Communicating about Autoimmune Thyroid Disease: Influences on Marriage and Caregiving

Abstract

Autoimmune diseases are one of the most common forms of illnesses in the United States, affecting 23.5 million people (Walsh, 2000). The burden of this disease is disproportionately on women, who sustain 78.8 percent of all cases of autoimmune diseases (NIH, 2002). There is no cure for autoimmune diseases – only a life-long road of treatment of symptoms. Autoimmune diseases are complex to diagnose and treat and on-going social support plays a critical role in patients’ adherence to medications and ultimately their health outcomes. A marriage is a critical source of social support during illness (Segrin & Badger, 2011). Marriage is defined within social support research as “strong-tie” support and is often used as a measure of social support (2011). However, the interpretation of needed support and the perception of received support by married couples may be riddled with challenges due to identity transformation once diagnosed with an autoimmune disease as well as due to lack of communication competence within the relationship. Much research has been conducted to examine marriage and illness through the lens of perceived support. This research extends previous research to examine social support intention and interpretation within the context of marital relationships and communication strategies utilized to enable effective support specifically for autoimmune thyroid disease patients, namely Hashimoto’s Disease and Grave’s Disease. Within the framework of Kreps’ Relational Health Communication Competence Model (RHCCM), this research examined the impact of marital social support, coping, identity transformation, and communication on health outcomes and the influences of marital communication interactions on patients’ perceptions and requests for support as well as their ability to cope with their disease. The study employed both qualitative and quantitative analysis, including a survey of 619 women with autoimmune thyroid disease with questions examining quality of life, coping, communication competence, identity transformation and social support access and perception. Qualified survey participants (n=30) participated in open-ended interviews to further examine social support, illness identity, coping and communication within the context of marriage and their illness. The quantitative results from the survey indicated that low communication competent individuals were significantly less satisfied with their received social support and also had lower perceived quality of life. These results showed support for Kreps’ Relational Health Communication Competence Model (RHCCM). Additionally, perceived social satisfaction scores were higher when support was available from the husband or partner. Qualitative results from the interviews showed that communication strategies most effective for a satisfying relationship during illness were increased open communication about their illness, shared understanding of the disease and agreement on the impact of its symptoms, and inclusion of positive and encouraging tone in provided support. Additionally, communication strategies most effective for illness-related identity changes included validation of changes to identity, attentiveness to symptoms, and using communication to create opportunities for support. Study contributions and theoretical and practical implications were also discussed. Results obtained from both the surveys and interviews will be used to develop evidence-based best communication practices for couples to promote effective social support within marital relationships.