Date of Award

2021

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

College

College of Nursing

First Advisor

Sarah Miller

Second Advisor

Susan Newman

Third Advisor

Lillian Christon

Fourth Advisor

Patrick Flume

Abstract

There is a lack of exploration into if, and how, adults with cystic fibrosis experience social isolation, a social condition associated with detrimental physical and psychological effects. Adults with cystic fibrosis experience barriers that may enhance the risk of social isolation, such as time-consuming treatment modalities, hospitalizations, fatigue, activity intolerance, and recommendations encouraging segregation from others with cystic fibrosis to prevent respiratory pathogen transmission. Additionally, these barriers may be augmented by social distancing guidelines related to the SARS-CoV-2 pandemic. While adults with cystic fibrosis have needed to long adhere to infection control guidelines with others with cystic fibrosis, this social distancing now extends to their whole social network. The purpose of this dissertation was to address this gap in knowledge. The concepts of social isolation and social support and their relationship to this population were investigated through an integrative review, which further supports this gap. A subsequent integrative review explored coping in adolescents and adults with cystic fibrosis; the findings of this review will be relevant when designing future studies. The final step in this dissertation was gaining a preliminary understanding of objective and subjective social isolation in adults with cystic fibrosis through the following aims, using Cornwell and Waite’s Model of Social Isolation: Aim 1: To evaluate the process and resources of the proposed study methodology using Tickle-Degnen’s feasibility model in preparation for future studies of social isolation in adults with cystic fibrosis; Aim 2: To develop a preliminary characterization of social isolation in adults with cystic fibrosis using a parallel convergent mixed methods approach; Sub Aim 2a: To measure objective and subjective social isolation using the Patient-Reported Outcomes Measurement Information System - Social Isolation Short Form 8a Scale and the Lubben Social Network Scale – Revised version; Sub Aim 2b: To identify preliminary signals of relationships between objective and subjective social isolation, demographic data, health information, and health-related quality of life; Sub Aim 2c: To elucidate experiences and perceptions of objective and subjective social isolation using semi-structured interviews; Sub Aim 2d: To compare and contrast the relationship of objective and subjective isolation through the triangulation of quantitative and qualitative data. The results of this mixed-methods feasibility study indicate that while there are opportunities to improve recruitment strategies, survey methods, and interview questions, this study design is a feasible approach for future work. Results reveal that participants were relatively healthy and, overall, experienced less social isolation than others with chronic illness. While exploring preliminary signals, relationships between objective and subjective social isolation, as well as relationships between many of the Cystic Fibrosis Questionnaire - Revised domains and subjective social isolation were discovered. Qualitative exploration revealed five main themes: importance of socialization and social support, effect of cystic fibrosis on socialization, feelings of isolation, importance of cystic fibrosis-specific support, and COVID-19-related socialization and support. Quantitative data was supported by qualitative data during triangulation. This study provides an initial glimpse of how adults with cystic fibrosis experience social isolation.

Rights

All rights reserved. Copyright is held by the author.

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