Delays in the diagnosis of hereditary angioedema causes family caregivers to feel fear, anxiety, and uncertainty, according to a study focused on better understanding what these caregivers go through during the diagnosis process.
Giving attention and credibility to family caregivers could not only improve understanding and awareness of the disease but also lead to earlier diagnoses, with fewer unnecessary interventions, the researchers say. Since they are a main source of support for patients, it is necessary for caregivers to be able to define and understand the diagnosis in order to provide care and help manage the disease.
The study, “The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences,” published in the journal Clinical Nursing Research, describes the experiences of family caregivers from the first symptoms of hereditary angioedema.
Getting a hereditary angioedema diagnosis impacts more than just the patient. Their caregivers are also faced with a significant change in their lives that requires them to adapt. However, little research has been done on their experiences while navigating all the unknowns of the diagnostic process.
“However, despite the physical, psychological, and social burden associated with this chronic condition family caregivers’ needs and experiences can go unnoticed,” the researchers wrote.
The study included 16 family caregivers, with a mean age of 45 years old, who had a relative diagnosed with angioedema for a median of 28 years.
Participants first took part in a focus group that began with one question: “Can you tell us about your experiences as a family caregiver of a patient diagnosed with HAE?” At the end of the session, they were given the opportunity to add whatever else they wanted on the topic. After the focus group, they had 10 in-depth, private interviews, lasting an average of 40 minutes, assessing multiple parts of their experiences.
Investigators found that from the first signs of symptoms, the disease is experienced as a whole by the family. However, as with other complex diseases, a delay in identifying and providing a definitive diagnosis is burdensome and has devastating effects on the family.
Family caregivers reported feeling anxiety, fear and grief, which has a significant impact on their quality of life.
“In addition, our caregivers emphasize that they suffer fear, helplessness, and stigma when faced with health care professionals’ lack of knowledge and unwillingness to listen,” the researchers said.
If physicians take the time to involve these family members and explain the disease and its symptoms to them, it will give caregivers a broader understanding of the disease, which will improve their ability to support the patient.
Caregivers reported feeling relief when a final diagnosis was reached, easing their anxiety and allowing them to begin to integrate patient care and disease management into their daily routines. They said that patient associations are a fundamental source of support for themselves and the patient.
Overall, “knowing the experiences of families can help detect needs, improve decision making or reduce stigma,” the researchers wrote.
“Family health nurses can help enhance knowledge, assist in the process of searching for a diagnosis or train patients and family caregivers to administer medication and support care needs,” they concluded.