Stacy L
authors.initials: SL
authors.lastname: Weber
authors.forename: Summer
authors.initials: S
authors.lastname: Segal
authors.forename: Wendy
authors.initials: W
authors.lastname: Packman
mesh_terms: D000223:Adaptation, Psychological; D005190:Family / Q000523:psychology*; D005196:Family Therapy; D030342:Genetic Diseases, Inborn / Q000235:genetics* / Q000523:psychology*; D005820:Genetic Testing; D006801:Humans; D008960:Models, Psychological; D012917:Social Adjustment