Participant-Direction in a Culturally Diverse,Rural Population: The Hawaìi Community Living Program

Abstract

The Hawaii Community Living Program was a participant-direction pilot project aimed at rural, multicultural, and community-dwelling older adults at risk of institutionalization. This evaluation examined participant outcomes, and explored the role of culture, health literacy, and rural settings in participant-direction programs. The program enrolled 91 participants and, of these enrollees, helped 84 (92.3%) participants avoid institutionalization and spend down to Medicaid. Findings indicated that Program Coaches needed to be culturally appropriate and creative in arranging for services and the delivery of goods and supplies. Results suggested that participants need to be health literate to direct their care, but further research is needed.

Keywords

participant-direction consumer direction health literacy culture rural service delivery aging aging in place

Participant-direction programs empower older adults and families and provide them with flexibility in arranging needed long-term services and supports (LTSS). This approach leads to high satisfaction with services (Kassner, 2006; Low, Yap, & Brodaty, 2011; Wiener, Anderson, & Khatutsky, 2007) and significantly improves their lives (Wiener et al., 2007). With appropriate targeting of persons at risk of institutionalization and the support of a professional in developing plans (Gaugler, Boldischara, Vujovichb, & Yahnk, 2011), individuals can be successful in aging-in-place.

Low health literacy may complicate decision making on LTSS needs. It is defined as the extent to which individuals have the ability to obtain, process, and understand basic health information (U.S. Department of Health and Human Services, 2000), for instance, understanding LTSS needs. Research shows that older adults have lower health literacy in comparison with other age groups (Kutner, Greenberg, Jin, & Paulsen, 2006), and cultural differences have been correlated with lower levels of health literacy (Shaw, Huebner, Armin, Orzech, & Vivian, 2009).

Coordinating services for older adults can be challenging, given the cultural, racial, and ethnic diversity of this population. According to the 2010 U.S. Census, Hawai‘i is particularly diverse with 60% of the population either Asian, Native Hawaiian, or Pacific Islander (Nishita, Browne, Tom, Nihipali, & Trockman, 2013). Cultural diversity affects contextual definitions of disease and disability and preferences for care (Shaw et al., 2009). There are cultural differences in older adults and family long-term care preferences that when ignored, can lead to poor health outcomes (Braun & Browne, 1998; Golden, Tewary, Dang, & Roos, 2010). Additional complexity arises in the delivery of LTSS services in rural communities, where availability of services is limited (Buckwalter & Davis, 2011; Leipert et al., 2007).

The Hawai‘i Executive Office on Aging (EOA) implemented a 3-year pilot program in multicultural, rural communities called the Community Living Program (CLP), which targeted persons who were at risk of institutionalization because of physical or mental impairment or a recent stay in a facility and have limited income and assets. In Hawaii, increasing rates of enrollment (2.1%) in Medicaid’s aged, blind, and disabled program in fiscal year 2013 (Hawaii Department of Human Services, 2014) and high nursing facility occupancy rates (AARP, 2012) signal the need for pilot programs to support aging in place. This brief report examines (a) participant outcomes from Hawai‘i’s CLP program, (b) the role of culturally appropriate practices in implementing a participant-direction program in a rural island setting, and (c) health literacy levels in CLP participants.

Method

Description of Model

CLP participants were allotted a fixed budget each month and were able to hire employees to provide services, procure services from companies or agencies, or purchase goods and supplies. Coaches assisted participants in developing support and spending plans as well as training participants to hire and manage employees.

Sample

This demonstration program took place in three rural islands in the State of Hawai‘i—Maui, Kaua‘i, and Hawai‘i—from December 2011 through February 2013. The sample included 91 individuals meeting the following four inclusion criteria: (a) not currently living in a care facility, (b) not currently receiving Medicaid, (c) had income between 101% and 300% of the federal poverty level and an asset amount less than US$43,500, and (d) had one of the following: three or more activities of daily living (ADL) impairments, physician’s diagnosis of Alzheimer’s Disease or Related Dementia (ADRD), or a nursing facility or care home stay within the last 6 months. Aging and Disability Resource Center (ADRC) workers assisted in the recruitment and referral of 112 potential participants, of which 91 (81.3%) enrolled in the pilot. If the participant was unable to self-direct (e.g., due to Alzheimer’s or dementia), an authorized representative was appointed by the participant to make decisions regarding enrollment and complete program paperwork. In this sample, 71% of participants (n = 65) had an authorized representative. Individuals with an ADRD diagnosis were required to have an authorized representative. Participants could also elect to have an authorized representative for this project.

Procedure

ADRC workers screened telephone callers for CLP eligibility. The Program Manager assigned a Coach to participants (or authorized representative if unable to self-direct) and together created two documents: (a) a support plan outlining the supports needed, and (b) a spending plan detailing how monthly funds were to be allotted. Program Coaches had monthly contact with participants to support implementation of spending and support plans.

Data Collection

Evaluators collected quantitative data on participant characteristics and services from referral sheets, support plans, and spending plans. Qualitative and quantitative data were collected via structured telephone interviews with a random sample (n = 25, 27%) of the 91 CLP participants. All CLP Coaches (n = 5) participated in a focus group, which was audio recorded and transcribed. The study protocol was approved by the Institutional Review Board (IRB) of the University of Hawai‘i at Mānoa.

Measures

Measures for all participants included socio-demographic information, budget information, types of goods and services purchased, length of participation in the program, and reasons for disenrollment from the project. Telephone interviews included questions on project experience, health literacy, and awareness of community services prior to the start of the program. A question on health literacy asked participants about their ability to complete medical forms independently, a standard single-item measure of health literacy (Sentell, Baker, Onaka, & Braun, 2011). Focus group questions covered issues of culture and implementation in rural areas.

Data Analysis

Quantitative data were analyzed using descriptive statistics and t tests with significance at the p < .05 level. Qualitative data were analyzed using content analysis, identifying common responses, recurring words or synonyms, and interesting statements. Thematic categories were examined by a second researcher to verify themes and coding sequences.

Results

Project Benchmarks

The main participant benchmarks, set by Hawaii’s EOA, were to (a) enroll 90 participants, and of these participants, (b) 80 participants (89%) avoid institutionalization and (c) 80 participants (89%) avoid Medicaid spend down. The program met all benchmarks. The project enrolled 91 participants and 84 (92.3%) avoided institutionalization and spend down to Medicaid. In total, 68 participants remained active until the close of the pilot, and 23 participants were inactive at the end of the pilot. A small percentage of participants were institutionalized (n = 5, 5.4%) or spent down to Medicaid (n = 2, 2.2%). Two participants (2.2%) were non-compliant. However, the majority of the 23 participants who were not enrolled in the program by the close of the pilot passed away (n = 14, 15.4%) prior to the pilot end date.

Socio-Demographic Characteristics

Of the 91 participants, 58 (63.7%) were female, and participants ranged in age from 50 to 98 years (M = 78 years). Participants were diverse: Caucasian (n = 30, 33.0%), Native or Part-Hawaiian (n = 25, 27.5%), Filipino (n = 13, 14.3%), or Japanese (n = 13, 14.3%; see Table 1).

Table 1.

Participant Characteristics (N = 91).

	N	%
Gender
Male	33	36.3
Female	58	63.7
Marital status
Widowed	50	54.9
Married	27	29.7
Divorced	8	8.8
Never married	6	6.6
Ethnicities
Caucasian	30	33.0
Native/part Hawaiian	25	27.5
Filipino	13	14.3
Japanese	13	14.3
American Indian/Alaska Native	3	3.3
Chinese	3	3.3
Mixed (other than part Hawaiian)	2	2.2
Korean	1	1.1
Puerto Rican	1	1.1
Authorized representative
Had authorized representative	65	71.4
No authorized representative	26	28.6
ADLs
Participants with 3+ ADLs	84	92.3
Bathing	83	91.2
Walking	75	82.4
Transferring	70	76.9
Dressing	62	68.1
Toileting	56	61.5
Eating	20	22.0
ADRD
Participants with ADRD	34	37.4
Participants without ADRD	57	62.6
Other health concerns	57
Mobility disability	54	59.3
Chronic disease	33	36.3
Other	26	28.6
Blind/visual impairment	21	23.1
Hearing/speech/sensory impairment	20	22.0
Mental/behavioral illness	6	6.6
Spinal cord injury	4	4.4
Alcohol/drug/substance abuse	3	3.3
Traumatic brain injury	2	2.2

Note. ADL = activities of daily living; ADRD = Alzheimer’s disease or related dementia.

Participant Outcomes

With a mean monthly budget of US$750 (range = US$650-US$800, SD = US$60.92), participants remained in the CLP for 4 to 384 days (384 days was the length of the pilot; M = 265.7 days, SD = 104.5 days). There was no significant difference between those with (M = 255 days, SD = 104.1) and without (M = 260.9 days, SD = 107.5) an authorized representative in terms of total days spent in the program, t(89) = .243, ns. There was also no significant difference between those with ADRD (n = 34, M = 255.4 days, SD = 112.5) and without ADRD (n = 57, M = 257.5 days, SD = 100.5) in terms of total days spent in the program, t(89) = .1, ns.

Participant Knowledge of Long-Term Care and Health Literacy

In the telephone survey, two measures gauged participants’ knowledge of long-term care options prior to starting the CLP. First, “On a scale from 1 to 10, 1 being none and 10 being completely aware, before enrolling how aware did you feel you were about long-term care services available in your community?” Participants indicated a moderate level of knowledge of services available (M = 5.3, SD = 3.6). Second,

On a scale from 1 to 10, 1 being none and 10 being completely aware, before enrolling how aware did you feel you were about long term care services you (your loved one) needed to help you (your loved one) live at home?

Again, participants indicated a moderate level of knowledge of services available (M = 5.9, SD = 3.8). A single-item health literacy measure was included: “How confident are you filling out medical forms by yourself?” Responses ranged from (1) not at all confident to (5) very confident. Overall, participants (or their authorized representatives) rated themselves above average (M = 3.6, SD = 1.32), indicating they felt somewhat confident completing medical forms independently. A t test comparing responses from participants and authorized representatives was not significant.

This comment from a participant’s authorized representative illustrated the value of CLP in educating participants on community options:

Before starting with the program I didn’t know about everything [services in the community]. Before [my family was] in doubt about how long Mom could stay at home. This program helped me gain knowledge and how to cope.

Qualitative findings from the focus group with coaches indicate that health literacy, specifically the numeracy component of health literacy (U.S. Department of Health and Human Services [DHHS], n.d.) is a challenge for participants and a recurring theme among coaches. Putting together budgets and calculating hours for timesheets were most frequently discussed as complicated and frustrating to participants. These challenges did not lead to disenrollment of participants, but it did raise questions for the coaches on the appropriateness of participant-direction for persons with low numeracy levels and coaches expressed the need for better targeting for inclusion. One coach suggested that the project identify the needed skill-set for participation in the project, including print, oral, and numeracy skills.

Culture and Rural Service Delivery

Culturally appropriate strategies were key to the success of the pilot project. In the focus group, coaches described the challenge of being perceived as a “stranger” in very tight-knit rural communities and needing to develop trust. They had to be aware of local culture and expectations, including utilizing a “talk story” method, a friendly and informal conversational approach (Taosaka, 2002), when meeting with participants. This concept of “talk story” is important for building rapport and maintaining an open dialogue in the culture of Hawai‘i, and was essential for Coaches prior to discussing sensitive matters. If coaches walked in the home and immediately talked about the business of the project, the coach would not have been welcomed back. Without this initial “talk story” time, Coaches believed they would not have been as successful in developing trust. Coaches specifically indicated that “mainland approaches” would not have worked in these communities.

Participants were accustomed to informal, casual approaches of working and relating to others. They typically rely on an informal support network to get tasks done; for example, in exchange for help with cutting down a fruit tree, the other person could have the fruit. The formal structure and protocols were unfamiliar and uncomfortable for participants. Nevertheless, they complied with the requirements of the pilot project, but they preferred hiring employees they already knew or based on a trusted family member’s recommendation rather than another means (e.g., posting an ad). Participants considered their health conditions and needs to be very personal and preferred familiar individuals.

Rural neighbor islands also presented numerous challenges because access to technology and electricity were limited but were essential for submission of CLP paperwork. As shared by this Coach:

I’ll never forget when she called me and she said, “well honey, I’ll make sure the generator is up and running that day.” And . . . I mean it’s bad enough sitting on an upside down 5-gallon paint can in their carport doing [paperwork] and then to have to worry about a generator.

It was also difficult for Coaches and participants to arrange for the shipment of supplies because some companies do not ship to neighbor islands. Participants and Coaches had to negotiate and make special arrangements with supply companies.

Discussion

Findings identified key issues in the feasibility of implementing consumer direction programs in culturally diverse, rural areas. Participant-direction programs present considerable health literacy demands. CLP participants had to understand LTSS options and make health care-related decisions. Findings indicated that participants were somewhat confident to confident completing medical forms independently, a standard single-item measure of health literacy (Sentell et al., 2011), and reported a moderate level of awareness of long-term care options in the community. In addition, focus group findings indicated that coaches identified the need for basic numeracy skills to participate in the project. This may be interpreted as a need for participants to have at least an average level of health literacy to take part in participant-direction programs. Given the vulnerable nature of persons at risk of institutionalization, additional programs or supports need to be developed for persons with low health literacy. However, this is the first study on participant-direction that assessed health literacy, and additional research in this area is needed to explore the impact of health literacy in the success of participant-direction programs, given that participants are tasked with making a range of long-term care decisions.

In addition, Coaches used culturally appropriate practices to gain participants’ trust in rural areas, where residents are wary of outsiders. For example, Coaches utilized a “talk story” approach to build rapport and if they had approached participants purely as a case manager, Coaches believed that trust would not have been established. Findings suggest that cultural sensitivity is a necessity when implementing a community-based program in Hawai‘i. The preference to hire family and friends was seen as culturally based by Coaches; however, this finding is in line with other participant-direction programs. For example, the majority of participants in programs implemented in Arkansas, New Jersey, and Florida hired a family member or acquaintance to perform services (Schore, Foster, & Phillips, 2007), but this may be due to convenience, rather than a cultural preference to admit vulnerabilities and care needs to familiar individuals.

Coaches also had to be very creative, particularly in working in a rural island population and obtaining needed goods and supplies. This is similar to previous findings in rural Arkansas, which faced similar difficulties in obtaining supports outlined on participants’ support plans (Dale & Brown, 2007).

Study Limitations

The study had several limitations. First, select participants were interviewed via telephone; however, the random sample provided more in-depth data, and saturation was reached through these interviews as researchers began to note similar recurring themes. In addition, the study relied on a single-item question to measure health literacy. However, this study represents an initial step forward in understanding the health literacy demands on individuals in a participant-direction program.

Conclusion

CLP was a pilot participant-direction program in rural counties in Hawai‘i that successfully achieved its goal of helping community-dwelling participants to avoid institutionalization. At the same time, valuable lessons were learned on the need to be culturally responsive and creative in implementing the program in rural areas. The next phase for Hawai‘i is the broader integration of CLP within the ADRC system statewide. Further dissemination of CLP will further support empowerment and choice for individuals with a preference to age-in-place.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Christy Nishita, PhD is interim director and researcher at the University of Hawaii Center on Aging. She received her doctorate in gerontology from the University of Southern California. Her focus is on improving community-based long-term care, with publications on aging in place, nursing home transitions, and health promotion.

Meredith Trockman, MA, is a specialist and project coordinator at the University of Hawaii Center on Aging.

References

AARP. (2012). Across the states: Profiles of long-term services and supports. Washington, DC: Author.

Braun

K. L.

Browne

C. V.

(1998). Perceptions of dementia, caregiving, and help seeking among Asian and Pacific Islander Americans. Health & Social Work, 23, 262-274.

Buckwalter

K. C.

Davis

L. L.

(2011). Elder caregiving in rural communities. In Talley

R. C.

Chwalisz

Buckwalter

K. C.

(Eds.), Rural caregiving in the United States: Research, practice and policy (pp. 33-46). New York, NY: Springer Publishing Company.

Dale

S. B.

Brown

R. S.

(2007). How does cash and counseling affect costs? Health Services Research, 42(1, Pt. 2), 488-509. doi:10.1111/j.1475-6772.2006.00690.x

Gaugler

J. E.

Boldischara

Vujovichb

Yahnk

(2011). The Minnesota live well at home project: Screening and client satisfaction. Home Health Care Services Quarterly, 30, 63-83. doi:10.1080/01621424.2011.569666

Golden

A. G.

Tewary

Dang

Roos

B. A.

(2010). Care management’s challenges and opportunities to reduce the rapid rehospitalization of frail community-dwelling older adults. The Gerontologist, 5, 451-458. doi:10.1093/geront/gnq015

Hawaii Department of Human Services. (2014). Hawaii Quest Expanded Section 1115 Annual Report. Honolulu: Author.

Kassner

(2006). Consumer-directed home and community based services. AARP Public Policy Institute. Retrieved from http://assets.aarp.org/rgcenter/il/fs128_cons_dir.pdf

Kutner

Greenberg

Jin

Paulsen

(2006). The health literacy of America’s adults: Results from the 2004 National Assessment of Adult Literacy (NCES2006-483). Washington, DC: U.S. Department of Education, National Center for Education Statistics.

10.

Leipert

B. D.

Kloseck

McWilliams

Forbes

Kothari

Oushoorn

(2007). Fitting a round peg into a square hole: Exploring issues, challenges and strategies for solutions in rural home care settings. Online Journal of Rural Nursing and Health Care, 7(2), 5-20.

11.

Low

L. F.

Yap

Broadty

(2011). A systematic review of different models of home and community care services for older persons. BMC Health Services Research, 93. doi:10.1186/1472-6963-11-93

12.

Nishita

Browne

Tom

Nihipali

Trockman

(2013). Race and ethnic characteristics of older adults in Hawaii Factsheet. Honolulu: University of Hawai‘i, Center on Aging.

13.

Schore

Foster

Phillips

(2007). Consumer enrollment and experiences in the Cash and Counseling Program. Health Services Research, 42, 446-466.

14.

Sentell

Baker

K. K.

Onaka

Braun

(2011). Low health literacy and poor health status in Asian Americans and Pacific Islanders in Hawai‘i. Journal of Health Communication: International Perspectives, 16, 279-294. doi:10.1080/10810730.2011.604390

15.

Shaw

S. J.

Huebner

Armin

Orzech

Vivian

(2009). The role of culture in health literacy and chronic disease screening and management. Journal of Immigrant Minority Health, 11, 460-467.

16.

Taosaka

(2002). Let’s talk story: Non-threatening instructional strategy encourages student participation. Pacific Educator, 1(1), 8-10.

17.

U.S. Department of Health and Human Services. (2000). Healthy people 2010. Washington, DC: U.S. Government Printing Office.

18.

U.S. Department of Health and Human Services. (n.d.). What is health literacy? Author. Retrieved from http://www.health.gov/communication/literacy/quickguide/factsbasic.htm

19.

Wiener

J. M.

Anderson

W. L.

Khatusky

(2007). Are consumer-directed home care beneficiaries satisfied? Evidence from Washington State. The Gerontologist, 47, 763-774. doi:10.1093/geront/47.6.763