Skip to main content
Top
Gepubliceerd in: Quality of Life Research 3/2020

10-12-2019

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

Auteurs: Lacretia Carroll, Carolyn Graff, Mona Wicks, Alicia Diaz Thomas

Gepubliceerd in: Quality of Life Research | Uitgave 3/2020

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

Many chronic illnesses are self-evident. However, disorders like congenital adrenal hyperplasia (CAH) are invisible to the naked eye and unnoticeable to others. Therefore, invisible illness is often a shared, misconstrued experience for children with CAH, their caregivers, and the medical community. This experience, along with its lack of awareness and added stigma, may impact overall quality of life (QOL) of such individuals. To facilitate our understanding of QOL of children with CAH, we must first explore their subjective experiences. This study aimed to capture their lived experiences and provide recommendations to support children with CAH.

Methods

We conducted semi-structured interviews with 20 female children with CAH between 7 and 18 years and their caregivers. Interviews were transcribed verbatim, checked for accuracy, and independently coded by the first and second author. Content analysis was used to organize data so that codes could be condensed into categories and themes. Differences around code, category, and theme description were reconciled.

Results

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.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference Lee, P. A., Nordenström, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., et al. (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics,85(3), 158–180.CrossRef Lee, P. A., Nordenström, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., et al. (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics,85(3), 158–180.CrossRef
2.
go back to reference Speiser, P. W., Azziz, R., Baskin, L. S., Ghizzoni, L., Hensle, T. W., Merke, D. P., et al. (2010). Congenital adrenal hyperplasia due to steroid 21-hydroxylase deficiency: An endocrine society clinical practice guideline. The Journal of Clinical Endocrinology and Metabolism,95(9), 4133–4160.CrossRef Speiser, P. W., Azziz, R., Baskin, L. S., Ghizzoni, L., Hensle, T. W., Merke, D. P., et al. (2010). Congenital adrenal hyperplasia due to steroid 21-hydroxylase deficiency: An endocrine society clinical practice guideline. The Journal of Clinical Endocrinology and Metabolism,95(9), 4133–4160.CrossRef
3.
go back to reference Witchel, S. F., & Azziz, R. (2011). Congenital adrenal hyperplasia. Journal of Pediatric and Adolescent Gynecology,24(3), 116–126.CrossRef Witchel, S. F., & Azziz, R. (2011). Congenital adrenal hyperplasia. Journal of Pediatric and Adolescent Gynecology,24(3), 116–126.CrossRef
4.
go back to reference Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing,32(1), 243–248.CrossRef Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing,32(1), 243–248.CrossRef
5.
go back to reference Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London: State University of New York Press. Manen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. London: State University of New York Press.
6.
go back to reference Earle, V. (2010). Phenomenology as research method or substantive metaphysics? An overview of phenomenology’s uses in nursing. Nursing Philosophy,11(4), 286–296.CrossRef Earle, V. (2010). Phenomenology as research method or substantive metaphysics? An overview of phenomenology’s uses in nursing. Nursing Philosophy,11(4), 286–296.CrossRef
7.
go back to reference Bronfenbrenner, U. (2005). Making human beings human: Bioecological perspectives on human development. Thousand Oaks: Sage Publications. Bronfenbrenner, U. (2005). Making human beings human: Bioecological perspectives on human development. Thousand Oaks: Sage Publications.
8.
go back to reference Bronfenbrenner, U., & Morris, P. (2006). The bioecological model of human development. In R. M. Lerner (Ed.), Handbook of child psychology: Theoretical models of human development (pp. 793–828). Hoboken: John Wiley & Sons. Bronfenbrenner, U., & Morris, P. (2006). The bioecological model of human development. In R. M. Lerner (Ed.), Handbook of child psychology: Theoretical models of human development (pp. 793–828). Hoboken: John Wiley & Sons.
9.
go back to reference Carney, T. (2001). Quality of life in child and adolescent illness, concepts, methods and findings. In H. M. Koot & J. L. Wallander (Eds.), Quality of life in child and adolescent illness, concepts, methods and findings. Sussex: Brunner-Routledge Publishers. Carney, T. (2001). Quality of life in child and adolescent illness, concepts, methods and findings. In H. M. Koot & J. L. Wallander (Eds.), Quality of life in child and adolescent illness, concepts, methods and findings. Sussex: Brunner-Routledge Publishers.
12.
go back to reference Creswell, J., & Poth, C. (2018). qualitative inquiry and research design: Choosing among the five approaches (4th ed.). Los Angeles: Sage. Creswell, J., & Poth, C. (2018). qualitative inquiry and research design: Choosing among the five approaches (4th ed.). Los Angeles: Sage.
13.
14.
go back to reference Engberg, H., Frisén, L., Möller, A., Hagenfeldt, K., & Nordenskjöld, A. (2016). The experience of women living with congenital adrenal hyperplasia: Impact of the condition and the care given. Clinical Endocrinology,85(1), 21–28.CrossRef Engberg, H., Frisén, L., Möller, A., Hagenfeldt, K., & Nordenskjöld, A. (2016). The experience of women living with congenital adrenal hyperplasia: Impact of the condition and the care given. Clinical Endocrinology,85(1), 21–28.CrossRef
15.
go back to reference Sandberg, D. E., & Mazur, T. (2014). A noncategorical approach to the psychosocial care of persons with DSD and their families. In B. Kreukels, T. Steensma, & A. de Vries (Eds.), Gender dysphoria and disorders of sex development: Progress in care and knowledge. Boston: Springer. Sandberg, D. E., & Mazur, T. (2014). A noncategorical approach to the psychosocial care of persons with DSD and their families. In B. Kreukels, T. Steensma, & A. de Vries (Eds.), Gender dysphoria and disorders of sex development: Progress in care and knowledge. Boston: Springer.
17.
go back to reference Hinton, D., & Kirk, S. (2015). Teachers’ perspectives of supporting pupils with long-term health conditions in mainstream schools: A narrative review of the literature. Health and Social Care in the Community,23(2), 107–120.CrossRef Hinton, D., & Kirk, S. (2015). Teachers’ perspectives of supporting pupils with long-term health conditions in mainstream schools: A narrative review of the literature. Health and Social Care in the Community,23(2), 107–120.CrossRef
19.
go back to reference Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care,43(5), 493–499.CrossRef Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care,43(5), 493–499.CrossRef
Metagegevens
Titel
Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia
Auteurs
Lacretia Carroll
Carolyn Graff
Mona Wicks
Alicia Diaz Thomas
Publicatiedatum
10-12-2019
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-019-02350-2

Andere artikelen Uitgave 3/2020

Quality of Life Research 3/2020 Naar de uitgave