"My greatest help comes from the Lord": Religion and the information behaviors of dementia caregivers

Introduction How do religious beliefs, practices and communities affect how caregivers of loved ones with dementia approach information seeking, information use, and information evaluation with respect to their caregiving activities? This paper is based on qualitative data collected via 84 interviews with dementia caregivers and counselors who were involved in two research projects designed primarily to evaluate the efficacy of cognitive-behavioral therapy (CBT) problem-solving interventions in improving depression and reducing stress among dementia caregivers. In one project the interventions were delivered by faith community nurses (FCNs); in the other, by 2 ministers with counseling experience/credentials (this project was called African-American Alzheimer's Caregiver Training and Support, or ACTS). Both studies included quantitative assessments of the efficacy of the interventions, but also incorporated significant qualitative components based on semi-structured interviews. During the interviews, which were conducted with the caregivers and counselors at several points during their counseling experiences, the researchers asked a variety of questions about the counseling experience, problem-solving, goal-setting, materials and training, and the care recipients. There were some questions explicitly about spirituality and caregiving, but caregivers also often talked about their religious beliefs in the context of their caregiving experiences even in response to questions that were not explicitly about religion. The interviews were transcribed and coded using open coding and categorization analysis methods; one project used NVIVO to support the initial coding, the other used Excel, but this combined analysis was completed using Excel. The theme of spirituality was expected to appear in the FCN study, but it also arose from the interviews with caregivers in the ACTS project, leading the researchers to further mine the interview data to answer the question posed at the beginning of this paragraph.