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Just Care for Dementia in Prison

Just Care for Dementia in Prison

A research team from The Penn State University Ross and Carol Nese College of Nursing and Klein Buendel made two presentations related to formative research on the development of Just Care for Dementia at the 36th Annual Scientific Sessions of the Eastern Nursing Research Society April 4-5, 2024 in Boston, MA.

Presentation 1

Title: Dementia Care Training Needs for Corrections Staff and Peer Caregivers

Dr. Susan Loeb, Penn State University

Presenter: Dr. Susan Loeb

The number of people living in prison with Alzheimer’s Disease and Related Dementias (ADRD) is growing. Care inequities for ADRD between prisons and community settings exist and warrant addressing. A standardized, evidence-based, feasible, and acceptable ADRD e-training program is needed to prepare corrections staff and peer caregivers for better managing and caring for people with ADRD in prisons. 

The purposes of this study were to (1) identify three priority learning needs of corrections staff and peer caregivers who manage and/or care for people living with ADRD in prisons; (2) identify a logo for the Just Care for Dementia training that was desirable to end-users; and (3) translate best practices from community-based ADRD care into evidence-based, accessible, and relevant ADRD content for prison settings. The end goal was to program prototypes for three highly interactive e-learning modules that fit within the restrictive context of corrections.

Focus group methodology guided potential future users in providing insights to ensure the content, design, and technology plans match the needs and constraints of prisons. Human subjects approvals were secured and participants’ signed informed consent was obtained. Settings were one men’s and one women’s state prison in the northeastern United States. Twelve corrections staff and 11 peer caregivers participated. Focus groups were audio recorded, transcribed, and deidentified.

Thematic analysis was completed independently by two researchers. The three priority content areas identified were fostering a safe and calm environment, addressing behavioral and psychological symptoms of dementia, and enhancing awareness of need. Participants identified two logo preferences. Advisory board consultation informed logo selection. Module content was developed via an iterative process to ensure contextual relevance of training, accessibility within the constraints of prisons, and the e-training matched identified training needs.

In summary, participants confirmed the need for ADRD training and indicated e-learning is a viable approach for addressing a pressing care need in prisons. 

This research was funded by an STTR grant to Klein Buendel from the National Institute on Aging (AG057239; Dr. Susan Loeb from Penn State and Dr. Barbara Walkosz from Klein Buendel, Multiple Principal Investigators). Collaborators included Dr. Erin Kitt-Lewis and Sherif Olanrewaju from Penn State University; and Amanda Brice and Steve Fullmer from Klein Buendel. 

Presentation 2

Title: Small-Scale Usability Testing: E-learning modules for Peer Caregivers 

Presenter: Dr. Susan Loeb

Growing numbers of people will grow old and die while incarcerated. Research evidence supports using peer caregivers to assist staff with geriatric and end-of-life care. Peer caregivers training varies widely in content and duration. Evidenced-based, accessible, and contextually relevant materials are needed to effectively prepare peer caregivers. 

The purpose of this study was to conduct research and development for Just Care, a six-module e-learning program for peer caregivers and a single module to guide corrections staff in launching the program. Deputy Wardens identified people meeting our inclusion criteria. Nineteen people living in prison and 11 staff participated. Throughout usability testing, participants shared their thoughts aloud, while field notes were taken. Participants completed six open-ended questions, a demographic survey, and the System Usability Scale (SUS).

All users easily navigated through the program with minimal guidance. Many noted Just Care’s utility for future peer caregivers. Some users who were incarcerated had difficulty navigating the post-test assessments. A few staff users noted liking the additional resources available via links to PDFs. One staff user voiced concern about the safety of having incarcerated people help with care. Just Care received Round 1 SUS scores of 87.5 by users living in prison and 74.5 by staff. Following rapid refinement, Just Care received Round 2 mean SUS scores of 85.28 by users living in prison and 83.75 by staff. A SUS score of 68 is an above average score.

Overall, participants found Just Care innovative, useful, engaging, interactive, and relevant to providing geriatric and end-of-life care in prisons. Staff noted that Just Care raised awareness about the growing need for programming on geriatric care in prisons and that a peer caregiver program is a viable solution that is implementable by prison staff.  

This research was funded by an STTR grant to Klein Buendel from the National Institute on Aging (AG057239; Dr. Susan Loeb from Penn State and Dr. Barbara Walkosz from Klein Buendel, Multiple Principal Investigators). Collaborators included Dr. Erin Kitt-Lewis and Sherif Olanrewaju from Penn State University; and Brandon Herbeck, Peter Fu, and Steve Fullmer from Klein Buendel. 

Just Care for Dementia in Prisons

Just Care for Dementia in Prisons

Prison systems in the United States face sharply increased demands in caring for older people living in prisons. Alzheimer’s Disease and related dementias (ADRD) are age-related diseases. Prison health, social, and security staff perceive they lack the skills and knowledge essential for identifying dementia and supporting people who are incarcerated and living with ADRDs.

A research team from Klein Buendel and The Pennsylvania State University (Penn State) are launching a new research project to address ADRD care in prisons. The project is entitled “Computer-based Learning to Enhance ADRD Care in Prison: Just Care for Dementia.” The effort is being led by Dr. Susan Loeb from the Penn State College of Nursing and is being funded by a Phase I STTR grant to Klein Buendel from the National Institute on Aging (AG078103; Dr. Susan Loeb, Principal Investigator).

The mission of Corrections is to provide care, custody, and control for incarcerated individuals. Prisons are required by law to provide adequate care for growing numbers of older people who are incarcerated—a group who are disproportionately at risk for ADRD. This Phase I feasibility project focuses on research and development of highly interactive computer-based learning modules, for prison staff and people who are incarcerated and serving as peer caregivers to promote an integrated systems approach for enhancing the care of people with ADRD in prison.

The project will transform best practices in ADRD care into media-rich, highly interactive, computer-based educational module prototypes and conduct in-person usability testing of the learning module prototypes with corrections staff and peer caregivers to evaluate the user interface, ease of use, and perceived barriers in order to refine the product and optimize implementation in prison settings.

Dr. Loeb is a Professor in the College of Nursing and the Department of Medicine at Penn State University. Her research collaborators include: Dr. Donna Fick, a Professor in the College of Nursing and the Director of the Center for Geriatric Nursing at Penn State University; and Dr. Barbara Walkosz, a Senior Scientist at Klein Buendel. The ADRD modules will be programmed by Klein Buendel’s Creative Team.

Collaborator Spotlight:
Dr. Susan Loeb

Collaborator Spotlight:
Dr. Susan Loeb

Susan J. Loeb, PhD, RN, FGSA, FAAN, is a Professor in the College of Nursing and the College of Medicine at Penn State University. She earned her nursing degrees at Penn State in 1988, 1992 and 2002. She has also received numerous honors and awards, including being a Fellow of the American Academy of Nursing since 2012.

Dr. Loeb’s signature program of research focuses on addressing the health needs of older incarcerated people with chronic conditions, including those in the advanced stages of disease, and extending through their end of life (EOL). Her expertise in multiple methodological approaches is applied to a series of studies including research, development, dissemination, and implementation of a toolkit for training prison staff in strategies to enhance geriatric and EOL care in prisons. This toolkit has more recently been transformed into computer-based training modules, referred to as “Enhancing Care of the Aged and Dying in Prisons.”

She is currently a Multiple Principal Investigator with Dr. Barbara Walkosz, Klein Buendel Senior Scientist, on a study funded by the National Institute on Aging where their team is conducting research and development on a highly interactive and media-rich set of prototype modules based on best practices in peer caregiving in correctional settings. This training is referred to as “Just Care.”

Dr. Loeb and Dr. Walkosz plan to expand their research collaboration into another age-related disease area: Alzheimer’s Disease and related dementias. They hope to transform best practices in Alzheimer’s Disease and related dementias care into media-rich, highly interactive, computer-based educational modules to prepare corrections staff and peer caregivers to meet the growing care needs of people who are incarcerated and living with cognitive decline.

Dr. Loeb’s research has been disseminated through more than 50 peer-reviewed journal articles and numerous conference presentations. She has served as Principal Investigator or Multiple Principal Investigator on five studies funded by the National Institutes of Health and as Co-Investigator on two additional NIH-funded studies.