Date of Award

2015

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

College

College of Graduate Studies

First Advisor

Susan D. Newman

Second Advisor

Shannon Hudson

Third Advisor

Martina Mueller

Fourth Advisor

Charlton B. Strange

Abstract

Purpose: The purpose of this dissertation was to explore perceptions of social isolation and social support in individuals with one of two rare lung conditions, alpha-1 antitrypsin deficiency (AATD) or sarcoidosis. First, a dimensional concept analysis was conducted to identify key factors contributing to the phenomenon of social isolation. Next, an integrative review of existing instruments to measure social isolation was conducted to identify the most appropriate instrument for the study. Finally, a mixed-methods study was conducted to explore these phenomena in the two populations of interest. Problem: Many rare diseases are chronic, complex and associated with other disabilities (M. Anderson, E. Elliott, & Y. Zurynski, 2013). Over the past three decades, social isolation has been shown to be predictive of mortality and morbidity in both general populations (Brummett et al., 2001; House, 2001; House, Umberson, & Landis, 1988) and in populations with chronic conditions (Berkman, 1995; Berkman & Syme, 1979). A review of the research literature revealed no published studies that explored this phenomenon in rare disease populations, and specifically, in rare lung diseases (Flavin, 2015a). The specific aims of the dissertation were: • Aim 1: To examine the phenomenon of social isolation through the lens of dimensional concept analysis • Aim 2: To conduct an integrative review of instruments designed to measure perceived social isolation • Aim 3: To explore the perceptions of social isolation and social support in individuals with sarcoidosis or alpha-1 antitrypsin deficiency in a pilot study using a convergent parallel mixed methods design. Design: A convergent parallel mixed methods study design, informed by social network theory (Heaney and Israel, 2008) guided the collection of parallel quantitative and qualitative data streams. Findings: In the mixed-methods study, there were statistically significant differences in the Friendship Scale, MOS-SSS emotional support, positive social interaction and total scores between the alpha-1 and sarcoidosis groups, with higher scores observed in those with alpha-1 (indicating more social connectedness and perceived support). Sarcoidosis-affected individuals who participated in support groups reported more social isolation as reflected in the Friendship Scale scores than those who did not participate in support groups (p=0.04). This was not the case in the AATD population, where access to support did not significantly alter isolation scores. Content analysis revealed six themes: Self-reflection, building connections, activities, knowledge, relationships and physical/psychological impact. Triangulation revealed that scores on both instrument measures were supported by the qualitative data in both groups. Conclusions: Individuals with rare conditions do perceive varying levels of social isolation and low social support that may not directly correlate with their reported access to support. The impact of these phenomena is multi-layered and influenced by one’s support network. These findings merit further exploration in the form of larger studies that include more geographically and demographically diverse populations. Findings from this dissertation are significant for nurses and other health care providers because they allow for a more complete understanding of the issues confronted by individuals and their family members who are faced with either one of these conditions.

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