title: In the Dark: Challenges of Caring for Sons with Klinefelter Syndrome.
abstract: The purpose of this mixed method study was to describe family management challenges for parents who have sons with Klinefelter Syndrome (KS). Standardized survey results showed that stress, quality of life and family management struggles varied by parent age. When interviewed, parents described feeling uninformed and without support to make decisions about managing their sons' KS. Parents reported that a lack of guidance and case coordination created barriers in caring for their sons throughout childhood. Given the prevalence of KS, health care providers need to be prepared to provide comprehensive evaluation and anticipatory guidance for KS boys and families.
authors.affiliation: Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA. Electronic address: sharron.m.close@emory.edu.
authors.forename: Sharron
authors.initials: S
authors.lastname: Close
authors.affiliation: Yale School of Nursing, West Haven, CT.
authors.forename: Lois
authors.initials: L
authors.lastname: Sadler
authors.affiliation: Yale School of Nursing, West Haven, CT.
authors.forename: Margaret
authors.initials: M
authors.lastname: Grey
mesh_terms: D000328:Adult; D000704:Analysis of Variance; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007713:Klinefelter Syndrome / Q000175:diagnosis* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009679:Nuclear Family / Q000523:psychology*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D013315:Stress, Psychological / Q000453:epidemiology / Q000503:physiopathology
keywords: Family management; KS; Mixed methods; Qualitative research; Quality of life; Stress