Web-Based Psychological Support Is Effective for Parents of Kids with Rare Disease

Rare Daily Staff

About half of rare diseases have symptoms that arise in childhood. These often carry an uncertain prognosis and can create anxiety and depression for parents, who often have limited access to appropriate psychological care.

Parents of children with rare diseases may experience emotional shock and acute distress, but the situation can be worsened by job demands or the financial burden of having to give up working to care for a child. The researchers said parents often do not seek conventional psychosocial care for themselves because it would require additional time and emotional resources.

Getting access to such care is also an obstacle. In Germany, there are long wait times for standard psychotherapeutic care and the researchers point to past studies that show a small percentage of parents of children with a rare disease seek psychotherapeutic interventions for themselves.

A study from researchers in Germany and Austria published in the Orphanet Journal of Rare Diseases, studied whether a web-based psychological support program for caregivers of children with chronic rare diseases could reduce parental anxiety, fear of disease progression, and depression, while also improving their quality of life and strategies for coping.

The study involved 74 German-speaking parents caring for a child with a rare disease or suspected of having one. The researchers relied on parental self-reported anxiety symptom level as a primary outcome measure for the study.

The study found that the web-based care was effective in reducing anxiety, fear of disease progression, and depression, while also enhancing parents’ coping strategies and quality of life. It found a statistically and clinically significant reduction in anxiety symptoms, fear of disease progression, and depression compared to a group who relied on treatment as usual through the German healthcare system. The improvements were sustained at the six-month follow-up assessment.

There was, however, no significant difference between the people who received web-based care versus treatment as usual. But it did show that a web-based approach is feasible for parents of children with a rare disease.

The results are encouraging in showing that web-based care to address the psychosocial aspects parents of a child with a rare disease can be effective. Given the tendency for parents to neglect their own such needs when caring for a child with a rare disease and the barriers they face in accessing care, it should encourage providers to introduce alternatives to traditional care to address these people who have an unmet need.