Health Survey of Adults with Neurofibromatosis 1 Compared to Population Study Controls

Neurofibromatosis type 1 (NF1) is a genetic, autosomal dominant multi-organ disease characterized by susceptibility to tumor formation, changes in skin pigmentation, skeletal abnormalities, and neuropsychological deficits. Clinical studies have shown impaired health-related quality of life (HQoL) in adults with NF1. However, little is known about HQoL in non-clinical NF1 samples. We conducted a cross-sectional self-report survey of 142 persons with NF1 (M age?=?50.3 years, SD?=?12.0, range 32 to 80; 62.0% females) recruited from non-clinical settings. Several HQoL domains, including life satisfaction, mental health, sleep, pain, gastrointestinal problems, oral health, and social support, were compared between the NF1 sample and 46,293 controls from the HUNT3 population study. We also examined gender differences within the NF1 sample and predictors of HQoL. Compared to controls, the NF1 sample reported significantly poorer life satisfaction, mental health, sleep, and oral health, and more pain, gastrointestinal problems, comorbid diseases, and memory problems. Several HQoL domains were significantly correlated. Mental health was the only unique significant predictor of overall life satisfaction. Women with NF1 reported significantly more mental health, sleep, and pain problems than men with NF1. Mental health assessment and management should be integrated into clinical care of persons with NF1 to potentially improve their HQoL.     

Exposure Quality in Cognitive Behavioral Treatment for Youth Anxiety Disorders—Predictors and Associations with Outcomes

Journal of Child and Family Studies - To optimize cognitive behavioral therapy (CBT) outcomes for anxiety disorders in youth, more knowledge is needed about how specific CBT components work....     

“It can save you if you just forget”: Closeness and Competence as Conditions for Coping among Ugandan Orphans

This article explores the coping strategies of orphaned children and their caregivers supported by a community-based organization in a Ugandan slum area. In-depth qualitative interviews were conducted with eight orphans (aged 12 to 16 years) and their caregivers selected by the community-based organization. The children had experienced several co-occurring risk factors such as loss and separation, poverty, disease, and an unsafe environment. Most caregivers were extended family members. One caregiver was an unrelated foster carer. Three of the households were child-headed. Data were analysed using an adapted approach of Giorgio's (Hafting, 1995; Malterud, 2001) psychological-phenomenological method. Participating children from child-headed households lacked protective factors associated with closeness (i.e., supportive dyadic relationships). All the children in the study experienced competence in the arenas of school and household chores. Cultural advice on handling adversity, including ‘forgetting’, ‘accepting’ and ‘adjusting’, appears to contradict Western theories of coping. Sommerschild's theoretical model on the conditions for coping was effective in identifying conditions in children's lives that may impair their coping, self-worth, and resilience.