Burden of informal caregivers of people without natural speech: a mixed-methods intervention study

Abstract

Background People with disabilities and without natural speech often rely on care provided by informal caregivers. The caregiving situation of these informal caregivers has been poorly researched. The objectives of the study are 1) to identify stressors, resources, and coping strategies among informal caregivers of people without natural speech and 2) to examine whether a complex intervention in augmentative and alternative communication (AAC) that is not primarily tailored to the needs of informal caregivers can reduce care-related burden. Methods The main components of the AAC intervention were (1) initial counselling session, (2) 4 AAC training sessions, (3) 20 AAC therapy sessions and (4) accompanying case management. The control group received only the initial counselling session. Within a quasi-experimental intervention study, survey data on self-perceived burden (Burden Scale for Family Caregivers, BSFC-s) from n = 154 informal caregivers of people without natural speech were collected at three time points between June 2018 and April 2021 from a postal survey. Qualitative interviews with n = 16 informal caregivers were conducted. Results Caregivers reported various stressors such as limited communication with the cared-for person and concerns about the living situation in adulthood. Diverse resources and effective coping strategies, which the caregivers refer to when dealing with stressors, could also be identified. Burden was significantly reduced in the intervention group compared to the control group. According to the results of the qualitative study, AAC use led to better communication skills and a reduction in behavioural problems and thus a decreased burden. Conclusions The AAC intervention seems to have a positive impact on self-perceived burden. Linkages between intervention components and burden reduction as well as stressors and coping strategies could be identified and provide an evidence-based foundation for developing future holistic interventions for families with individuals without natural speech. Trial registration German Clinical Trials Register (DRKS); ID: DRKS00013628 (registered on 05/02/2018).

Update on How to Approach a Patient with Locked-In Syndrome and Their Communication Ability

“…Caring for an individual with LIS can yield a variety of new challenges. Caregivers can often be impacted by a variety of stressors, such as limited or lack of communication with the patient, limited support from loved ones, a large burden of daily responsibilities, a lack of resources for support and information, financial stressors, role change, or isolation [22]. Of note, Zinkevich et al found that caregiver burden is significantly reduced with the implementation of successful AAC interventions.…”