A UC Merced researcher is leading an unprecedented study of the impacts of Valley fever on pediatric patients and their families.
With the help of 16 student research assistants, health psychologist Erin Gaab began interviewing young Valley fever patients and their families last spring. The goal, Gaab said, was better insight on the quality of life and psychological functioning of these patients and their caregivers.
A group of the research assistants traveled a total of 178 miles – from as far south as Avenal in Kern County to as far north as Livingston in Merced County – to conduct the interviews.
Gaab and her research group spoke to 22 caregivers and 15 children between the ages of 6 and 18. The families, recruited from Valley Children’s Hospital in Madera, were asked about their well-being, health care experience, perceptions of Valley fever and coping mechanisms.
Collecting data took about eight months and the analysis of it took a few months more. The group is working to publish its research findings in a peer-reviewed journal that’s open to the public.
The study, Gaab said, helped researchers get a glance at the misconceptions, barriers and the emotional toll faced by the young patients’ families.
A number of parents had never heard of Valley fever prior to their child being diagnosed, the researchers learned.
When families began doing their own research on the illness, they relied heavily on the Internet and their neighbors, said Michelle Burrowes, one of the student assistants who will be graduating this weekend.
Many of the children had been living with the disease for quite some time. Some cases were more severe than others, yet many were misinformed about how they had contracted the disease.
Gaab explained that it was not uncommon to find that many of the affected families were not aware that Valley fever is a fungal infection; some thought the disease arose from chemicals sprayed on agricultural fields.
Valley fever, also known as the “silent epidemic,” is caused by coccidioidomycosis, a fungal parasite found in soil. The fungus is known to be common in dry, low rainfall areas of the United States, such as the San Joaquin Valley.
In many cases, the illness can manifest itself in the form of a minor cold. Fever, cough, headaches and muscle aches are common symptoms. More severe cases can develop into pneumonia or meningitis.
Some of the families, Burrowes said, found answers and information online, but others either did not have access to the internet or could not find answers in the language they were most comfortable with.
“During our interviews, people had questions and would ask us for help,” Burrowes said. “They saw us as experts.”
Gaab said that because they are not medical experts, the group collected questions from the families and got answers for them from doctors such as Dr. Fouzia Naeem, a pediatrics infectious-disease specialist at Valley Children’s Hospital.
The researchers said some parents also shared that their children were misdiagnosed several times before their health problems were linked to Valley fever.
“Unfortunately, not many health care providers know much about Valley fever,” Gaab said. “So families end up having to travel quite far for treatment.”
A family from Bakersfield, for example, had to drive almost two hours to Madera. Sometimes this trip was made weekly.
The researchers also asked questions about the stress and emotional toll that dealing with the illness causes.
Families reported responses of isolation and helplessness.
Gaab said many parents expressed interest in a Valley fever support group, similar to those available for families of cancer patients. “Most families don’t know other people with Valley fever, so they feel isolated,” Gaab said.
Parents said they felt helpless when seeing several rounds of medication administered to their children. Severe cases, Gaab said, are treated with anti-fungal medication known as Amphotericin B, which can have side effects such as nausea, vomiting and blistering.
At least one parent also expressed stress over treatment costs. Medi-Cal did not cover the needed medication, according to the parent.
The researchers said one of the most surprising findings was that many of the children did not understand why they were hospitalized.
“Some were very ill, but others felt fine and wondered why they were there (in the hospital),” she said. “It just speaks about the amount of variance (in Valley fever).”
Researchers also found that some of the younger patients blamed themselves for contracting the illness; they believed they had become ill because they had behaved poorly.
Last month, Gaab presented her research at a Valley fever conference in San Diego. She said she was pleased that the attendees, mostly medical doctors, were appreciative and empathetic.
“I was quite relieved with the reaction,” she said. “I think they know it’s important that we look at the patients’ quality of life.”