Challenges of disorders of sex development: diverse perceptions across stakeholders.
Horm Res Paediatr
; 78(1): 40-6, 2012.
Article
in En
| MEDLINE
| ID: mdl-22832323
ABSTRACT
BACKGROUND/AIMS:
Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Optimal management is patient- and family-centered and delivered by interdisciplinary teams. The present pilot study elicits concerns held by important stakeholders on issues affecting young patients with DSD and their families.METHODS:
Content from focus groups with expert clinicians (pediatric urologists (n = 7), pediatric endocrinologists (n = 10), mental health professionals (n = 4), DSD patient advocates (n = 4), and interviews with parents of DSD-affected children (newborn to 6 years; n = 11) was coded and content-analyzed to identify health-related quality of life issues.RESULTS:
Key stressors varied across stakeholder groups. In general, family-centered issues were noted more than child-centered. In the child-centered domain, providers worried more about physical functioning; family and advocates emphasized gender concerns and body image. In the family-centered domain, parental concerns about medication management outweighed those of providers. Advocates reported more stressors regarding communication/information than other stakeholders.CONCLUSION:
Variability exists across stakeholder groups in the key concerns affecting young children/families with DSD. Interdisciplinary DSD healthcare team development should account for varying perspectives when counseling families and planning treatment.
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Perception
/
Disorders of Sex Development
/
Caregivers
Type of study:
Evaluation_studies
/
Qualitative_research
Aspects:
Patient_preference
Limits:
Child
/
Child, preschool
/
Female
/
Humans
/
Infant
/
Male
/
Newborn
Language:
En
Journal:
Horm Res Paediatr
Journal subject:
ENDOCRINOLOGIA
/
PEDIATRIA
Year:
2012
Document type:
Article
Affiliation country: