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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.  

Vacteens: A Web App to Boost HPV Vaccine Uptake

Vacteens: A Web App to Boost HPV Vaccine Uptake

Dr. W. Gill Woodall, Klein Buendel Senior Scientist, and his coauthors published the results of the Vacteens Project in the online journal, Frontiers in Digital Health.

The uptake of HPV vaccine in the United States remains lower than preferred by health authorities, particularly for young adolescents, when immunogenic response to the vaccine is strongest. Potential parental barriers to low vaccine uptake include confusion, uncertainty, and misinformation about HPV vaccine schedule, safety, and effectiveness. Dr. Woodall and his collaborators believe that parental barriers to HPV vaccination may be addressed by digital interventions, such as web apps, that are tailored to their concerns.

The Vacteens Project project tested a web app for educating parents. The study was conducted with 82 parent-adolescent (daughter) pairs recruited from in nine pediatric clinics in New Mexico. It tested whether digital information delivered to parents in a community setting may be an effective way to help reach HPV vaccine uptake goals in the United States. Diffusion of Innovations Theory principles were used to guide the development of the Vacteens/Vacunadolescente mobile app in English and Spanish.

Parents were randomized to receive either the Vacteens/VacunaAdolescente mobile web app or the usual and customary online HPV vaccination pamphlet from the U.S. Centers for Disease Control and Prevention (CDC). Parents completed surveys at baseline and month 3, and child vaccine records were collected at month 12. Vaccine uptake results from the study found that parents who received the Vacteens/VacunaAdolescente web app were more likely to have their daughters vaccinated than parents in the control condition. Study methods, results, and limitations are detailed in the online publication.

This research was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI) to the University of New Mexico (#1511-33018; Dr. W. Gill Woodall, Principal Investigator). Dr. Woodall’s collaborators include Dr. Greg Zimet from Indiana University, Dr. Alberta Kong, Dr. Lance Chilton, and Dr. Randall Starling from the University of New Mexico, and Dr. David Buller, Jeannyfer Reither, and Dr. Valerie Myers from Klein Buendel.

Collaborator Spotlight:
Dr. Aida Midgett and Dr. Diana Doumas

Collaborator Spotlight:
Dr. Aida Midgett and Dr. Diana Doumas

Dr. Aida Midgett and Dr. Diana Doumas, both from Boise State University, currently collaborate with KB Senior Scientist, Dr. Valerie Myers, on the STAC-T Project. STAC-T is a technology-delivered adaptation of a bullying intervention program for schools – STAC – that teaches students to act as “defenders” on behalf of targets of bullying. STAC stands for four bullying intervention strategies: “Stealing the Show,” “Turning it Over,” “Accompanying Others,” and “Coaching Compassion.”

Dr. Aida Midgett is a Professor and Chair of the Department of Counselor Education. She obtained her doctoral degree in Educational Psychology/Counseling Psychology and her masters degree in Community Counseling from Northern Arizona University. Her professional background includes behavioral health and school-based research, training counselor education students, and evaluating service-learning projects related to multicultural training. Dr. Midgett is a Licensed Professional Counselor. She has worked as a clinician in university, agency, and in-patient mental health hospital settings. Currently, her research focuses on evaluating the bystander bullying intervention program in K-12 settings.

Dr. Diana Doumas is a Distinguished Professor and Director for the Institute for the Study of Behavioral Health and Addiction. She is a Licensed Professional Counselor and Licensed Psychologist in Idaho. She is a member of the American Counseling Association, the Association of Counselor Education and Supervision, and Research Society on Alcoholism. Her experience includes both individual and couples counseling for clients with substance abuse, depression, anxiety, and interpersonal concerns. She specializes in empirically-based interventions and cognitive-behavioral therapy. Her research interests include substance abuse prevention and intervention, with a focus on harm reduction and online interventions for high-risk college and high school students.

The STAC-T project is funded by a small business (STTR) grant to Klein Buendel from the National Institute on Minority Health and Health Disparities at the National Institutes of Health (MD014943; Dr. Aida Midgett, Principal Investigator).

Expressing Empathy: Part 4

Expressing Empathy: Part 4

Choose Words with Care

It’s common for us not to know what to say when we hear that someone has cancer or another serious illness. Responses vary depending on the magnitude or seriousness of the news. How you respond may also depend on how close you are with the person giving the information. Timing is a factor, too. Being caught by surprise can sometimes leave us tongue-tied or not knowing what to say.

Here are some sensitive and compassionate statements to help you respond with care to someone’s cancer diagnosis or news.

  • I’m thinking of you.
  • You seem worried.
  • Is there anything I can do for you?
  • You’re not alone on this journey.
  • I see why you are concerned about this.
  • I care about you and your family.
  • Do you need a hug?
  • Tell me more about what is worrying you.
  • You’re in my thoughts every day.
  • I’ll pray for your recovery.
  • I’ll be here for you.
  • It sounds like you’re feeling _______________.
  • I’m not sure I’ve ever been in your position, but I can imagine it’s very difficult.
  • Thank you for sharing your update with me. It must be difficult news to report.
  • You have a friend in me during this experience and after.
  • This news is concerning to me. I’ll help however I can.

And remember…sometimes we don’t have to say anything at all, but rather just be there for them.

This research project was funded by a grant from the National Cancer Institute (CA144235; Dr. Wayne Beach, San Diego State University, Principal Investigator). Co-investigators included Dr. David Dozier from San Diego State University, and Mary Buller, Dr. Valerie Myers, and Dr. David Buller from Klein Buendel, Inc.

Managing Emotions: Part 3

Managing Emotions: Part 3

Emotional Disclosure

Sadness, joy, anger, surprise. Emotions are a natural part of human nature. Humans are wired with chemicals and connections which allow us to feel and react to life’s events.

Positive and negative emotions are an inevitable part of a cancer experience. Sometimes, it can be beneficial to share our emotions because it alleviates some of the stress of attempting to hide true feelings.

Even though it can be helpful, it can also be challenging for some people to disclose their emotions or feelings.

Practice Emotional Disclosure

  1. Reflect on 3 experiences in the past few weeks that have felt overwhelming or had a lasting effect on your overall mood.
  2. Choose a person with which to disclose these three experiences. Often it will likely be a spouse or person significantly involved in your current struggle.
  3. Tell your partner something similar to the following statement:
    • “I have something I have to get off my chest. For these things, please try to put yourself in my position. I hope this helps you gain an understanding of what my experience has been like. For this, I would like for you to just listen without problem-solving, reassuring me, or giving advice. This is just for me to get some emotions out which have been difficult for me to keep in.
  4. With as much detail as possible, describe your 3 experiences from the last few weeks with pauses to give your partner chances to respond or ask questions. Be sure to include both the story and the emotions involved in your experiences.
  5. If you are able, offer chances for your partner to share similar experiences.

This research project was funded by a grant from the National Cancer Institute (CA144235; Dr. Wayne Beach, San Diego State University, Principal Investigator). Co-investigators included Dr. David Dozier from San Diego State University, and Mary Buller, Dr. Valerie Myers, and Dr. David Buller from Klein Buendel, Inc.

Managing Emotions: Part 2

Managing Emotions: Part 2

Strategies for Positively Coping with Cancer

*Names have been changed to protect privacy.*

See a situation in a positive light. For this coping strategy, instead of focusing on the negative aspects of a situation, reframe it and consider positive outcomes. This is a common technique used by people who have a serious illness or have suffered a loss. Often individuals unconsciously do this by comparing their situation to others who seem to have it worse.

Kathrine Bellamy joined support groups and became very active in the pediatric brain cancer community when her son was diagnosed with a brain tumor. Part of the reason was to stay informed and connect with people who could understand how she was feeling. Another part was to track her son’s progress against those of other children. He responded well to surgery and treatment. Other children did not. Eventually, her participation in the cancer community took an emotional toll. Even though her son had two years of tests showing he was cancer-free, her personal involvement in other children’s lives amplified her fears about her son. She worried the cancer would return and that he might die. Her husband pointed out that her involvement in the groups, which had helped her at first deal emotionally with her son’s cancer, was now making her feel worse.

While comparisons may help a person cope with their cancer or their caregiving role, having another person make that same comparison is likely to backfire and be perceived as insensitive. Denver resident Diane Martin shared a story about a breakfast she had with friends. The conversation turned to recent losses the group had suffered. One woman was getting a divorce. Another woman’s teenage son had died in a car crash. Martin’s husband, Nate, had also recently died from multiple myeloma. One of the women told Martin that at least she could get a new husband but a child couldn’t be replaced. Deeply hurt, Martin abruptly left the lunch.

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Learn to Share Respect: Part 3

Learn to Share Respect: Part 3

Seeing Respect from Different Angles

Sometimes we’re quick to judge others’ behavior and label them as disrespectful. But if you look deeper and with empathy, you may find that something entirely different is actually going on. In this activity, you will examine a situation from two different angles – from the perspective of family members and the perspective of a cancer survivor.

Read the following scenario:

Your brother-in-law, Marcos, has been saying he’s very tired since his cancer treatment ended six months ago. He’s often too exhausted to attend family social gatherings. You haven’t seen him in three months. He missed his son’s school band concert and even his own birthday party. On the other hand, he regularly goes golfing and plays poker with his friends.

Answer the following questions:

  1. What do you think is going on with your brother-in-law?
  2. Do you think he is respecting or disrespecting his family?

On the surface, he’s not respecting his family. It’s inconsiderate to miss a child’s concert or a party your spouse spent time and effort to plan for you. Why would Marcos do this? Could there be something else going on?

Consider an alternative explanation:

There’s no excuse for inconsiderate behavior – but there may be an explanation. Perhaps Marcos is doing really well since his cancer treatment and he has been ready to move on from it — but his family is not. Perhaps he doesn’t want to be the center of attention anymore. Also, maybe he thinks it would be better for them to put this experience behind them.  They supported him through a tough time and he thinks they deserve a change. Maybe he has talked to them about it but they just won’t listen. In this scenario, he may be more comfortable playing golf and poker with his buddies because they listened. They respect his wishes. They don’t ask him questions about his cancer. They treat him like a regular guy. And it feels good.

Now answer the following questions:

  1. How do you feel about this explanation? Does it change your opinion about his disrespectful behavior?
  2. How do you think Marcos’ family was or wasn’t showing him respect?
  3. Can you empathize* with him? Can you respect his perspective? Could you respect his wishes going forward?
  4. What can you do in the future to understand the behavior of people in your life that seems disrespectful?

Take a second look! Seeing a situation from the other person’s perspective is a definition of empathy. Empathy can foster understanding. Understanding can promote acceptance and approval. Approval can lead to esteem. And esteem is a form of respect.

This research project was funded by a grant from the National Cancer Institute (CA144235; Dr. Wayne Beach, San Diego State University, Principal Investigator). Co-investigators included Dr. David Dozier from San Diego State University, and Mary Buller, Dr. Valerie Myers, and Dr. David Buller from Klein Buendel, Inc.