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Needs and Concerns of Family Caregivers of Persons with Lewy Body Disease (LBD)

Stacy, Kelly E
http://orcid.org/0000-0002-7160-2119
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1627663824224801

Abstract Details

2021, PhD, University of Cincinnati, Nursing: Nursing - Doctoral Program.
Background: Lewy body disease (LBD) is a devastating illness causing life-altering changes for patients and enormous strain for family caregivers. In addition to cognitive impairment common in dementia, people with LBD suffer from visual and executive function impairment, sleep disturbances, hallucinations, gait disturbances, and other issues making caring for them in the home a challenge. As a result, family caregivers often suffer long-term physical and emotional stress related to caregiving responsibilities. While a number of caregiver measures exist in the context of Alzheimer’s disease and related dementias, they do not capture the unique needs and concerns of LBD family caregivers. Aims: The aims of this study were to analyze the needs, concerns, strategies, and advice of LBD caregivers to inform the development of a new instrument to measure the ease or difficulty of LBD caregiving activities, reflective of those needs and concerns. Methods: An exploratory sequential mixed methods design was used to develop the Lewy Body Disease Caregiver Activities Scale (LBD-CAS). In Aim 1, qualitative interviews (N=20) were conducted using open-ended questions to investigate the needs, concerns, strategies, and advice of caregivers of persons with LBD. Content analysis of qualitative data was conducted using a pre-determined code list derived from the needs and concerns framework. Aim 2 was to develop and test content and face validity of the LBD-CAS. Data from Aim 1 informed item development for the LBD-CAS in Aim 2. Content validity was assessed by a panel of 6 experts (i.e., 3 researchers, 3 clinicians). Face validity was assessed through interviews with 6 family caregivers of persons with LBD. Results: The needs, concerns, strategies, and advice from the qualitative study fit 5 domains from the needs and concerns framework: 1) information about Lewy body disease; 2) managing emotions and behaviors; 3) providing physical care; 4) providing instrumental care; and 5) dealing with one’s own responses to providing care as a caregiver. Expert ratings provided evidence of content validity on 49 items within the 5 domains as indicated by an item CVI score of 0.83 or higher. Four items with CVI scores of <0.83 were retained and revised due to conceptual significance. This resulted in a 53-item version of the LBD-CAS. Subsequent face validity testing resulted in no further changes to the scale. Conclusion: The LBD-CAS warrants further psychometric testing in a larger sample for evidence of internal consistency reliability, as well as construct validity. The LBD-CAS has the potential to serve as a) an assessment tool for LBD caregivers; b) an important measure for LBD caregiver research; and c) a foundation for the development and testing of future interventions to support caregivers throughout the trajectory of the LBD disease process.
Tamilyn Bakas, PhD (Committee Chair)
Joshua Lambert, Ph.D. (Committee Member)
Joseph Perazzo, Ph.D. (Committee Member)
Rhonna Shatz, D.O. (Committee Member)
178 p.
Nursing
family caregivers; Lewy body; caregivers; dementia; needs and concerns; dementia caregiver instrument

Recommended Citations

Citations

  • Stacy, K. E. (2021). Needs and Concerns of Family Caregivers of Persons with Lewy Body Disease (LBD) [Doctoral dissertation, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1627663824224801

    APA Style (7th edition)

  • Stacy, Kelly. Needs and Concerns of Family Caregivers of Persons with Lewy Body Disease (LBD). 2021. University of Cincinnati, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1627663824224801.

    MLA Style (8th edition)

  • Stacy, Kelly. "Needs and Concerns of Family Caregivers of Persons with Lewy Body Disease (LBD)." Doctoral dissertation, University of Cincinnati, 2021. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1627663824224801

    Chicago Manual of Style (17th edition)

ucin1627663824224801
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This open access ETD is published by University of Cincinnati and OhioLINK.