Well-being and Perceptions of Supportive Resources among Caregivers of Patients with Bladder Cancer

Article type: Research Article

Authors: Jung, Ahrang^{a; b; *} | Song, Lixin^{a; b; c} | Snyder, Elizabeth^{b; c} | Louwers, Renata K.^d | Sachse, Karen^d | Chisolm, Stephanie^e | Gore, John L.^f | Smith, Angela B.^{b; c}

Affiliations: [a] School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC | [b] Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC | [c] Department of Urology, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC | [d] Bladder Cancer Advocacy Network, Research Patient Advocate | [e] Bladder Cancer Advocacy Network, Director of Education & Research | [f] University of Washington, Seattle, WA

Correspondence: [*] Correspondence to: Ahrang Jung, PhD, RN, University of North Carolina at Chapel Hill, Carrington Hall, CB#7460, Chapel Hill, NC 27599. Tel.: +1 919 966 3602; E-mail: [email protected].

Abstract: BACKGROUND:The unique burden of treatment and survivorship of patients with bladder cancer can negatively impact caregiver experience and their use of supportive care resources. OBJECTIVE:To assess caregivers’ well-being and their perception of potential supportive resources. METHODS:In this cross-sectional survey, caregivers of patients with bladder cancer (N = 630) were recruited through the nationwide Bladder Cancer Advocacy Network Patient Survey Network. We used stakeholder-developed questionnaires to examine caregiver well-being (i.e., physical well-being, tiredness, fear, worry, sadness), the perceived helpfulness of potential resources (i.e., web-based and print-based information, specialized support, personal stories of other caregivers, phone-call and online chat with other caregivers), and influencing factors. RESULTS:Caregivers more frequently reported emotional well-being as a moderate to serious problem (67% for fear, 78% for worry, 66% for sadness) compared with physical well-being (30% ) and tiredness (47% ). Decreased well-being was associated with female gender of the caregiver, higher than high school education, or caring for a patient with advanced (versus non-invasive) bladder cancer. Of six potential resources, “web-based information” was perceived as “very helpful” among 79% of respondents, followed by “personal stories from other caregivers” (62% ). Caregiver preferences for “web-based information” was not associated with any specific demographic or clinical factors. CONCLUSIONS:Caregivers reported moderate to serious problems with emotional and physical well-being. Web-based platforms were perceived as beneficial supportive resources for bladder cancer caregivers. Future intervention research should target the influencing factors identified in this study to optimize the health outcomes of caregivers and enhance the supportive care resources for improving their well-being.

Keywords: Urinary bladder neoplasms, caregivers, health resources, patient care, social support

DOI: 10.3233/BLC-200412

Journal: Bladder Cancer, vol. Pre-press, no. Pre-press, pp. 1-10, 2020