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E-learning modules for peer end-of-life caregivers living in prison

E-learning modules for peer end-of-life caregivers living in prison

A research team led by Dr. Susan Loeb from Penn State University and Dr. Barbara Walkosz from Klein Buendel, has published results from a recent study in the Journal of Offender Rehabilitation. The paper reports findings from the usability testing of the Just Care electronic learning program for training carefully vetted people living in prison to assist staff with geriatric and end-of-life care. 

Aging is accompanied by an increased probability of health problems and subsequent need for health care. According to the authors, “The growing number of older adults living in prison, who will likely age and die in prison, calls attention to the challenge of how correctional facilities will care for this population’s health needs, which includes the increasing demand for geriatric and end-of-life care.” Training men and women who live in prison to assist corrections staff with the care of growing numbers of older, sicker, cognitively impaired, and dying people in prison is an innovative and viable option to help meet pressing care demands. 

Two rounds of usability testing were conducted via videoconference. Prison personnel (such as corrections specialists, supervisors, nurses, and chaplains) and people living in prison were recruited from one men’s prison and one women’s prison. Fifteen participants completed the testing in each of two rounds. Methods and analyses are described in the paper.

Results include participant demographics, concerns and areas for improvement by severity level of programming, and mean scores for both participant groups on the System Usability Scale.  Overall, both the incarcerated and staff participants found the program easy to navigate and the interactive content was useful, engaging, and relevant to caring for incarcerated aging and dying people. The findings helped refine Just Care before additional evaluation was conducted with a larger sample.

This research was funded by an STTR grant to Klein Buendel from the National Institute on Aging (AG057239; Dr. Susan Loeb and Dr. Barbara Walkosz, Multiple Principal Investigators). The lead author on this Journal of Offender Rehabilitation paper is Dr. Erin Kitt-Lewis from Penn State University. Additional authors are Dr. Susan Loeb and Mr. Sherif Olanrewaju from Penn State University; and Dr. Barbara Walkosz, Mr. Brandon Herbeck, and Mr. 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.  

Evaluation of the ECAD-P Program for Prison Staff

Evaluation of the ECAD-P Program for Prison Staff

There are nearly 2.3 million people incarcerated in U.S. prisons. Many grow old there and need end-of-life care. Geriatric and end-of-life care in Corrections is not as equitable as care in the free world. The results of a study led by researchers from Penn State University and Klein Buendel were published recently in the International Journal of Prisoner Health. The research team developed and evaluated the technological delivery of geriatric training for prison staff as a novel approach to improve care and reduce disparities among those who are most vulnerable during confinement.

Evaluation of the ECAD-P computer-based learning program occurred at seven sites, including six state prisons and one prison healthcare vendor. A total of 241 staff were recruited and 173 completed posttesting. The outcomes were (a) knowledge acquisition regarding care for aging and dying incarcerated persons, and (b) attitudes, motivations and values for providing geriatric and end-of-life care. Staff improved their knowledge and affective indicators after receiving the training. ECAD-P was determined to be acceptable, feasible, and usable in Corrections.

Correctional settings face increasing pressures to better address the healthcare and management needs of aged, chronically ill, and dying incarcerated persons. ECAD-P may contribute to better preparation of Corrections staff to effectively care for these populations.

This research was funded by a Small Business Technology Transfer grant to Klein Buendel from the National Institute on Aging at the National Institutes of Health (AG049570; Dr. Susan Loeb and Dr. Valerie Myers, Multiple Principal Investigators). The authors of this publication are Dr. Valerie Myers, formerly of Klein Buendel; Dr. Susan Loeb and Dr. Erin Kitt-Lewis from the Ross and Carol Nese College of Nursing at The Pennsylvania State University; and Tiffany Jerrod, formerly of Klein Buendel.

Promoting Health Equity for Diverse Populations During a Pandemic

Promoting Health Equity for Diverse Populations During a Pandemic

Dr. Susan Loeb, PhD, RN, FGSA, FAAN, from the Pennsylvania State University College of Nursing and College of Medicine – and an active Klein Buendel research collaborator – presented on promoting health equity during the COVID-19 pandemic at 34th Annual Scientific Session of the Eastern Nursing Research Society on March 31 through April 1, 2022 in Providence, Rhode Island. The theme of the conference was “Charting the Path of Diversity, Equity, and Inclusion Through Nursing Science.”

The interruption of face-to-face human subjects’ research by universities and correctional institutions due to the COVID-19 pandemic has necessitated researchers to adopt alternative approaches for proceeding with their work. Adaptations and strategies that the research team employed to keep their study progressing forward in meaningful ways despite a protracted public health emergency were presented. A study focusing on the research and development of highly interactive e-learning modules to prepare incarcerated people to assist corrections staff in caring for people are older and/or approaching the end of life in prison served as an exemplar for the presentation. The study – the Inmates Care Project – is an STTR grant awarded to Klein Buendel by the National Institute on Aging (AG057239; Dr. Susan Loeb and Dr. Barbara Walkosz, Multiple Principal Investigators).

The theoretical framework for the study is the Institute for Healthcare Improvement’s Framework for Going to Full Scale. Identification of barriers and facilitators, re-envisioning how the team would restructure their day-to-day work, and preparing for the future are just a few of the essential steps that were taken. Examples of daily restructuring included a) approach to weekly team meetings; b) data collection protocols; c) advisory board meetings; and d) opportunities for networking and community building.

Key lessons learned through this experience included the a) importance of taking stock and seizing the opportunity to make investments in team member development; b) writing protocols that detail both in-person and virtual options for data collection to allow the team to pivot quickly when the next challenge arises; and c) reaching out to brainstorm with funding agency program officers, Institutional Review Board analysts, advisory board members, and other researchers from beyond your team.

Well-thought-out adaptations that are approved by funding agencies, offices of research protections, and other stakeholders in the research can result in scientifically sound, public health safe, and pragmatic approaches for moving ahead to remain research-productive, despite public health challenges. Taken together, these approaches can maintain study progress, and scientific integrity, as well as identify alternate ways to achieve study aims in a timeline necessarily relaxed, but as close as possible to the original plan.

Co-authors on the presentation and top poster included Dr. Erin Kitt-Lewis, Sherif Olanrewaju, and Leigh Casey from Penn State University; Dr. Valerie Myers and Savanna Olivas formerly from Klein Buendel; Jeannyfer Reither from Klein Buendel; and Katherine Aiken from the Penn State College of Health and Human Development.

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.

Inmates Care

Inmates Care

Whether one reaches the end of his or her life in a private home, a nursing home, or a correctional facility, the need for quality, compassionate palliative care is universal.

The demographics of the American prison population are shifting at a dramatic rate requiring new approaches to prison healthcare. Current estimates suggest that there are 2.3 million incarcerated persons in the United States (1). Similar to the free world, the aging of the Baby Boom generation is occurring in prisons. Notably, inmates 50 and older constitute over 20% of prisoners in state or federal facilities (2). Many sentenced offenders are living through middle and older adulthood within the confines of prisons (3,4). These trends profoundly impact prison systems that are legally responsible for providing needed care to prisoners along with ensuring their custody and control (5). The health status of aging inmates does not mirror the free world population. Prisoners typically present with health issues common to free citizens who are 10 to 15 years their senior. Collectively, these trends have had a profound impact on prison systems and prisons are facing sharply increased demands in caring for aged and dying inmates.

Dr. Susan Loeb of Penn State University and Dr. Valerie Myers of Klein Buendel (Multiple Principal Investigators) are leading a new research project being awarded to Klein Buendel entitled, E-training of Inmate Peer Caregivers for Enhancing Geriatric and End-of-Life Care in Prisons – the Inmates Care Project. Inmates Care is a computer-based interactive training system designed to provide inmate peer caregivers with training in geriatric and end-of-life (EOL) care. Broadly defined, EOL care is the care provided to persons in their final stages of life; also referred to as hospice care, comfort care, supportive care, palliative care or symptom management (6). The Inmates Care system will provide rigorous, evidence-based best practices through media-rich and highly interactive computer-based learning modules for providing EOL and geriatric care to prison peers. It will function within institutions’ technology and connectivity limitations and be much more engaging and interactive than the educational programs commonly available to those living in prison.

Prisons are facing sharply increased demands in caring for aged and dying inmates (7). Inmates offer an abundant human resource that is poised to contribute in important ways to augment corrections staff in meeting a growing care need in U.S. prisons. This new study will refine and expand the modules that were usability-tested in a previous study and evaluate the full program for its fit with inmate peer caregivers within the restrictive constraints of prison systems. Expanded testing of Inmates Care will establish its effectiveness as a program and will provide critical insights relevant to its dissemination and implementation with correctional facilities.

This Phase II research project is funded by a Small Business Innovation Research (SBIR) grant to Klein Buendel from the National Institute on Aging at the National Institutes of Health (AG057239). Dr. Erin Kitt-Lewis from the Penn State University College of Nursing is a Co-Investigator. The CBL modules will be programmed by the Creative Team at Klein Buendel.

References

1. Sawyer W, Wagner P. Mass incarceration: the whole pie 2019. Prison Policy Initiative. Available at: https://www.prisonpolicy.org/factsheets/pie2019_allimages.pdf. Published 2019 March 19. Accessed August 30, 2019.

2. Bronson J, Carson EA. Prisoners in 2017. Available at: https://www.bjs.gov/content/pub/pdf/p17.pdf. Published 2019 April 25. Accessed August 30, 2019.

3. Palazzolo J. U.S. Prisons Grapple With Aging Population. The Wall Street Journal.

4. Carson EA, Sabol WJ. Aging of the state prison population, 1993-2013. U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics. Special report NCJ 248766. Available at: https://www.bjs.gov/content/pub/pdf/aspp9313.pdf. Published May, 2016. Accessed August 30, 2019.

5. Rold WJ. Thirty years after Estelle v. Gamble: A legal retrospective. Journal of Correctional Health Care. 2008;14(1):11-20.

6. National Institutes of Health. National institutes of health state-of-the-science conference statement on improving end-of-life care. NIH Consensus Development Program. Available at: https://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm. Published 2004. Accessed August 30, 2019.

7. Williams BA, Goodwin JS, Baillargeon J, Ahalt C, Walter LC. Addressing the aging crisis in US criminal justice health care. Journal of the American Geriatrics Society. 2012;60(6):1150-1156

Developing Geriatric and End-of-Life E-training For Inmate Peer Caregivers

Developing Geriatric and End-of-Life E-training For Inmate Peer Caregivers

Dr. Susan Loeb from Penn State University presented on the development of computer-based learning modules for caregivers of the aged and dying in prisons at the 11th Annual Conference on the Science of Dissemination and Implementation in Health in Washington DC, December 3-5, 2018. This research is being conducted with Dr. Valerie Myers at Klein Buendel (KB), a co-author on the presentation.

The increasing numbers and complex needs of aged and dying inmates intensifies the burden of care and costs incurred by prisons. In an initial study (NR011874), best practices in the community were adapted in the Toolkit for Enhancing End-of-Life Care (EOL) in Prisons to train prison staff in EOL care. The print-based Toolkit was well received; however, not well suited for dissemination and lacked geriatric content. The Toolkit was transformed and expanded into Enhancing Care of the Aged and Dying in Prisons (ECAD-P) computer-based learning (CBL) modules in a second study (AG049570). ECAD-P development revealed the need to develop e-training for inmates to assist staff as caregivers for aged and dying inmates.

The purpose of the third study, which was presented at the D&I Conference, is to transform best practices in inmate peer caregiving into a comprehensive training program  that consists of media-rich and interactive computer-based learning modules for providing geriatric and EOL care to peers (i.e., prisoner to prisoner). Focus groups with inmate caregivers, prison staff, and training staff were conducted to determine a menu of CBL modules. An Advisory Board of experts in EOL care, geriatrics, ethics, and corrections health informed the selection of modules for development. Usability testing will soon be conducted in one men’s and one women’s prison with inmates who are experienced in providing mental health peer support, but have not been caregivers for their aged and dying peers. Focus group data will be analyzed using thematic analysis. Usability data will be analyzed using descriptive statistics and content analysis. Data are currently being collected. Analysis will be complete in October and the presentation completed by November.

The Prisoner to Prisoner (P2P) project allows the creation of innovative technology while being mindful of security and safety concerns regarding prisoners. Expanded testing of the P2P product will optimize the scalable unit for broader dissemination, establish the effectiveness of the training, provide critical insights relevant to dissemination of the commercial product, and position the research team to study broad dissemination and implementation outcomes.

This research was funded by a Small Business Technology Transfer (STTR) grant to KB from the National Institute on Aging at the National Institutes of Health (AG057239; Dr. Susan Loeb, Principal Investigator) and Dr. Valerie Myers, Co-Investigator. Additional collaborators on the work presented at the conference include Dr. Erin Kitt-Lewis and Dr. Rachel Wion from the Penn State University College of Nursing, and Tiffany Jerrod and Morgan Carter from KB. The technology is being developed by the KB Creative Team.