• Burden and Mental Health of Family Caregivers of Cancer Patients: The Impact of Spirituality

      La, In Seo; Johantgen, Mary E. (2020)
      Background: As the primary source of care for individuals with cancer, family caregivers are relied on for treatment support and emotional care during the cancer trajectory. Studies on caregiver burden and psychological sequelae among cancer caregivers have been conducted cross-sectionally. Spirituality has been suggested as a potential buffer between burden and sequelae. Yet, there have been very few longitudinal studies addressing burden, depression, and spirituality, and there is limited information on psychometric properties of the spirituality measures in cancer caregivers. Purpose: The aims of this study were to: 1) evaluate validity of the Spiritual Perspective Scale (SPS) and explore differences in spirituality across caregiver and patient characteristics, 2) describe caregiver burden during active cancer treatment and explore caregiver and patient factors influencing caregiver burden, and 3) examine changes in caregiver burden, spirituality, and depression and explore the moderating effect of spirituality on burden-depression relationship over time. Methods: A secondary analysis of data from a longitudinal study of cancer caregivers from the NIH Clinical Center was conducted. Caregivers completed measures, including the Spiritual Perspective Scale (SPS), Caregiver Reaction Assessment (CRA), and NIH Toolbox and PROMIS® measures. Structural equation modeling and linear mixed modeling were used for testing study aims. Results: The SPS was found to have satisfactory psychometric properties in cancer caregivers. Adjusting for a direct effect of race did not alter the pattern of results, and caregivers who were older, female, racial/ethnic minorities, less educated, affiliated with a religion, and who provided care to anyone other than the patient reported higher levels of spirituality. Baseline mutuality between the caregiver and patient was negatively associated with initial burden. Changes in caregiver burden were related to being spouse caregivers, sole caregivers, and income. Scores on total burden, spirituality, and depression remained stable over time. Caregivers’ spirituality moderated the link between burden and depression (-1.26, p = .025). Conclusions: Higher levels of spirituality may act as a protective factor in the relationship between burden and depression during active cancer treatment. Identified factors related to burden and strategies to strengthen spirituality should be considered to improve caregiver mental health.