OBJECTIVE: To compare parental adjustment, social support, and family functioning between families of children with neurofibromatosis 1 (NF1) and a group of demographically similar comparison families, and to examine the impact of disease severity. METHODS: Questionnaires were completed at home by parents of 54 children with NF1 (54 mothers and 42 fathers) and 51 comparison children (49 mothers and 32 fathers). RESULTS: Few differences between groups were identified for parental distress, social support, or family environment. Greater neurological impairment in children with NF1 was associated with greater distress, more family conflict, less positive mealtime interactions, and less social support from the perspectives of mothers. CONCLUSIONS: Overall, parents of children with NF1 appear similar to parents of comparison children. Mothers who have children with NF1 characterized by greater neurological impairment may be at risk for more difficulties. Future work exploring long-term adjustment for these mothers as well as interventions to ameliorate any potential difficulties may be appropriate.
OBJECTIVE: To compare parental adjustment, social support, and family functioning between families of children with neurofibromatosis 1 (NF1) and a group of demographically similar comparison families, and to examine the impact of disease severity. METHODS: Questionnaires were completed at home by parents of 54 children with NF1 (54 mothers and 42 fathers) and 51 comparison children (49 mothers and 32 fathers). RESULTS: Few differences between groups were identified for parental distress, social support, or family environment. Greater neurological impairment in children with NF1 was associated with greater distress, more family conflict, less positive mealtime interactions, and less social support from the perspectives of mothers. CONCLUSIONS: Overall, parents of children with NF1 appear similar to parents of comparison children. Mothers who have children with NF1 characterized by greater neurological impairment may be at risk for more difficulties. Future work exploring long-term adjustment for these mothers as well as interventions to ameliorate any potential difficulties may be appropriate.
Authors: S Martin; M C Roderick; R Lockridge; M A Toledo-Tamula; A Baldwin; P Knight; P Wolters Journal: J Genet Couns Date: 2016-11-07 Impact factor: 2.537
Authors: Staci Martin; Kari L Struemph; Alyssa Poblete; Mary Anne Toledo-Tamula; Robin Lockridge; Marie Claire Roderick; Pamela Wolters Journal: J Community Genet Date: 2018-03-02
Authors: Staci Martin; Pamela L Wolters; Andrea Baldwin; Marie Claire Roderick; Mary Anne Toledo-Tamula; Andrea Gillespie; Brigitte Widemann Journal: J Genet Couns Date: 2014-01-28 Impact factor: 2.537
Authors: Ronald T Brown; Lori Wiener; Mary Jo Kupst; Tara Brennan; Richard Behrman; Bruce E Compas; T David Elkin; Diane L Fairclough; Sarah Friebert; Ernest Katz; Anne E Kazak; Avi Madan-Swain; Nancy Mansfield; Larry L Mullins; Robert Noll; Andrea Farkas Patenaude; Sean Phipps; O J Sahler; Barbara Sourkes; Lonnie Zeltzer Journal: J Pediatr Psychol Date: 2007-09-29
Authors: Molly M Garwood; Jessica M Bernacki; Kathi M Fine; Keri R Hainsworth; W Hobart Davies; Bonita P Klein-Tasman Journal: Pain Res Treat Date: 2012-09-26
Authors: A T Spuijbroek; R Oostenbrink; J M Landgraf; E Rietveld; A de Goede-Bolder; E F van Beeck; M van Baar; H Raat; H A Moll Journal: Qual Life Res Date: 2010-12-12 Impact factor: 4.147
Authors: Michael J Fisher; Allan J Belzberg; Peter de Blank; Thomas De Raedt; Florent Elefteriou; Rosalie E Ferner; Marco Giovannini; Gordon J Harris; Michel Kalamarides; Matthias A Karajannis; AeRang Kim; Conxi Lázaro; Lu Q Le; Wei Li; Robert Listernick; Staci Martin; Helen Morrison; Eric Pasmant; Nancy Ratner; Elisabeth Schorry; Nicole J Ullrich; David Viskochil; Brian Weiss; Brigitte C Widemann; Yuan Zhu; Annette Bakker; Eduard Serra Journal: Am J Med Genet A Date: 2018-05 Impact factor: 2.578