Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia.

Lacretia Carroll Joyce Carolyn Graff Mona Newsome Wicks Alicia M Diaz-Thomas

Published in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2019)

Participants' experiences were described in five themes: (1) Making sense of the situation; (2) Emotional and psychological impact of an invisible illness; (3) Normalcy; (4) Disclosure of diagnosis; and (5) Improving the care of children with CAH CONCLUSION: Exploring children's views about living with an invisible illness illuminated individual aspects contributing to our in-depth understanding of experiences of children with CAH. Ongoing education and awareness of CAH is necessary to help mitigate the stigma associated with living with CAH.

Keyphrases

young adults
mental health
healthcare
palliative care
quality improvement
hiv aids
physical activity
pain management
social support
chronic pain
mental illness
health insurance
affordable care act
antiretroviral therapy
patient reported