Previvor: Survivor of Increased Risk for a Disease (Video 2:53)

Have you survived living with a genetic predisposition for developing a particular disease such as cancer? If so, you are a previvor.  Previvors are often confronted with having to make decisions about their health that may include aggressive screening and surgery in order to manage the risks involved in getting a disease if they don’t. These decisions impact them and their families as the cycle of disease through generations creates worry and fear.

Genetic testing determines a person's risk for developing certain diseases. Testing can lead to the implementation of risk-reducing interventions such as more screening, surgical prevention, and chemoprevention. A harmful mutation can be inherited from a person’s mother or father. Each child of a parent who carries a mutation in one of these genes has a 50 percent chance of inheriting the mutation.

Maria’s father died from cancer in 1998. Her sister was diagnosed with colon cancer at the age of 27. It was important for Maria to find out if she carried a gene mutation related to Lynch syndrome, a type of inherited digestive tract cancer that her sister had. In this video, she describes her journey before and after being tested and how she became empowered to make her decision regarding surgery.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Long-Term Care Staff Hospice Attitudes (Research, Video 1:33)

As a hospice volunteer in nursing homes, I knew that the quality of life residents experienced depended largely on the context in which it was given. By context, I mean the staff, training, resources available, and everything else involved in the healthcare process. Concerning hospice patients, it is important that long-term care staff members understand and respect the difference between curative and non-curative care and operate appropriately in caregiving patients. Some staff members may have difficulty making that paradigm shift and interfere with the natural dying process. Staff members‘ beliefs about dying and palliative care can impact residents’ care.

Long-term care staff research on beliefs, values, and attitudes about death, dying, and palliative care was done to identify any differences among various job categories and places of work at five facilities. Participants included 1,170 volunteers, clinical managers, and all categories of residential long-term care workers. Healthcare workers generally had positive attitudes toward more than half of the selected aspects of interdisciplinary practice and end-of-life palliative care for residents. Unfortunately, these were the negatives:

1) Attitudes were more mixed about ten other aspects and a higher percentage of respondents indicated negative attitudes toward them.

2) There were significant differences between upper-level professionals and managers (registered nurses, physicians, rehabilitation staff, and clinical managers) vs. the hands-on caregivers (nursing assistants, patient assistants, and volunteers) with regard to some aspects of caregiving the dying.

These results indicate the necessity of knowing and addressing healthcare workers’ beliefs about death and dying in the context of quality residential care in long-term care facilities. Patient assistants, volunteers, and nursing assistants can especially benefit from more ongoing training and monitoring.

This video features interviews with hospice team members who explain how hospice should work in long-term care facilities.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Senior Centers: Original Social Networks (Video 2:25)

September is Senior Center Month, but many seniors celebrate their participation at senior centers throughout the year. If you haven’t been to a senior center recently or never, they are primary havens for supporting seniors in various aspects of their lives.

Recognized by the Older Americans Act (OAA) as community focal points, senior centers have become one of the most widely used services among America’s older population. Over 11,000 senior centers serve more than 1 million members every day. Seniors who participate in center programs can learn to manage and delay the onset of chronic disease and experience measurable improvements in their physical, social, spiritual, emotional, mental, and economic well-being. They thrive with a wide variety of programs.

Many consider senior centers to be the original social networks. They continue to keep up with growing demand by providing social interaction among people who create, share, or exchange information and ideas in a community setting. Centers build relationships among people who share interests, activities, backgrounds, or real-life connections. They don’t have to look far for non-virtual games, instant messaging, friends, chat rooms, circles, groups, followers, and no passwords to join.  Great lunches are often available, too!

Call or visit your local senior center. You may be surprised at the exciting activities you can join. If your local center has a website posted, you may be able to view contact information, the daily schedule, center news, and upcoming trips and events. These original social networks are still available for you! You can find more information about senior centers at the National Council on Aging website.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

End-of-Life Prison Care: Administrators and Hospice Volunteer Prisoners (Research, Video 4:19)

Thousands of men and women die in prisons every year. It is estimated that 20% of America’s prison population will be elderly by 2025. Many will eventually need quality end-of-life care. More prisons are establishing hospice programs for an aging prison population.

What do prison administrators say about these changing practices in caring for the terminally ill and their impact on the prison system? Research findings compiled through interviews with administrators from the central office of a state department of corrections reported them stating that the following influences impact prison end-of life care:

    1) Local prison culture

    2) Treatment vs. security focus

          3) Case by case consideration

          4) Public sentiment

          5) Budget concerns

          6) Conflicting views of service targets

This information provides a better understanding of how administrators can accommodate these changing practices in end-of-life care and infuse new practices in the future in the complex prison system caring for a stigmatized at-risk population.

Inmate hospice volunteers play an important role in many end-of-life prison programs. If a terminally ill patient is in prison, attentive caregiving can be especially beneficial when given by familiar faces of those who have also experienced the prison system. In this video, Kandyce Powel, executive director of the Maine Hospice Council, and members of the Maine State Prison hospice team share their perspectives on serving prisoners at the end of their lives:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog