)ORULGD6WDWH8QLYHUVLW\/LEUDULHV 2018 Qualitative Analysis of Faith Community Nurse Led Cognitive-Behavioral and Spiritual Counseling for Dementia Caregivers Michelle M. Glueckauf, Gabriel Schettini, Jinxuan Ma and Michelle Silva This is an accepted manuscript of Qualitative Health Research. The publisher's version of record is available at https://doi. Follow this and additional works at DigiNole: FSU's Digital Repository.
For more information, please contact lib-support@fsu.edu FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 1 Qualitative Analysis of Faith Community Nurse-led Cognitive-Behavioral and Spiritual Counseling for Dementia Caregivers Michelle M. Glueckauf** Gabriel Schettini** Jinxuan Ma*** Michelle Silva** *School of Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL, 32306-2100. Contact information: mkazmer@fsu.edu / 850-559-2421 (USA) **College of Medicine, Florida State University, 1115 W. ***School of Library and Information Management, Emporia State University, Campus Box 4025, 1 Kellogg Circle, Emporia, KS 66801 Funding Acknowledgements This project was funded by a grant from the Byrd Alzheimer’s Institute to Dr.
Acknowledgements We acknowledge with gratitude the assistance of Dr. Patricia Chipi, Dr. Shuford Davis, Dr. Lance Tegen, and Stephanie Williams in conducting the research.
FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 2 KEYWORDS Alzheimer’s disease; caregivers/caregiving; dementia; families, caregiving; interviews, semistructured; nursing, community; religion/spirituality Abstract This article presents themes emerging from semi-structured interviews with dementia family caregivers in rural communities who participated in an integrative, cognitive-behavioral and spiritual counseling intervention, and with faith community nurses (FCNs) who delivered the intervention. The primary objectives of the counseling intervention were to ameliorate dementia caregivers’ depressive affect and the severity of their self-identified caregiving and self-care problems. The qualitative portion of the study was intended to elicit caregivers’ and FCNs’ perceptions of the benefits and drawbacks of the intervention. We conducted interviews with seven FCN/caregiver pairs four times during the six-month counseling process, totaling 56 interviews.
Themes emerging from the interviews included caregivers’ perception of burden and care partners’ problem behavior; formation of therapeutic alliance between FCNs and caregivers; problem-solving skills, tools, and resources; caregivers’ use of problem-solving strategies; spirituality in caregiving and counseling processes; FCNs’ prior professional experience; and caregiver and FCN time constraints. FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 3 Introduction Eighty percent of adults with dementia receive care in the home from family caregivers, who face challenges that put them at increased risk for depression and compromised physical health (Alzheimer’s Association, 2017; Ory, Yee, Tennstedt, & Schulz, 2000; Ostojic, Vidovic, Bacekovic, Brecic, & Jukic, 2014). Cognitive-behavioral intervention (CBI) has been shown to improve caregiving skills, self-efficacy, depression, and health status in dementia caregivers, but access to such services has been hindered by geographical, financial, and socio-cultural barriers (Brenes, Danhauer, Lyles, Hogan, & Miller, 2015; Glueckauf, et al., 2005; Glueckauf et al. Over the past decade faith community nurses (FCNs), licensed RNs with a sub-specialty in faith-based service provision, have assumed an increasingly large role in delivering CBI to family caregivers, with the potential benefit of aligning such interventions to caregivers’ spiritual beliefs.
FCNs’ community ties, commitment to reducing gaps in health care shortage areas, volunteer service, and spiritual orientation make a compelling case for their involvement in CBI for dementia caregivers (McGinnis & Zoske, 2008; O'Brien, 2018; Rydholm et al. The primary purpose of the overall faith community nurse study was to evaluate the effectiveness of an FCN-delivered cognitive-behavioral and spiritual counseling (CBSC) intervention on changes in depression and the severity of caregivers’ identified caregiving problems and self-care problems. This article reports exclusively the qualitative portion of the study, relating key descriptive findings that include caregivers’ perception of burden and care partners’ problem behavior; formation of therapeutic alliance between FCNs and caregivers; problem-solving skills, tools, and resources; caregivers’ use of problem-solving strategies; spirituality in caregiving and counseling processes; FCNs’ prior professional experience; and FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 4 caregiver and FCN time constraints. The article concludes with implications for caregiver interventions that include spiritual components.
Background Dementia Caregiving Epidemiological studies have estimated 5.5 million adults in the United States have Alzheimer’s dementia, and this figure is expected to reach 13.8 million by mid-century (Alzheimer’s Association, 2017). Worldwide, approximately 47 million people have dementia, with almost 10 million new cases annually estimated by the World Health Organization (2017); Alzheimer’s Disease International (2013) projects 115 million people worldwide diagnosed with dementia by 2050. Symptoms of progressive dementia include increasing memory loss, decline in ability to perform daily routine activities, and disorientation related to time, place, and person. As the illness progresses over time, those with dementia become increasingly dependent on others, especially family members, for assistance in activities of daily living.
There is global acknowledgement of a need for integrated, coordinated care for people living with dementia (Alzheimer’s Disease International, 2016), In the United States, more than 15 million people provide unpaid care for someone with Alzheimer’s or other dementias, and this care is often provided by family members in the home (Alzheimer’s Association, 2017). Family caregivers face various challenges in providing assistance to older adults with progressive dementia, such as monitoring hygiene activities, managing complex medication regimens, and dealing with agitation and aggressive behavior. Caregivers who perform such intensive home care activities often experience significant psychological distress, sleep fragmentation, reductions in social activities, and disrupted family relationships, leaving them at substantial risk for mental health problems, especially depressive FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 5 disorders (Joling, et al., 2015; McCurry, Logsdon, Teri, & Vitiello, 2007; Schulz, Visintainer, & Williamson, 1990; Svendsboe, et al., 2016) and compromised physical health (Gilhooly, et al., 2016; Vitaliano, Schulz, Kiecolt-Glaser, & Grant, 1997). Evidence from meta-analytic studies has found CBI effective in enhancing coping skills and reducing depressive affect in dementia caregivers (Belle et al., 2006; Coon & Evans, 2009; Dickinson, Dow, Gibson, Hayes, Robalino, & Robinson, 2017; Schulz et al., 2003; Sorensen, Pinquart, & Duberstein, 2002), and individual empirical studies have also demonstrated such effectiveness (Gallagher-Thompson et al., 2003; Gaugler, Roth, Haley, & Mittelman, 2008).
CBI has been shown to help dementia caregivers cope with pre-death grief (Meichsner, Schinköthe, & Wilz, 2016; Meichsner & Wilz, 2016) and overall to improve their self-efficacy (Tang & Chan, 2016). Although CBI has shown promise in reducing depression, a substantial gap exists between caregiver mental health needs and available services (Glueckauf et al. Translation of CBI programs to the community has been thwarted by geographic, financial, and socio-cultural barriers. These interventions typically have been performed at health science centers in major metropolitan areas for urban dementia caregivers (Schulz et al.
Dementia caregivers find it difficult to attend any form of group intervention, even locally, due to high costs of and logistical problems in obtaining respite care and transportation (Scott et al. Socio-cultural barriers are also a significant obstacle in translating CBI-based treatment (Wells et al. Individuals tend to be somewhat mistrustful of providers and interventions originating outside their locale, and this is particularly the case when the provider and/or the treatment approach appear to conflict with their family and religious values (e., Glueckauf et al., 2012; Glueckauf et al. FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 6 Religion, Spirituality, and Religious Coping To better understand the coping process of distressed dementia caregivers, researchers have investigated the relationships among spirituality, religion, and caregiving support.
Spirituality and religion are distinct ideas operationalized in different ways. Spirituality generally refers to individuals and their relationship with sacred, transcendent, and meaningful entities beyond themselves; religion incorporates a shared set of beliefs and practices that are developed within a community and provide structure in guiding formal worship practices (Stuckey, 2001, p. Prior research has indicated dementia caregivers use religious coping to help them manage caregiving stressors, but the specific effects of such coping strategies on depression and caregiving burden have varied considerably (Heo, 2014; Rabinowitz, Hartlaub, Saenz, Thompson, & Gallagher-Thompson, 2010; Rathier, Davis, Papandonatos, Grover, & Tremont, 2015; Stolley, Buckwalter, & Koenig, 1999). Spirituality alone has shown inconsistent results with various health-related outcomes among dementia caregivers, with different research studies demonstrating positive associations, negative associations, and no associations between spirituality and caregiver well-being (Hebert, Dang, & Schulz, 2007; Hebert, Weinstein, Martire, & Schulz, 2006; Rathier, Davis, Papandonatos, Grover, & Tremont, 2015; Wilks & Vonk, 2008).
The related concepts of spirituality and self-efficacy have been explored among dementia caregivers to determine their relationship to caregiver well-being, again with varying results, with mediating and moderating effects on depression, anxiety, and anger covarying inconsistently with caregivers’ spirituality and religiosity (López, Romero-Moreno, Márquez- González, & Losada, 2012; Márquez-González, López, Romero-Moreno, & Losada, 2012). FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 7 The present study incorporated spirituality into the framework of CBI, emphasizing development and implementation of problem-solving strategies. 154) stressed the need for “culturally relevant caregiver intervention strategies and programs that incorporate spirituality as a core component,” a need echoed by Sun and Hodge (2014, p. Ennis and Kazer (2013, p.
110), in their review of spiritual nursing interventions for dementia, and Heo (2014, p. 380), in her study of religious coping among dementia caregivers, also emphasized the need for faith-based programs to support dementia caregivers. When nurses are involved in caregiver support, the nurse’s understanding of the caregiver’s spiritual situation is key to supporting their caregiving efforts (Levine, 2011, p. To this end, the current study evaluated the effectiveness of using FCNs to facilitate a cognitive-behavioral spiritual counseling intervention delivered to rural dementia caregivers.
Faith Community Nursing Professional volunteer groups, including FCNs, have begun to assume a greater role in delivering skills-building and support interventions to family caregivers of older adults with chronic illnesses (Glueckauf, et al., 2009; McGinnis & Zoske, 2008; Ziebarth, 2014). The American Nursing Association (ANA) has recognized faith community nursing as a specialty area of practice with published scope and standards of practice (ANA/HMA, 2012). Faith community nursing is a national endeavor involving more than 12,000 nurses across the country (King & Pappas-Rogich, 2011) and holds promise as a community-based practice that may contribute to the reduction of health care costs (Rydholm et al., 2008; Yeaworth & Sailors, 2014) and promote health and disease prevention (Dyess, Chase, & Newlin, 2010; Ziebarth, 2016). Nursing practice that includes spiritual care should include a focus on cues coming from the client or patient about the desirability of spiritual practices, and responsive reflexivity to the FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 8 reactions of nurses and clients to a spiritual encounter (Burkhart & Hogan, 2008).
The development of “caring relationships” between nurses and clients in spiritual nursing is necessary for the desired outcome of “spiritual comfort and well-being” (Carr, 2008, p. The spiritual connection between nurses and clients should be developed in a cyclical, iterative, way that accommodates the background perspectives of both (Hood, Olson, & Allen, 2007). A major advantage of using FCNs as facilitators for skills-building and educational interventions is that family caregivers perceive FCNs as skilled professionals who share their spiritual beliefs and values. FCNs typically deliver education and spiritual support interventions to family caregivers in the home setting, reducing access difficulties commonly faced by dementia caregivers (McGinnis & Zoske, 2008).
FCNs’ strong ties to the community, their commitment to bridging the health care access gap, their spiritual orientation, and the low cost of their volunteer services make collaboration with this professional group in delivering cognitive- behavioral intervention to dementia caregivers a compelling option. Faith Community Nurse Study The purpose of the overarching FCN study (which included parallel quantitative and qualitative components) was to evaluate the effect of the cognitive behavioral spiritual counseling intervention on changes in depression and problem improvement in distressed rural dementia caregivers. The quantitative measures included the Caregiver Self-Efficacy Scale (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002), Caregiver Appraisal Inventory Burden Scale (Lawton, Kleban, Moss, Rovine, & Glicksman, 1989), Center for Epidemiologic Studies Depression Scale (Radloff, 1977), Problem Severity Scale (Glueckauf, 2000), Interpersonal Support Evaluation List (ISEL; Cohen, Mermelstein, Kamarck, & Hoberman, 1985; Schulz & Williamson, 1991) and the religious coping scale of Brief FAITH COMMUNITY NURSE COUNSELING DEMENTIA CAREGIVERS 9 Multidimensional Measure of Religiosity and Spirituality (Fetzer Institute & National Institute on Aging Working Group, 1999).
