Measures of Cancer-related Loneliness and Negative Social Expectations: Development and Preliminary Validation

Abstract

Loneliness is a known risk factor for poor mental and physical health outcomes in the general population, and preliminary research suggests that loneliness is linked to poorer health in cancer patients as well. Various aspects of the cancer experience (e.g., heightened existential concerns) lend themselves to making patients feel alone and misunderstood. Furthermore, loneliness theory suggests that negative social expectations, which may specifically relate to the cancer experience, precipitate and sustain loneliness. Thus, loneliness interventions in cancer should be tailored to address illness-related social conditions and negative social expectations. Prior to the development of loneliness interventions for cancer populations, cancer-specific tools are needed to assess: (1) loneliness attributed to cancer (i.e., cancer-related loneliness), and (2) negative social expectations related to cancer. In the current project I developed measures of cancer-related loneliness and cancer-related negative social expectations for use in future theory-based loneliness research. A mixed-methods study design was employed. First, I developed items for the measure of cancer-related loneliness (i.e., the Cancer Loneliness Scale) based on theory, prior research, and expert feedback. Second, I conducted a clinic-based qualitative study (n=15) to: (1) obtain cancer patient feedback on the Cancer Loneliness Scale items, and (2) inform development of the item pool for the measure of negative social expectations (i.e., the Cancer-related Negative Social Expectations Scale). Interviews were audiotaped, transcribed verbatim, and then transferred to Atlas.ti for analysis. Content analysis was used to analyze data regarding patient feedback and theoretical thematic analysis was used to analyze data regarding negative social expectations. Overall, patients said they liked the Cancer Loneliness Scale and no changes were made to the items based on patient feedback. Based on results, I also created five content domains of negative social expectations that were represented in the item pool for the Cancer-related Negative Social Expectations Scale. Third, I conducted a telephone and mail-based quantitative study (n=186) to assess psychometric properties of the two new measures. Dimensionality was determined using confirmatory factor analysis. Reliability was assessed by examining internal consistency coefficients and construct validity was assessed by examining theoretical relationships between the Cancer Loneliness Scale, the Cancer-related Negative Social Expectations Scale, and existing reliable and valid measures of health and social well-being. The final products of the project included a 7-item unidimensional Cancer Loneliness Scale and 5-item unidimensional Cancer-related Negative Social Expectations Scale. Excellent evidence for reliability and validity was found for both measures. The resulting measures have both clinical and research utility.