Adrenal Insufficiency in Young Children: a Mixed Methods Study of Parents' Experiences.

Research into adrenal insufficiency (AI) and congenital adrenal hyperplasia (CAH) in children has focused largely on clinical consequences for patients; and until recently, the wider experience of the condition from the perspective of other family members has been neglected. In a mixed methods study, we captured the experiences of parents of young children affected by AI/CAH, including their views on the psychosocial impact of living with and managing the condition. Semi-structured interviews were carried out in the UK and an online survey was developed, translated and disseminated through support groups (UK and the Netherlands) and outpatient endocrinology clinics (Germany). Challenges associated with diagnosis, treatment, support and the future were identified. For UK parents, the diagnosis period was characterised by a lack of awareness amongst healthcare professionals and occurrences of adrenal crisis. Parents reported burden, anxiety and disruption associated with the intensive treatment regimen. Parents adjusted and gained confidence over time yet found delegating responsibility for medication difficult and worried about the future for their child. Access to psychological support and contact with other families was reported as highly beneficial. The findings of the study provide critical context for future studies and for informing how parents and families can be better supported. Prenatal genetic counselling for parents who already have an affected child will include an explanation of recurrence risk but should also focus on providing information and reassurance about diagnostic testing and care for their newborn.

An overview of the nursing issues involved in caring for a child with adrenal insufficiency.

Adrenal insufficiency is an endocrine condition defined as the inadequate production or action of glucocorticoids, principally a steroid hormone called cortisol. While rare in childhood, it carries the risk of adrenal crisis in the event of a child becoming unwell as a result of intercurrent illness, injury or surgery. Children's nurses must be vigilant in caring for a child with adrenal insufficiency and have a clear understanding and awareness of the principles of emergency management at home and in hospital.

Managing the patient with transsphenoidal pituitary tumor resection.

Patients who undergo transsphenoidal pituitary tumor resection require a multidisciplinary team approach, consisting of a neurosurgeon, an endocrinologist, and nurses. Successful transsphenoidal surgery needs expert nursing care for early identification and prompt treatment of pituitary dysfunction and neurosurgical complications. Pituitary dysfunction includes adrenal insufficiency, diabetes insipidus, syndrome of inappropriate antidiuretic hormone, and cerebral salt wasting syndrome. Neurosurgical complications may include visual disturbance, cerebrospinal fluid leak, subdural hematoma, and epistaxis.

Adrenocortical insufficiency in the critically ill patient.

The fluid and electrolyte imbalances associated with adrenocortical failure affect multiple physiologic systems in the critically ill patient. Because of its widespread effect, the objective signs of adrenocortical failure may escape recognition. In the context of shock states affecting the function of multiple organs that have been previously diagnosed, empirical evidence suggesting the presence of adrenal insufficiency may be attributed to the primary diagnosis and illness. However, it is most important that critical care nurses question whether adequate adrenal function is present. When effective patient assessment and management are standard components of care, adrenocortical dysfunction may be reversed, while failure to assess for signs of adrenal insufficiency may lead to irreversible patient outcomes. This paper describes phenomena of adrenocortical failure in critically ill patients and presents the problems of fluid and electrolyte imbalance that accompany them.

Fluid volume deficit for the adrenal crisis patient.

Recognition of fluid volume deficit as the critical nursing diagnosis for a trauma victim with primary adrenal insufficiency maximizes the patient's chances for optimal recovery and prevents irreversible, life-threatening sequelae during adrenal crisis. The nurse is a key health care professional in the recognition, prevention, and treatment of this nursing diagnosis for patients with adrenal insufficiency. A case analysis demonstrates the defining characteristics of fluid volume deficit and the rationale for nursing interventions. The controversial use of military anti-shock trousers will also be discussed.

Steroid-dependent states and adrenal insufficiency. Fluid and electrolyte disturbances.

Patients on steroid hormone therapy for chronic adrenal insufficiency experience stable fluid and electrolyte balance. The patient with acute adrenal insufficiency, however, experiences a fluid and electrolyte balance crisis that develops over a few short hours. Nurses in all health care settings need to be alert for patients at risk for crisis and the characteristic symptoms of acute adrenal insufficiency. Nursing interventions aimed at correcting fluid and electrolyte imbalance and providing patient education for prevention of further crisis is critical.