130636 W-2Irene Mitchelhill is the Clinical Nurse Consultant in Paediatric Endocrinology at the Sydney Children’s Hospital, Randwick NSW Australia. Since 1980, Irene has worked in the field of Paediatric Endocrinology, developing expertise in the assessment of growth and development of children and adolescents with hormonal irregularities.

Long-term experience in the field of endocrinology has led Irene to develop education programs for families with children with both adrenal and growth hormone deficiencies. Given the significant psychosocial impact these conditions have on families, developing a necessary education process, and a network through which these families can gain adequate support and knowledge to manage their child’s condition is an essential component of any education process.

Irene’s interest in Congenital Adrenal Hyperplasia (CAH) developed over her many years of experience in working with these families. Identifying the need to support the parents of these children and their families, to cope with the psychological impact of the diagnosis and long-term management of the condition, led to the development of this education program. Included in this process are the extended family members, as they provide significant emotional support for parents in coming to terms with the diagnosis.

The management of CAH requires specific expertise and understanding in order to ensure a positive psychosocial outcome for the child. The lack of relevant and validated information available to these families, and the concern for the psychosocial impact of the condition, led Irene to develop a detailed and comprehensive psychosocial education program (PEP) titled “The CAH Family Workshop”, as part of a Master of Nursing (Hons) program through the University of Technology, Sydney, NSW Australia. Engaging professionals, with experience in the field of endocrinology, to contribute to the content of the program was a primary focus of the program’s development, along with the support of experienced personnel in audio-visual and graphic design. Validation of the program was conducted as part of this process, with the families participating in the program, from one of the three tertiary Children’s Hospitals in NSW Australia.

Irene’s awareness of the lack of resources for families living in rural and remote regions of NSW and Australia, as well as the neighbouring countries in South East Asia, specifically Vietnam, and Indonesia, saw Irene develop the program into a DVD format, which was then translated into both of these languages with the support of volunteer medical professionals and health services interpreters responsible for the translation.

I thank all the health professionals for their contribution to this project, the families who participated in the education programs, and the support of the local CAH Support Group of Australia (CAHSGA), and Caring Living As Neighbours (CLAN) for having the sight to suggest this as a necessary resource for developing countries.

Irene Mitchelhill. RN, RMN, CNC, MACN.
BHSc.(Nursing), Master of Nursing (Hons)
Certificates in Paediatrics, Child and Family Health.
Graduate Certificate in Women’s Health.