Perception of Burden by Families of Persons with Auditory Neuropathy Spectrum Disorders: A Pilot Study

Abstract

Background: The heterogeneous nature of ANSD regarding onset, degree of hearing impairment, and non- availability of treatment options has made them more dependent on other family members than those with sensory neural hearing loss. Non-availability of treatment or rehabilitation measures would be a primary factor to add more burdens to the caretakers. No previous studies have explored the perception of burden by families in auditory neuropathy spectrum disorder.Aim: To assess the burden faced by the family, which has a constituent individual with ANSD.Method: The study used a crosssectional design. Eleven patients with ANSD were selected through purposive sampling. The study was conducted at government run tertiary care neuroscience hospital, Bengaluru Karnataka. Tools used: Family burden interview schedule was used to assess the family burden among families of persons with ANSD. The study was approved by the IEC. Results: The results showed a severe burden in financial aspects, a moderate burden in family routine activities, family interaction and mental health of the family members. Mild burden was seen in family leisure activities and physical health of the family members. Most of them (10) have moderate subjective burdens. Conclusion: Moderate family burden was noticed in family mental health, routine activities, and family interaction. Severe burdens were noticed in the family's financial aspect. The age of the patient is positively correlated with the family burden. The psychosocial wellbeing of the family members will have a significant effect on the outcome of the rehabilitation measures.