Exploring caregiver burdens and resources among parents and communication partners of people with hearing loss

OBJECTIVE: Hearing loss is a concern globally which can present challenges for those affected and their communication partners. This study explored the experiences of individuals providing support for people with hearing loss, focusing on caregiver burden. DESIGN: Qualitative in-depth interviews were conducted with communication partners and parental caregivers. Template analysis, guided by Burden of Treatment Theory, explored illness burden (the daily impact of a health condition) and treatment burden (the workload involved in managing care). STUDY SAMPLE: Twenty-seven caregivers of people with hearing loss participated, representing diverse ages and relationship types. RESULTS: Analysis focused on two a priori burden domains: illness burden and treatment burden, while recognising resources that could alleviate burdens. Illness burden included assuming the role of mediator, emotional work, and changes in communication. Treatment burden themes encompassed managing medical and audiological care and maintaining hearing devices and assistive technology. Resources identified included sharing knowledge, empathising with the person with hearing loss, and working as a team. CONCLUSIONS: Caregiving in the context of hearing loss is complex and multifaceted. These findings highlight the potential for targeted resources and support for parents and communication partners to improve experiences of individuals with hearing loss and their supporters.