Perspectives of Older Asian Adult Caregivers: A Needs Assessment and Implications for Post-Discharge Care Solutions

American Public Health Association Annual Meeting 2006, Asian Pacific Islander Caucus, Session 3365.0, November 6, 2006 - 4:30pm to 5:30pm

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 caregivers Assess unmet needs of patients and caregivers 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

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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.

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

Definitions

Eight Focus Groups with Asian Caregivers (20 total Focus Groups)Focus groups were conducted in monolingual or mixed-language 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)

Original Data Collection for Strategic Assessment

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 yearsYounger 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

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

Conclusion: Directions for Future Research

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

*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 Long-Term Care Services for Japanese Americans. Adv Nurs Sci, 25(2), 40-56.

Health Research for Action, School of Public Health, University of California, Berkeley, http://www.uchealthaction.org/

Susan L. Ivey, MD, MHSA, sivey@berkeley.edu, Winston Tseng, PhD, winston@berkeley.edu, Carrie Graham, PhD, MGS, Arnab Mukherjea, MPH

Funded by the Gordon and Betty Moore Foundation