Kinship Care: What is it?

"Kinship care" is a popular term often used in reference to caregiving performed by a family member. I believe non-relatives who serve as committed caregivers during illness should also be included in the kinship care definition and treated as such. This story from my personal experience is one example of many that explains why.

Back in the 70's, the HIV-AIDS virus evolved into an epidemic/pandemic in LGBTQ communities. AIDS (Acquired Immune Deficiency Syndrome) is a disease with severe loss of cellular immunity and resistance to infections. I was a busy, Detroit, school principal who started helping Jake, a gay man I barely knew. He would come around my school sometimes at the end of the day to talk briefly with me while watching students leave. 

In his thirties, Jake confided that he suffered daily harassment from invisible people. His conversations were often bizarre and heartbreaking. One day, he mentioned his real-life boyfriend had left him. I phoned his family to get him more support. Unfortunately, they had given up on him and advised me to do the same. His mother deeply resented his homosexuality and gay lifestyle. 

Based on his appearance and actions, I suspected Jake had AIDS. I drove him and the "invisibles" to the hospital. He was admitted immediately and later placed with other AIDS patients in an isolated section of a nursing home. A young woman phoned me one day explaining that Jake was her biological father who had not raised her. She said she wanted to see him before he died and that she was busy taking care of her husband, her children, and being a waitress. 

The invisible people finally left Jake. Time passed during his death journey that included ongoing high fevers, chills, sores, weight loss, regular coughing, and breathing problems. This was my first major introduction to hospice care. I wasn't Jake's relative, a close friend of his family, or even a member of the LGBTQ community I supported. But I knew I was kinship.

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I wrote the following poem about Jake that was read at the 13th International AIDS Conference held in South Africa. Jake was there in spirit enjoying all the loving expressions he missed in life.

Remembering Jake

A lonely leper with AIDS,

you existed in a colony of inhumanity,

seldom felt life's caring caresses.

While demons dragged your body

through gutters of deterioration,

you relinquished your confused mind

to unseen terrorists who stalked,

robbed you of much needed rest.

I watched your painful decay,

witnessed abuses by family and friends

treating you like toxic waste.

Rare handfuls of love brought

limited smiles in your leper's life.

Sweet death delivered your only peace.

Frances Shani Parker

Frances Shani Parker is author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes available in paperback and e-book editions in America and other countries at online and off-line booksellers. Visit Hospice and Nursing Homes Blog and Frances Shani Parker's Website.

Family and Friends Rate End-of-Life Patient Care in Nursing Homes (Research, Hospice Video 1:00)

As much as people say they plan to die at home, most are dying in hospitals and nursing homes. What roles do family and friends who are patient advocates play? How do they feel about their experiences while their loved one is dying? Answers to these questions were topics for research at Brown University.

Telephone interviews were held with 54 close family members or friends of individuals who had spent at least 48 hours in the last month of life of a loved one in a nursing home. Respondents described the last year of life with the deceased loved one and their nursing home experiences.

These were the key themes of their areas of concern:

1)   Families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care.

2)    They noted staff members who did not fully inform them about what to expect in the dying process.

3)    Respondents reported burden and gratification in care they themselves provided which sometimes entailed collaboration with staff.

4)    Interviews also identified ways hospice care impacted families, including helping to relieve family burden.

These themes highlight the urgent need for a reduction in the family’s burden at this critical stage of caregiving a dying loved one. Also needed is improved communication so families can be better prepared at the end of the loved one's life. This includes more information about hospice care. The family’s trust in the nursing home depends on how these supports are enhanced to make their experience with a dying loved one beautiful for everyone.

This one-minute video titled “PSA #9 Nursing Home Hospice QT.mov” is funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership. The scenario presented introduces a family member to hospice care for their loved one.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (paperback, e-book)

“Hospice and Nursing Homes Blog”

Home Funerals: An Introduction (Video 4:17)

Many years ago, death rituals in America were a continuation of the family’s natural involvement with the deceased at home. Even today, some people view them as extensions of the hospice philosophy. After a death took place, the body of the deceased was prepared at home for viewing. Mourners came to pay their respects, console the family, and offer other forms of assistance. The family appreciated this outpouring of support from the community. After the funeral, the body was buried.

Involvement with death-ritual arrangements was and still is therapeutic. In addition to saving thousands of dollars, some families want to have more control over how the deceased loved one’s life is celebrated and cared for after death. Having a personalized home funeral is an option they embrace. Most states allow home funerals as long as legal documentation related to claiming the body and arrangements for burial or cremation are handled appropriately. Some families work with funeral homes on these matters.

This video titled “Home Funerals” is an introduction to this dignified death ritual, another alternative for family and friends to unfasten their earthly connections with loved ones who die. Comments are especially welcome from those who have participated in home funerals.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Friendship, Loneliness, and Senior Women Living Alone (Video: 1:04 min.)

Do senior women with family members who live nearby really need friends as much as senior women without family members living nearby? According to this research, they do. Reported in the “Journal of Gerontological Nursing,” a study by the University of Northern Iowa in Cedar Falls examined the role of friends in predicting loneliness among women over age 65 who lived alone. Researchers hypothesized that those women who didn’t have family members living nearby would be lonelier than those who did. Well, that didn’t happen. It turns out that “close friends were important for women living alone, regardless of whether they had family living locally.” This information is noteworthy because it emphasizes the need for making social connections a priority in the lives of older women who live alone, regardless of their local family connections.

This video titled "Knitting Together" showcases a group of older women who socialize through weekly knitting sessions. A woman shares near the end, “I’m here to enjoy the company.”

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Hospice Volunteer Training Ethical Issues

How should I respond when a patient’s family offers me gifts and gas money?

Is it okay to date my patient's unmarried caregiver?

Can I ask the family to only speak English when I’m around, so I won’t feel left out?

My patient wants me to help him commit suicide. He hates being alive in his condition. How do I handle this?

These are a few ethical questions that may concern hospice volunteers as they go about their duties of providing quality of life care for terminally ill patients. Perhaps you can think of many more. While training classes that certify hospice volunteers cover many topics, they don’t always cover the varied situations that can arise for someone playing the role of healthcare volunteer and friend.

The College of Nursing at Utah did a study that explores ethical issues hospice volunteers confront during their assignments with patients. These are the prominent themes resulting from interviews of hospice volunteers:

1) Dilemmas about gifts
2) Patient care and family concerns
3) Issues related to volunteer roles and boundaries
4) Issues surrounding suicide and hastening death

The study also concludes that hospice volunteer training should include more discussions after the initial training. This later training should include more ethical situations confronting volunteers and strategies for dealing with them.

You can read more here about this study of hospice volunteers and ethical issues.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”