Family Support Groups: An Essential Contribution to Follow‐up Care

Slater, Graham; Trompelt, J.; Kunst, Caren; Gawne, Karen; Armand, Frédéric

doi:10.1097/mpg.0b013e318210597a

Cited by 2 publications

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“…Family support groups are another important source of psychosocial support for EA patients and parents. 81 They facilitate communication and sharing between EA families, as well as promote activities aimed at increasing public awareness and supporting scientific research. Participation in these activities can in itself be therapeutic because it increases feelings of empowerment in both patients and parents.…”

Section: Resultsmentioning

confidence: 99%

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Psychological impact of esophageal atresia: review of the research and clinical evidence

Caplan

2013

Dis Esophagus

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Esophageal atresia (EA) occurs in one out of 2500 to 4500 live births. As the vast majority of infants are now surviving neonatal corrective surgery, the focus has shifted from mortality to morbidity associated with EA. However, little is known about its psychological morbidity. This paper synthesizes research and clinical evidence to highlight the psychological sequelae of EA, including its impact on parents' psychological functioning and its effects on child development from infancy to adulthood. Whether it is discovered at birth or prenatally, EA is a psychologically traumatic event, and parents are at risk for developing traumatic stress reactions following diagnosis. Neonatal surgery and intensive care, risk of complications, associated anomalies, and genetic etiologies multiply risk for parents' acute and post-traumatic stress disorders (PTSD). Parental PTSD has a negative impact on infant and child development through its effects on parenting skills and parent-child interactions. EA children are also at risk for PTSD because of invasive and stressful procedures they undergo during the neonatal period. Consequences of EA can have an important long-term impact on children's psychological and social development. The scant studies pertaining to cognitive functioning suggest that EA does not affect mental development during infancy, but may be associated with deficits as children reach school age. Long-term sequelae are unclear because psychological functioning in adults has not yet been adequately examined. Research and clinical evidence of psychological morbidity associated with EA has implications for clinical practice. Psychological support for parents must begin during the neonatal period and should continue as an integral component of long-term follow up for both children and parents. Support is best provided within the context of a multidisciplinary treatment team that follows patients from birth through childhood and adolescence. Psychological follow up should continue into adulthood, as patients grow up and transition from pediatric to adult health-care settings.

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Section: Resultsmentioning

confidence: 99%

“…Family support groups are another important source of psychosocial support for EA patients and parents . They facilitate communication and sharing between EA families, as well as promote activities aimed at increasing public awareness and supporting scientific research.…”

Section: Resultsmentioning

confidence: 99%