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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. 

Custody & Caring Conference

Custody & Caring Conference

A research team from Penn State University and Klein Buendel gave three presentations on their recent work related to the care of persons aging and dying in prison at the 18th Biennial International Conference on the Nurse’s Role in the Criminal Justice System. The Custody & Caring Conference was held in Saskatoon, SK, Canada on September 20-23, 2023.

Podium Presentation and Poster 1

“Small-Scale Usability Testing: E-learning Modules for Peer Caregivers”

Growing numbers of people globally will grow old and die while incarcerated. Research evidence supports using peer caregivers to assist staff with geriatric and end-of-life care. Currently, peer caregiver training varies widely in content and duration. Evidenced-based, accessible, and contextually relevant materials are needed to effectively prepare the caregivers. This study’s purpose was to conduct research and development of Just Care, a six-module e-learning program for peer caregivers and a single module to guide corrections staff in implementing the program. University IRB, U.S. Department of Health & Human Services, and Department of Corrections permissions were obtained, and participants signed informed consent. Deputy Wardens assisted in identifying people meeting our inclusion criteria. Nineteen people living in prison and 11 staff took part in the usability testing of the progam. Researchers directed participants to share their thoughts aloud. Field notes were taken. Participants completed six open-ended questions and the System Usability Scale (SUS).

Findings focused on functionality, design, and content of Just Care. All users easily navigated through the program with minimal guidance. Many noted Just Care’s utility for future peer caregivers. Challenges faced were clustered by level of severity from 1-3 (1=most; 3=least severe). There were no severity-level 1 issues in either round. In Round 1, Just Care received a SUS score of 87.5 by incarcerated users and 74.5 by staff. A SUS score of 68 is an above average score. Following rapid refinement, Round 2 incarcerated participants scored Just Care at 85.28 while staff scored it at 83.75. Some incarcerated users had difficulty navigating the post-test assessments in Round 2. 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. Overall, participants found Just Care easy to navigate with interactive content that is very useful, engaging, and relevant to providing geriatric and end-of-life care in prisons. Staff also noted that Just Care raised awareness about the growing need for programming on geriatric care in prisons and that a peer caregiver program like Just Care is a viable solution that is implementable by prison staff.  

Poster 2

“Determining Priority Dementia Care Training Needs for Correctional Staff and Peer Caregivers”

People aged 50 and older in prisons are at particular risk for developing Alzheimer’s Disease and Related Dementias (ADRD) due to several social determinants of health. The number of patients in prison with ADRD is not known. This situation can likely be attributed to many corrections health, social, and security staff lacking the requisite skills for identifying ADRD. Dementia care inequities between prisons and community settings need to be addressed. A standardized, feasible, and acceptable ADRD education program developed for those caring for and/or managing people who are incarcerated and living with ADRD is a pressing need.

The key purpose of the research was to identify three priority learning needs of multidisciplinary prison staff to provide enhanced management and care for people living with ADRD in prisons which also represented the critical learning needs of peer caregivers so that they may assist staff with ADRD care. The study also sought to identify a logo to brand the new Just Care for Dementia training. The third outcome was to translate best practices from community-based ADRD care into accessible and relevant content for training staff and peer caregivers that is evidence-based and can be programmed into highly interactive prototype e-learning modules that fit within the restrictive context of corrections. Focus group methodology facilitated potential future users input to aid us in ensuring the content, design, and technology plans match the needs and constraints of prison. Approvals were secured from the: Institutional Review Board; federal government; and Department of Corrections. Participants provided signed informed consent. The settings were one men’s and one women’s state prison in the United States. Twelve interdisciplinary staff and 11 peer caregivers participated.

Thematic analyses revealed three priority content areas: fostering a safe and calm environment; addressing behavioral and psychological symptoms of dementia; and enhancing awareness of need. Insights on nine showcased logos revealed two clear preferences. Consultation with the study’s advisory board informed final logo selection for branding the Just Care for Dementia e-learning product. In conclusion, participants confirmed the need for a such a training program and indicated this is a viable approach to addressing a pressing training and related 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 (Penn State) and Dr. Barbara Walkosz (Klein Buendel), Multiple Principal Investigators]. Collaborators on the presentation and posters also included Dr. Erin Kitt-Lewis, Mr. Sherif Olanrewaju, and Ms. Katherine Aiken from The Penn State University; and Mr. Brandon Herbeck, Ms. Amanda Brice, and Mr. Steve Fullmer from Klein Buendel.  

Usability Testing of Just Care Modules in Prisons

Usability Testing of Just Care Modules in Prisons

Prison population demographics are shifting such that many people will grow old and spend their final days in prison. Research evidence supports using peer caregivers to assist prison staff with providing supportive care. However, the training received by peer caregivers varies widely. Evidenced-based, accessible, and contextually relevant learning materials are needed to effectively prepare peer caregivers for their role.

A research team from The Penn State University Ross and Carol Nese College of Nursing and Klein Buendel have developed Just Care, a six-module e-learning program designed to augment the face-to-face training that is typically provided to peer caregivers. Small-scale usability testing of the Just Care program was conducted with twenty men and women, who are incarcerated, and ten staff members at one men’s and one women’s state prison in a southeastern state. Two rounds of usability tests were conducted via a video-conferencing platform. The results of the usability tests were recently presented at the annual conference of Academic Consortium on Criminal Justice Health (ACCJH) in Raleigh, North Carolina on April 13-14, 2023.

Most users, who were incarcerated, did activities without aid and no tasks or programming issues were identified that made it impossible to use the application as intended. However, a few usability and content issues were noted including: (a) some users did find the x-ray scanner activity challenging when trying to drag the scanner across the body image to reveal symptoms as death approaches; and (b) a few staff users noted that the returning citizens’ video testimonials in the Staff Module lacked racial diversity.​

The System Usability (SUS) scores for each round respectively were 87.5 (incarcerated), 74.5 (staff); and 85.28 (incarcerated), 83.75 (staff). A SUS score of 68 is considered above average. Overall, both participant groups found Just Care easy to navigate with content that is interactive, useful, engaging, and relevant. Prison staff noted that Just Care raised awareness about peer caregivers’ need for training to help care for older people in prisons.

Next steps for the research team is to address the issues raised in the usability tests and prepare for large-scale usability testing to be conducted in state prisons in the summer and fall of 2023. This research was funded by an STTR grant to Klein Buendel from the National Institute on Aging [AG057239; Dr. Susan Loeb (Penn State) and Dr. Barbara Walkosz (Klein Buendel), Multiple Principal Investigators]. Collaborators on the ACCJH poster presentation also included Dr. Erin Kitt-Lewis, Mr. Sherif Olanrewaju, and Ms. Katherine Aiken from The Penn State University; and Ms. Amanda Brice and Mr. Steve Fullmer from Klein Buendel.