unmet needs and barriers to service use by family caregivers

Unmet Needs and Barriers to Service Use by Family Caregivers

Julian Chow1, Andrew Scharlach1, Erica Auh1, and Nancy Giunta1

1 Center for the Advanced Study of Aging Services - University of California, Berkeley

Annual Meeting of the

National Gerontological Social Work Conference

New York, NY, February 27, 2005

Center for the Advanced Study of Aging Services

Mission: Improving services for the elderly through

research, collaboration and education

Current projects include: Strategic Plan for an Aging CA (SB910) Family Caregiver Support Program LTC Insurance and Quality Assurance LTC Integration and Case Management Consortium for Social Work Training in Aging

Overview

Literature Review

Research Questions

Method

Results

Discussion & Implication

Literature Review

More than half of the very old spouses provide care with no formal or paid assistance and many without informal assistance (Stone et al. 1986).

Only about 52% of dementia CGs use respite service (Cotrell, 1996).

As many as 30-50% of CGs participating in large national studies failed to use respite services despite free or low-cost services available to them (Lawton et al. 1989; Montgomery & Borgatta 1989).

Literature Review (cont’d) CG age, education, self-reported health and

informal support networks have been identified as predictors of unmet service needs (Clipp & George, 1990).

Conceptual Definition of Unmet Needs

Caregivers who believe or feel that a particular type of service would be helpful to meet their needs to better function as a family CG

Service users: inadequacy of service

Non-service users: absence of service

Research Questions

What are demographic characteristics of those with unmet needs?

How do the CGing experiences differ for the CGs with unmet need and without unmet need?

Which type of CG services mark the highest unmet needs?

What are the main barriers for service use?

Method

Random Digit Dialing

Respondent caring for someone over age 50

Surveys conducted in English and Spanish

Interview lasted approx. 30 minutes

N = 1,643

Operational Definition of “Unmet Needs”

Unmet needs study sample is extracted from the following questions:1) “Have you [CG] received …….[service type]….?2) “Do you think that [service type] would be helpful?”“No” to 1) & “Yes” to 2) for at least one service type

AND answered “No” to the question: Do you have all the help needed?(Non-service users who think a service would be helpful AND do not have all the help needed)

Demographics

Already have all the help needed

Do not have all the help needed

Female f=564 72% f=304 83%

Male 215 28% 64 17%

Gender** (n=1,147)

Age (n=1,117)

Under 35 197 26% 89 25%

35 - 49 186 25% 115 32%

50 - 64 202 27% 86 24%

65 + 170 23% 72 20%

* p<0.05; ** p<0.01

Demographics (cont’d)Marital Status (n=1,137)



Married f=471 61% f=210 58%

Living w/ partner 18 2% 8 2%

Separated 18 2% 7 2%

Divorced 99 13% 48 13%

Widowed 48 6% 16 4%

Never Married 119 15% 75 21%

Children < 18 Living in Household (n=1,143)

Yes 237 31% 126 34%

Demographics (cont’d)



ANHPI f=39 5% f=17 5%

Hispanic 189 25% 119 33%

African American 45 6% 29 8%

White 476 62% 183 50%

Else 21 3% 18 5%

Race/Ethnicity**(n=1,136)

U.S.A. f=661 85% 312 86%

Else where 117 15% 53 15%

Country of Origin (n=1,143)

Demographics (cont’d)Education (n=1,143)



< High school f=35 5% f=19 5%

Some high school 44 6% 20 6%

High school graduate 166 21% 63 17%

Post high school education 253 33% 126 34%

College graduate 191 25% 98 27%

Post graduate degree 88 11% 40 11%

2001 Household Income (n=963)

< $30,000 32% 53% 52% 35%

$30,000 + 68% 47% 48% 65%

Demographics (cont’d)

Employment (n=1,147)



Employed f=386 50% f=181 49%

Not employed 393 50% 187 51%

Financial Hardship

Financial Hardship** (n=1,124)



No hardship at all – 1 f=477 63% f=124 34%

2 115 15% 52 14%

3 99 13% 73 20%

4 25 3% 46 13%

A great deal of hardship – 5 44 6% 69 19%

Family RelationshipHas CGing created conflict in your family?** (n=1,120)



Very much f=68 9% f=82 23%

Somewhat 127 17% 85 24%

Just a little 133 18% 60 17%

Not at all 434 57% 131 39%Has CGing been a hardship for your family?** (n=1,120)

Very much f=78 10% f=108 30%

Somewhat 147 19% 108 30%

Just a little 159 21% 57 16%

Not at all 379 50% 84 24%

Family Relationship (cont’d)Has CGing brought your family closer together? (n=1,104)



Very much f=269 36% f=127 36%

Somewhat 215 29% 102 29%

Just a little 92 12% 36 10%

Not at all 176 23% 87 25%Are you setting an example for children in your family? (n=1,044)

Very much f=553 78% f=263 80%

Somewhat 92 13% 42 13%


Not at all 43 6% 18 5%

Family Relationship (cont’d)

Do you feel that you are contributing to your family?** (n=1,120)



Very much f=515 68% f=250 71%

Somewhat 164 22% 79 22%


Not at all 26 3% 5 1%

Strain

Physical strain from CGing** (n=1,136)



Not at all stressful – 1 f=390 51% f=83 23%

2 164 21% 72 20%

3 119 16% 85 23%

4 49 6% 53 15%

Very stressful – 5 48 6% 73 20%

Strain (cont’d)

Not at all stressful – 1 f=246 32% f=43 12%

2 166 22% 40 11%

3 154 20% 82 22%

4 110 14% 76 21%

Very stressful – 5 96 12% 127 35%

Emotional strain from CGing ** (n=1,140)

HealthSelf-reported CG health** (n=1,144)



Excellent f=147 19% f=41 11%

Very good 192 25% 78 21%

Good 269 35% 116 32%

Fair 134 17% 103 28%

Poor 35 5% 29 8%

Sleep Interruption** (n=1,145)

Yes f=157 20% f=153 42%

No 622 80% 213 58%

Support

Do you have other’s support/understanding of what you go through?** (n=1,134)



Yes f=624 81% f=259 72%

No 149 20% 102 28%

Logistic Regression

* p<0.05; ** p<0.01

Variable Odds Ratio

CG gender 1.6**

CG ethnicity 1.5**

Financial hardship in CGing 1.6**

CGing created conflict in family 1.1

CGing has been a hardship for my family 2.2**

Physical strain 1.7**

Emotional strain 1.6*

Self-report of CG health 1.2

Sleep interruption 1.6*

Have other’s support/understanding of what I go through 1.5*

(Don’t have all the help = 1)

Unmet Need & Service TypeDo not have all the help needed

Information** f=230 38 %

Access** 221 37 %

Education** 165 38 %

Counseling** 160 45 %

Counseling from clergy 92 33 %

Support group** 171 41 %

In-home respite** 123 45 %

Day respite** 147 42 %

Night respite** 101 46 %

Legal information** 255 41 %

Financial information** 234 39 %

* p<0.05; ** p<0.01

Barriers to Information*

* Identified by the study sample; Identification of multiple barriers allowed

High cost 21%

No desire from CR 18%

Not available 16%

Not available when needed 13%

Poor quality 13%

No one to stay with CR while CG gets help 12%

No time for help 12%

Transportation 12%

Service not offered by people like CGs 9%

Language 7%

Barriers to Access

High cost 23%


Not available 16%


Poor quality 13%



Transportation 11%


Language 7%

Barriers to Education


High cost 12%

Not available 15%


Poor quality

Transportation

12%

No one to stay with CR while CG gets help

No time for help

12%


Language 10%

Barriers to Counseling

High cost 29%


Not available 20%


Poor quality 18%



Transportation 14%


Language 10%

Barriers to Counseling from Clergy

High cost 21%



Not available 14%

Poor quality


No time for help

12%


Transportation 10%

Language 7%

Barriers to Support Group

High cost 23%


Not available 18%



Poor quality 15%


Transportation 12%


Language 8%

Barriers to In-home Respite

High cost 26%



Not available


19%


Poor quality 16%

Transportation 13%


Language 10%

Barriers to Day Respite

High cost 25%



Not available 17%



Poor quality 14%

Transportation 14%


Language 8%

Barriers to Night Respite

High cost 31%





Not available 20%

Poor quality 19%

Transportation 15%


Language 10%

Barriers to Legal Information

High cost 24%


Not available 17%



Poor quality 15%


Transportation

Service not offered by people like CGs

13%

Language 9%

Barriers to Financial Aid Information

High cost 24%


Not available

Not available when needed

17%

Poor quality 15%



Service not offered by people like CGs

14%

Transportation 12%

Language 10%

BarriersMost Identified Barriers:

Least Identified Barriers:

Cost

No desire from CR

Service not available

Service not available when needed


No time

Poor quality

Transportation

Services not offered by people like them

language

Discussion

Higher proportion of female and minority groups have unmet needs.

Non-service users with unmet needs are in worse shape (lower income, more strain, etc.).

Although CGs may have experienced different barriers for different service types, three most important ones are cost, CR desire and availability of the service.

Implication

Outreach to educate CR as well as CG (Educate that services help CR and ease the burden on CG)

Troubling: Lack of available services Assuming services exist, CG’s knowledge

about the availability of services is a barrier.

References

Clipp, E. & George, L. (1990). Caregiver needs and patterns of social support. Journals of Gerontology, 45 (3), 102-111.

Cotrell, V. (1996). Respite use by dementia caregivers: Preferences and reasons for initial use. Journal of Gerontological Social Work, 26 (3/4), 35-55.

Kosloski, K. & Montgomery, R. (1993). Perceptions of respite services as predictors of utilization. Research on Aging, 15 (4), 399-413.

Lawton, M., Brody, E. & Saperstein, A. (1989). A controlled study of respite service for caregivers of Alzhimer's patients. The Gerontologist, 29, 8-16.

Montgomery, R. & Borgatta, E. (1989). The effects of alternative support strategies on family caregiving. The Gerontologist, 29, 457-64.

Stone, R. & Others. (1986). Caregivers of the frail elderly: A national profile. Rockville, MD: National Center for Health Services Research and Health Care Technology Assessment.

Thank You!

Center for the Advanced Study of Aging Services

University of California, Berkeley

http://cssr.berkeley.edu/aging

unmet needs and barriers to service use by family caregivers

Documents

household n

service type

mographics contdemployment

household income n

particular type of service

demographics contdeducation

country of origin n

nonservice users