Significant Others and Vestibular Disorders: an exploration of Third-Party Disability

Abstract

Vestibular disorders can have debilitating impacts on a person’s life, such as increased risk of falling, depression, and anxiety, among others. This may have impact on the lives of family members. Understanding the experiences of Significant Others (SOs) can assist health professionals in providing effective, family-centred management; however, little is currently known about the experiences of SOs in vestibular disorders. It is anticipated that SOs experience limitations to their daily functioning; a phenomenon known as Third-Party Disability. Third-Party Disability can be better understood by mapping impact to the World Health Organisation’s International Classification of Functioning, Disability and Health (WHO-ICF) framework. Understanding Third-Party Disability is crucial to tailoring management in this population and maximising functioning.

Study 1: An exploration of significant others’ experience with ongoing vestibular disorders Aim: To understand the experiences of living with ongoing vestibular symptoms from the perspective of SOs. Method: Ten in-depth, semi-structured interviews were conducted with SOs of people with vestibular symptoms. A phenomenological thematic analysis was conducted to capture the essence of being a SO to somebody with ongoing vestibular symptoms. Key findings: Four themes were identified in the data. - Journey The progression of learning to understand, cope and adapt with a family member’s vestibular condition is a unique journey; - Ownership Participants reported varying levels of ownership of their family member’s vestibular condition; - Intangibility Participants reported inconsistent advice from healthcare professionals, struggles with understanding, and challenges obtaining a shared understanding with their own support networks; - Disempowerment SOs were left feeling powerless due to not knowing what to do for a family member when they experienced vestibular symptoms.

Study 2: Third-Party Disability in ongoing vestibular disorders through the lens of the ICF framework Aim: To describe Third-Party Disability in SOs of people with vestibular disorders using the ICF framework. Method: Ten in-depth, semi-structured interviews were conducted with SOs of people with vestibular symptoms. Data were linked to the ICF framework. Key findings: SOs reported fewer social outings, psychological impact such as negative emotions, increased domestic responsibilities, and impeded leisure time, among other things. Modifiable contextual factors included healthcare professionals providing clearer information, increased support from social networks and better accessibility to medical care.

Study 3: Involvement and Disability: a pilot validation of two surveys for significant others in cases of vestibular disorders Aim: To develop and perform pilot validation on two surveys to measure SO involvement and disability. Method: Two surveys (involvement and disability) were developed. Twenty-eight SOs responded to the surveys. Cronbach’s alpha analysis was conducted to determine internal consistency. Key findings (Involvement survey): Initial evaluation of internal consistency was non-ideal (Cronbach’s alpha=0.69) but with systematic omission of questions, adequate consistency was achieved (Cronach’s alpha=0.83). Key findings (Disability survey): Initial internal consistency (based on Cronbach’s alpha) was excellent (Cronbach’s alpha=0.96). No questions were omitted.

Conclusions SOs experience marked changes in their everyday lives in the form of third-party disability. Healthcare professionals can address this problem by practicing family-centred care in vestibular consultations and measuring outcomes of family-centred management options using the tools developed in this study.