April 7-9, 2022 • Hyatt Regency • Lexington, KY
Communication Strategies to Promote Comprehensive Well-being
Communication Strategies to Promote Comprehensive Well-being
Abstract: Patients’ Self-Perceived Cancer Burden: Disclosure Decision-Making with Support Persons
Persons with cancer often report perceptions of cancer-related burden when communicating with informal support persons (SPs) about their cancer experiences and health related quality of life (HRQoL). Patients’ perception of cancer burden on SPs is conceptualized as a multi-dimensional construct encompassing frustration, worry, and guilt related to the patient’s dependence on the SP and concerns regarding negative effects of care provision on the supporter’s physical health, mental health, or financial well-being (Cousineau et al., 2003). This study applies the disclosure decision making model (Greene, 2009) to understand how patients’ perceptions of burden on SPs influences patients’ efficacy to communicate about cancer experiences and patterns of sharing or holding back with SPs. Former patients (N = 174) identified as female with breast cancer diagnoses. Participants were recruited as part of a larger project and completed an online questionnaire that focused on what information patients and SPs do and do not share with each other, their oncology providers, and how SPs who are present at most of the patient’s appointments affect communication during oncology visits. Patients’ perceived cancer burden on SPs was measured using a version of Cousineau et al.’s (2003) burden scale with items added to assess SP’s health with a two-factor solution for the perceived cancer burden on SPs scale, including emotional health burden and physical health burden. Patients’ ability to share cancer-related information with SPs was measured using items adapted from prior disclosure literature (Afifi & Steuber, 2009; Greene, 2009). Patients’ perceptions of the breadth of topics shared were measured using a scale adapted from Kornblith et al. (2006) that captured health information disclosure, while withholding information from SPs was measured using the holding back scale (Manne et al., 2010; Pistrang & Barker, 1995) with one item included to assess additional burden perceptions. Correlations demonstrated that patients’ perceptions of disclosure efficacy were positively associated with the breadth of topics shared with SPs and negatively associated with holding back cancer-related concerns from SPs. Patients’ level of perceived emotional health burden on SPs was positively associated with topic breadth and the holding back of cancer-related concerns. Perceived physical health burden on SPs was positively associated with the holding back of cancer-related concerns but was not associated with the breadth of topics shared with SPs. A series of mediation analyses were run to test model hypotheses. Results suggest that disclosure efficacy partially mediates the association between perceived SP emotional health burden and the breath of cancer-related disclosure with SPs as well as holding back cancer-related information from SPs. Results do not provide support for direct association or disclosure efficacy as a mediator in the relationship between perceived SP physical health burden on holding back cancer-related information from SPs. However, disclosure efficacy partially mediates the association between perceived SP physical burden and the breadth of cancer-related information shared with SPs. Findings may contribute to developing supportive interventions that address communication between patients and support persons, bolster patient perceptions of disclosure efficacy, and improve patients’ HRQoL.