Couples’ Experience of Sensory Loss: A Research and Rehabilitation Imperative

Abstract

Figure: Adobe Stock/Lisa F. YoungThe onset of acquired reliance on sensory impairments—visual, auditory, or their combination—can be a particularly distressing time in one's life. People in this situation typically face emotional, communicative, social, and mobility challenges, such as having to prepare for progressive loss or learning new communication and orientation strategies. Acquired sensory loss of one family member can have a significant impact on the well-being of the entire family, especially the spouse (Lehane. Aging Ment Health 2016;7:1 http://ow.ly/bhov301IAR2). In the context of acquired sensory loss, the presence of a spouse or partner is an important support structure. When asked which areas individuals are most interested in receiving help with, one of the primary responses is managing relationships (Hassinen. Scand J Dis Res 2013;15[4]:325 http://ow.ly/wtgu301IVLM). Considering that sensory loss has the potential to disrupt a couple's communication and social life, it is reasonable to suggest that sensory loss is a shared experience. In this article we aim to highlight the importance of viewing sensory loss as a dyadic experience. For the purpose of research and rehabilitation, the individual with impairment as well as the spouse need to be considered in combination. WHAT DOES RESEARCH SHOW?Figure: Christine M. LehaneIn a recent review of studies on couples’ experiences of sensory loss, we found that the onset of hearing, vision, or dual-sensory loss can lead to significant disruptions in couples’ everyday lives. For instance, spouses of people with hearing loss experienced increased levels of psychological and marital distress, and reported lower levels of social activity compared with spouses of people without a hearing impairment. Similarly, hearing impaired individuals reported higher levels of depression, social withdrawal, and loneliness, compared with non-hearing impaired individuals (Lehane, 2016 http://ow.ly/bhov301IAR2). From a psychosocial perspective, it can be argued that the emotional experience of sensory loss is “contagious,” meaning that the hearing impaired person's emotions may impact their spouses’. In the field of social psychology, this phenomenon is referred to as emotional contagion. Indeed, the idea that spouses living with sensory loss may be experiencing some level of emotional contagion is not new and has received some support in recent literature. For example, in 2002, Goodman and Shippy published an article on emotional contagion in 123 couples living with recent vision loss (Aging Men Health 2002;6[3]:266 http://ow.ly/hC6a301IWck). Their results showed that the likelihood that spouses would report symptoms of depression was high, even when controlling for potential distorting factors such as conflicts with family members, health, caregiving experience, and race. For practical reasons, it can be argued that research and services focusing solely on the individual diagnosed with sensory loss are missing half the picture. Emotional adjustment to sensory loss should be studied and treated as a shared experience. HOW DO WE SUPPORT COUPLES?Figure: Walter Wittich, PhDWhile there are studies that demonstrate the negative consequences of sensory loss for couples, only a few have identified effective coping mechanisms. From these studies, only three coping mechanisms have surfaced: the degree to which partners talk about their experience of the sensory loss, the use of assistive devices, and the management of a strong relationship with one's partner (Lehane, 2016 http://ow.ly/bhov301IAR2). However, these findings do not address some core rehabilitation questions such as: (1) How do couples maintain a close relationship following the onset of sensory loss? (2) Which assistive devices are helpful and how often should they be used? (3) How can we encourage partners to discuss the sensory loss in a manner that supports their adjustment? Such questions demonstrate a need for a more relationship-focused investigation of adjustment to sensory loss.Figure: Jesper Dammeyer, PhD, DMScExisting studies establish sensory loss as a shared experience, so researchers need to focus on identifying coping mechanisms and improving the well-being of whole couples, not just individuals. Until health care providers and researchers recognize the dyadic impact of sensory loss, spouses will continue to be considered solely as a resource for the individual with sensory loss as opposed to being an individual who also needs rehabilitation. Research is needed to better understand both the unique challenges that couples living with sensory loss face and their support needs. WHERE DO WE GO NEXT? In our new international online study on couples’ experiences of sensory loss called Project ISSSL (International Study of Support and Sensory Loss), we view sensory loss as a didactic experience, identify effective coping mechanisms, and address some of the questions presented in this article. The study is longitudinal and will follow a number of couples over the course of one year. Our primary aim is to identify the most effective support and coping mechanisms for couples living with hearing, vision, and dual-sensory loss over time. For more information on the project and details on how to participate, please visit our website www.psychology.ku.dk/isssl or Facebook page: https://www.facebook.com/ProjectISSSL/.