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

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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.

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Acknowledgements

We are grateful to the parents and caregivers whose children participated in the study as well as the children who welcomed Dr. Carroll into the most intimate parts of their lives. We also acknowledge the CARES Foundation for assisting with patient recruitment and offering financial support for this research. Additionally, we thank Dr. Oksana Lekarev at the Comprehensive Center for Congenital Adrenal Hyperplasia and New York-Presbyterian Komansky Children’s Hospital, New York, New York, for providing Dr. Carroll with opportunities to learn from and immerse herself in the Center’s clinical activities.

Funding

Supported by the University of Tennessee Health Science Center College of Nursing, Beta Theta-at-Large Chapter of Sigma Theta Tau International Honor Society of Nursing, and the CARES Foundation.

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Authors and Affiliations

  1. College of Nursing, University of Tennessee Health Science Center, 920 Madison Avenue, 5th floor, Memphis, TN, 38163, USA

    Lacretia Carroll, Carolyn Graff & Mona Wicks

  2. Department of Pediatric Endocrinology, Le Bonheur Children’s Hospital, 51 North Dunlap, Memphis, TN, 38103, USA

    Alicia Diaz Thomas

  3. University of Tennessee Health Science Center, 920 Madison Avenue, Suite 570, Memphis, TN, 38163, USA

    Lacretia Carroll

Authors
  1. Lacretia Carroll
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  2. Carolyn Graff
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  3. Mona Wicks
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  4. Alicia Diaz Thomas
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Corresponding author

Correspondence to Lacretia Carroll.

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Conflict of interest

The authors declare there is no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Tennessee Health Science Center Institutional Review Board and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants in the study.

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Carroll, L., Graff, C., Wicks, M. et al. Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia. Qual Life Res 29, 673–681 (2020). https://doi.org/10.1007/s11136-019-02350-2

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  • DOI: https://doi.org/10.1007/s11136-019-02350-2

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