Transcript Poster title

Perspectives of Older Asian Adult Caregivers:
A Needs Assessment and Implications for Post-Discharge Care Solutions
Susan L. Ivey, MD, MHSA, [email protected], Winston Tseng, PhD, [email protected], Carrie Graham, PhD, MGS, Arnab Mukherjea, MPH
Health Research for Action, School of Public Health, University of California, Berkeley, http://www.uchealthaction.org/
American Public Health Association Annual Meeting 2006, Asian Pacific Islander Caucus, Session 3365.0, November 6, 2006 - 4:30pm to 5:30pm
Funded by the Gordon and Betty Moore Foundation
What is transitional care?
Care that is provided to a patient as they transition
from one care site to another.
Why is transitional care important?
Older adults are especially vulnerable during care
transitions.
Seniors who do not have support during care
transitions are more likely to experience poor
outcomes, including hospital readmissions.
Study Goal & Objectives
 Assess the services available to patients and
G caregivers
O  Assess unmet needs of patients and caregivers
A
L
 Identify populations that are especially vulnerable and
assess their special needs
 Identify effective interventions from the literature and
potential interventions to increase access to services and
support for patients and caregivers
Presentation Objectives
Advance our understanding of the needs of older
Asian adults transitioning home after a hospital
stay, including the needs of patients (care recipients)
and their caregivers before, during, and after
hospital discharge.
This presentation is part of a larger study examining many diverse ethnic and
cultural groups including Latinos, African-Americans, Russian, mixed-race, and
lesbian/gay/bisexual/transgender (LGBT) communities in the San Francisco Bay
Area in California.
Definitions
Caregiver: Someone who provided at least two hours
of unpaid care per week for a family member or
friend.
Care recipient: Someone who had been discharged
from the hospital in the last twelve months.
Caregiving: Broadly defined; included personal care,
housework, transportation, financial assistance, and
emotional support
Original Data Collection for Strategic Assessment
Eight Focus Groups with Asian Caregivers
(20 total Focus Groups)
Focus groups were conducted in monolingual or mixedlanguage sessions including English, Cantonese, Tagalog,
Vietnamese, Bengali, Gujarati, Punjabi, and Hindi.
One In-Depth Case Study with Recently Hospitalized Asian
Senior and Caregiver
(Five total Case Studies)
Demographics of Asian Participants
67 Asian caregivers participated in eight Focus Groups (Chinese,
Pilipino, South Asian, Vietnamese)
5-11 participants per Focus Group
 28% Pilipino
 28% Vietnamese
 27% Chinese
 16% South Asian
One Korean senior (81-year-old man) and one caregiver (his
grandson’s wife) participated in the In-Depth Case Study
Results: Common themes found across
Asian ethnic-specific Focus Groups
 Expectation that family members (especially next generation)
should take care of elders and/or concern that this expectation
will not be met
 Americans were less supportive of older adults remaining
with their families
 Lack of in-language or culturally-competent services and
information
Quotes
“Chinese keep their traditional family values such as filial piety and
unconditional love in the family. It is okay that we don’t get paid when we
take care of our parents when they get old. It is our traditional values”
“The Indian community here is in a crisis. Actually the old Indian parents come here to
help children who need them only for baby-sitting. The Indian parents come here with a
view to get a better life and for baby-sitting. Their children do live with them. Most
people tell it. Once their assistance is over, they don’t get attention, or [the children] don’t
give due credit to their parents.”
Results: Unique themes found in
Chinese Focus Groups
Financial burden on caregiver/caregiving
Family is not allowed to / able to complain
Difficult to manage multiple care recipients
Community members want providers of the same ethnicity
Inequality of access based on immigrant status
Quotes from Chinese Focus Groups
“But talking of unfair, where I live, all of a sudden, all these people come from Russia
and they never worked in their lives and they get everything. They get everything
free…Here I worked here all my life and I pay for everything I get. But it is
government policy because the government calls them refugees.”
Results: Unique themes found in
Pilipino Focus Groups
Many stated that they had no problems
Government (e.g. Veterans Affairs) hospital systems were
very helpful (due to large number of Pilipino men fighting
along U.S. forces in World War II
Emphasis on splitting care giving expenses among all family
members and sacrificing professional obligations to provide
care for ill family members
Quotes from Pilipino Focus Groups
“... it is not easy to know the benefits of a veteran. You really need to
keep on asking what the benefits are… But since I was the one taking
care [of my father] on a one-to-one basis, I had the time to further
explore what really are the benefits of my father... Eventually [the
veteran's benefit] was given to him. And he was, you know, he was
able to exercise his rights and those privileges on long term [care].“
"And I made sure my sister, my brother and I shared in the expenses
because [my mother] only has Medi-Cal and Medicare. And SSI only gives
$800/month, I think. But I have a very expensive facility so I told my
brother and sister you should give 25%, 25%, I shared 50%. And then I
talked to the grandkids. Each of us have 3 kids. I talked to them [about]
giving $50.00 to help their parents if your parents cannot afford to give
25%. I want each of you to give $50 each. My reason for this is because I
want the children to know that it is their responsibility to help their
parents."
Results: Unique themes found in
South Asian Focus Groups
Some older adults relocate to United States to seek better
medical care after acute event/hospitalization in South Asia
Less social support and increased isolation in the United States
than in native countries
Preoccupation/concern that acculturation of younger
generations would lead to the lack of prioritization of caring for
parents in lieu of individual pursuits
Quotes from South Asian Focus Groups
“The bigger question is, I’ve been living out of India for 42 years and not having
your support system structure around you. In India, even if you live in a city,
you know people come, neighbors come and say hello, some social emotional
attachments. Here people are isolated and that becomes very [difficult] and at a
time of illness, the sense of isolation is factor that has come out.”
“There are first generation people here. Boys and girls,
they look after their parents very well. The second
generation, we can’t say.”
Results: Unique themes found in
Vietnamese Focus Groups
For providing comfort and ease for care recipient, preparing
the home functionally and aesthetically is a valued priority
Access to accurate and timely health information doesn’t seem
to be an issue
Communication in Vietnamese about health issues is an
important aspect of transition from hospital to home
Quotes from Vietnamese Focus Groups
“I was prepared. I got a room ready, clean and well
ventilated, for my wife to come home to feel more
relaxed, after her discharge from the hospital.”
“I just read newspapers. Commercial newspapers, this doctor, that doctor,
all kinds of doctors. Simultaneously, when we look at those... if our
illnesses are in there, then we will go to that doctor. Also, we can rely on
the family doctors for medicine and all of that.”
Results: Key issues in Korean Case Study
Informal caregivers (especially women) across multiple
generations through Korean kinship/extended family support
network facilitates support for subject’s transitional and home
care
Subject expects his children to take care of him in old age–
especially his sons– and grown dependent on sons’ families for
support
Continuity of care has made major difference in management
of caregiving
Same physicians for many years
Younger son coordinates care
Extended family support network has eliminated need for
outside services
Contradictory reports from caregiver and subject about his
health suggest subject’s reluctance to admit not feeling well or
dissatisfaction with family support
Examples from Korean Case Study
 Mr. Lee felt that he did not need any family members to stay with him in the
hospital because he didn’t feel sick and hospital staff provided good care.
 Caregiver disagrees with those sentiments, claiming that subject has been
hospitalized so often in the past years that family members don’t take episodes
seriously and that his feelings get hurt because his children don’t visit.
 Mr. Lee has been staying with his younger son’s family (his preference) and it
was uncertain if he would continue to stay there after recovering and
becoming independent.
 His family expected to continue providing care with need for outside services
 Mr. Lee’s younger son coordinates communication with providers and
transportation to clinics and hospitals
 Mr. Lee’s sons pick up medications and deliver them to his primary family
caregivers
 His daughter-in-law and granddaughter-in-law (caregivers) assist him with
cooking, cleaning, and laundry
 Mr. Lee has not granted any family member durable power-of-attorney
because he feels capable of making his own decisions
 Despite repeated hospitalizations, Mr. Lee feels his health conditions (kidney
dialysis, infections & heart disease) are improving and looks forward to the
independence of driving himself around soon.
Conclusion: Implications for Care Delivery
 Low-income, immigrant, and non-English speaking
seniors are at high risk
 Lack of language access is significant
 Providers were often lacking training in cultural
competency and humility
 Informal caregivers receive almost no or inadequate
information or training to help care recipients at home
 Quality of information, when available, was poor, often
unhelpful, and not clear
 Validated results of other caregiving studies*
 However, there still is a need for:
 Inclusion of more Asian subgroups
 More linguistic and cultural representation within each
Asian subgroup
 Unique considerations for qualitative research
depending on stated needs and preferences of different
Asian subgroups
 Increased review of sociological literature to
understand socio-cultural dynamics
Conclusion: Directions for Future Research
Transition to home is difficult to manage well, even
among families with extensive support networks
Expectation of family caregivers and obligation to
family care recipients were often substantially different
Lack of transportation services was significant
Unspoken dependency during transition results in
increased health risks
*Select
References
• Angel, JL & Angel RJ (2006). Minority Group Status and Healthful Aging: Social Structure Still
Matters. American Journal of Public Health, 96(7), 1152-1159.
• Brown-Williams, H., Neuhauser, L., Ivey, S., Graham, C., Poor, S., Tseng, W., & Syme, S. L. (2006).
From Hospital to Home: Improving Transitional Care for Older Adults. Berkeley: University of
California, Berkeley, Health Research for Action.
•Dilworth-Anderson, P, Williams IC, & Gibson BE (2002). Issues of Race, Ethnicity, and Culture in
Caregiving Research: A 20-Year Review (1980-2000). The Gerontologist, 42(2), 237-272.
• Giunta, N, Chow, J, Sharlach, AE, & Dal Santo, TS (2004). Racial and Ethnic Differences in Family
Caregiving in California. Journal of Human Behavior in the Social Environment, 9(4), 85-109.
• Li, H (2004). Barriers to and unmet needs for supportive services: Experiences of Asian-American
caregivers. Journal of Cross-Cultural Gerontology, 19, 241-260.
•Young, HM, McCormick, WM, & Vitaliano, PP (2002). Evolving Values in Community-Based LongTerm Care Services for Japanese Americans. Adv Nurs Sci, 25(2), 40-56.