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 The needs of teenagers with parents in hospice are often not met or
even assessed, the study found - even though the hospices take a
team approach to care delivery that’s designed to manage the
physical, psychosocial and spiritual concerns of dying patients and
their families.
Most of the surveyed adolescents with a parent in hospice had zero
or limited contact with staff, researchers reported in the Journal
of Hospice and Palliative Nursing.
“In hospice, the unit of care is to the patient and family, but kids
are being overlooked,” said study author M. Murray Mayo of Ursuline
College’s Breen School of Nursing in Pepper Pike, Ohio.
Mayo’s team interviewed 30 adolescents between the ages of 12 and
18, living in the midwest U.S., who had a parent receiving hospice
care. The team asked open-ended questions about how the youngsters
learned their parent was dying and how they navigated the stress
with ongoing responsibilities inside and outside of school. Twelve
teens reported they had no interaction at all with hospice staff.
Timing of providers’ visits was largely to blame.
“Hospice visits happen between 8:00 a.m. and 4:30 p.m., and kids
aren’t there,” Mayo said. “Efforts need to be made on the kids’ time
to say ‘we’re here for you, too.’”
Seven of the children reported “in-passing interaction” - brief
contact that lacked meaningful support.
For example, a 16-year-old boy whose mother was dying of cancer told
researchers: “Um yeah, we talked about a few things, they said a few
questions to me, I mean, I don’t know what they said, but we had a
few (words exchanged).”
A 12 year-old boy whose father was a hospice inpatient said: “I was
really curious, like everyone was. I asked the nurse how much time
he had, and I got really mad because the nurse only said, ‘Maybe if
he is lucky, three weeks.’” The teen did not know how close his
father was to death; he died six days later.
Six reported “engaged interaction” with positive, ongoing contact
with at least one hospice staff member.
Six had “formal interactions;" they were referred to professionals,
such as bereavement counselors or art therapists.
Adolescents “are willing to talk, and they have something to say,”
Mayo said, pointing out that teens’ willingness to participate in
this study is instructive to providers.
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Outreach before a parent’s death, experts say, can have long-term
benefits. “A little prevention could go a long way to decreasing
post-death suffering for these kids,” said co-author Denice Kopchak
Sheehan of Kent State University.
Several studies suggest that the death of a parent during
adolescence can result in psychological issues that stretch into
adulthood, including depression, self-injury and post-traumatic
stress.
“No healthcare or social service professional ever talked with me
when I was 15 and my father was dying of brain cancer,” said Barry
J. Jacobs, a psychologist and co-author of the newly-released AARP
Meditations for Caregivers. “I didn’t have any guidance for grieving
my father’s death, and this had long-term detrimental consequences
for my emotional development. Teens need the outreach efforts of
hospice programs.”
At JourneyCare, the largest hospice provider in Illinois, social
workers attempt to talk to all of a patient’s children- no matter
what age. Mary Ann Green, a JourneyCare project director and
licensed counselor, stresses that normalizing the experience of
illness and death is crucial for teens at an age when “fitting in”
is a priority.
“Being able to be truthful and say that we can’t fix it is very
empowering to a teen, because we can sit there in the pain with
them,” Green said. “It’s about listening, giving them the
opportunity to share what they are feeling and validating their
feelings. They want someone to understand that it’s painful, it’s
frightening, and it feels out of control.”
JourneyCare social workers find success connecting with teens
through “legacy making”: making a scrapbook together, encouraging
letter writing, or producing a video or a song.
When teens of the dying find meaningful support and ways to channel
their frustration, fear and sadness, Green says that they find
resiliency unmatched among their peers. “They are way beyond their
years in things they have to do and things they have to burden.”
SOURCE: http://bit.ly/2btAAsq Journal of Hospice and Palliative
Nursing, August 2016.
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