Caregiving Needs of Family Caregivers of Latino Stroke

Survivors Long Beach Memorial / Miller Children’s &

Women’s Hospital Long Beach 7th Annual Nursing Research Conference

Stephanie Vaughn PhD RN CRRN California State University at Fullerton

5-7-15

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Objectives At the conclusion of this activity, the participant will be able to:

1. Discuss social and cultural implications of providing stroke care in the Latino community

2. Describe variation in health service and resource use among Latino stroke survivors and family caregivers

3. Evaluate interprofessional strategies to meet the family caregiving needs of the Latino stroke survivor

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Statistics • Latinos – fastest growing population in US;

approx. 16% of population (US Census Bureau,2010)

• Latino population increased by 43% 2000-2010; Mexican American population > by 54% (US Census Bureau, 2010)

• Latinos have different prevalence of risk factors; DM, obesity, hypertension, high cholesterol, & < access to healthcare (American Stroke Association, 2014)

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Statistics (cont.)

• Latinos 30% > likely to have stroke than non-Latino whites (CDC, 2012)

• Stroke event at younger age > stroke mortality among women

• more likely to experience second stroke (American Stroke Association, 2014)

• 27% Latino households provide informal caregiving to family/friend – typically a female

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Latino culture

• Latino family is close-knit and the single most important social unit. The term familism usually goes beyond the nuclear family. The Latino “family unit” includes not only parents and children, but also extended family.

• Father - head of the family and the mother is responsible for the home. Individuals within a family have a moral responsibility to aid other members of the family experiencing financial problems, unemployment, poor health conditions, or other life issues (Galanti, 2003)

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Latino culture (cont.) • Ethnic disparities in stroke contribute to

disparities in care burden of stroke survivors (Candido-Morais et al., 2012; Hinojosa et al., 2009)

• Latinas (esposa) perceived caregiving > of burden than adult children as they are designated primary caregivers r/t family role, followed by daughter (hija)(de Leon-Arabit, 2008)

• Predominantly Roman Catholic; religion/influence health beliefs

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Latino culture (cont.) • Information is passed mostly by word of

mouth. Grocery stores, schools, & churches are the main places people meet, visit, and exchange information.

• Lay health leaders (e.g. promotoras) often used to disseminate health information (Webel et al., 2010)

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Health beliefs

• External locus of control – believe that chance or external factors affect health

• Health beliefs are culturally embedded; religious influence; “health is gift from God” (Vaughn, 2009)

• Influence caregiver actions: compliance with medical care regime & utilization of outside services (Clark, 2010)

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Stressors/caregiver • Caregivers often experience fear & anxiety related to

care activities and < of education re: caregiving/resources (Lucke et al., 2013)

• Care of stroke survivor – added comprehensive activity to household management/child care/ managing personal needs; 73% participants developed CRS (de souza Oliveira et al., 2013)

• Emotional impact of care may interfere with care & contribute to > hospitalizations/< outcomes/ > mortality among caregivers (de souza Oliveira et al., 2013; Perrin et al., 2010)

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Problem/issue:

• Limited information re: experiences of Latino family caregivers of stroke survivors and perceived caregiving/resource needs

• Ethnic variations noted in stressors/mental health issues/experienced by caregivers

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Purpose

• To explore perceptions of caregiving needs and resources of family caregivers of Latino stroke survivors

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Method • Qualitative study/ ethnographic design • Data collection

Focus group/interview with open ended queries; interview data and field notes recorded during interview process

• Sample & setting/human subjects Convenient sample - 6 Latino caregivers; 3 males, 3 females (all

Mexican/ Mexican American) recruited via community stroke support/caregiver groups; English speaking; translator available

2 sons, one wife, one daughter, one sister, & one husband Conference room in Southern California acute rehabilitation

hospital – serves multi-ethnic, largely Latino community (CA–38%; local community–78%) – entrée granted via Hospital Admin

IRB – CSUF

•

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Analysis

• Descriptive statistics of demographic characteristics

• Thematic analysis of interview transcripts

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Results • Mean age of caregivers – 35 years; all in

workforce

• Mean age of survivors – 52 years

• Ethnicity - Mexican/Mexican-American

• Education – ranged from elementary education to college

• Stroke caregiving role “new” within last twelve months

• Income – low to middle income reported

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Results (cont.)

• All received “some” caregiver education & information while family member was inpatient (hospital/acute rehab); & “word of mouth” from family & friends

• Limited knowledge of community resources • Ave no. hours of daily caregiving – 10 (even w/ all

reporting as employed outside of home) • Primary caregivers – spouse

(esposa);daughter/sister; eldest son (sister – age 10)

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Demographics

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Caregivers Stroke survivors

Males 50 % Males 17 %

Females 50 % Females 83 %

Mean age 35 years Mean age 52 years

Employed 100 % Employed 100 %

Ethnicity Mexican Ethnicity Mexican

Income (family)

21-35K Income

Themes • “caring for family”

“it is a lot, I’m also caring for my younger siblings;… sleep 4 hrs. or so; getting used to it.”

“I provide care 24 hours/day...this is hard, but he is my husband…no one else can care for him like I do”

“God helps me get through this.”

• “hope for survivor recovery” “my mom is recovering fast, so she should be able to

care for self soon..” “I am hopeful, but scared, that XXX will never be the

same…I pray a lot.”

• “what’s next?” “looking for anything else (therapy) that is affordable &

close.”

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Discussion • All participants received some information re:

caregiving/resources; limited follow up – few caregivers sought outside resources; language/financial influences/transportation; inadequately prepared caregivers can lead to > stress & the development physical/mental health issues; family caregivers serve as “gatekeepers” re: survivor’s health (Hinojosa & Rittman, 2009)

• Informal care network for support/coping – extended family, friends, neighbors, & church (respite, appts.); Latinos found to employ > informal coping strategies (e.g. socializing, personal leisure, religion) (de Leon-Arabit, 2008); consistent with study findings

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Discussion (cont.) • All stroke survivors went home; SNF not option;

related to “familism” and sense of duty; “culturally embedded trait, “taking are of our own” even with increased care needs (Christ & Speaks, 2011)

• Faith apparent; religion serves as “buffer” against negative mental health outcomes

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Limitations

• Data saturation not achieved

• Participants were “new caregivers” – within last 12 months

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Implications • > cultural awareness among HCP which can promote >

collaboration & coordination of services/education for Latino caregivers (Candido- Morais et al., 2012; Hinojosa et al., 2009)

• Focus on “role engulfment” and how to create meaning out of the caregiving process” – foster pride of fulfilling filial/spousal responsibility (Pinquart & Sorenson,2005)

• Provide structured caregiver classes that highlight skills, education, & support; individual caregiver needs assessment (Perrin et al., 2010).

• Include mental health interventions that look “within culture” (Perrin et al., 2010)

• Integrating culture can enhance compliance in Latino population (Antshel, 2002)

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Implications • Follow-up through stroke support group in Latino

communities with Spanish speaking facilitators to provide additional information and support for both the survivor & spouse

• Identify informal support system (Hinojosa et al., 2012)

• Provide affordable community options for Latino stroke survivors/caregivers such as community college adaptive PT programs, local fitness centers, rehabilitation OP facilities, community centers, home care, “alternative access to healthcare,” etc.

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Conclusion • Study elucidates complex family caregiver

experience of caring for a Latino stroke survivor & finding/using resources; adds to the growing body of literature re: Latino stroke caregiving experience.

Questions/additional information:

svaughn@fullerton.edu

References • American Stroke Association (2014). Stroke among Hispanics. Retrieved from

http://www.strokeassociation.org/STROKEORG/AboutStroke/UnderstandingRisk/Stroke- Among-Hispanics_UCM_310393_Article.jsp

• Antshel, K. (2002). Integrating culture as a means of improving treatment adherence in the Latino population. Psychology, Health, & Medicine, 7, 435-449.

• Candido Morais, H., de Gouveia Soares, A., de Souza Oliveira, A., de Lima Carvalho, C., da Silva, M., & de Araujo, T. (2012). Burden and modifications in life from the perspective of caregivers f or patients after stroke. Rev. Latino-American Enfermagem, 20 (5), 944-953.

• CDC (2012) Prevalence of stroke—United States, 2006-2010. MMWR 2007; 61(20), 379-382 • Clark, A., Sander, A., Pappadis, M., Evans, G., Struchen, M., & Chiou-Tan, F. (2010). Caregiver

characteristics and their relationship to heathservice utilization in minority patients with first episode stroke. Neurorehabilitation, 27, 95-104. DOI:10.3233/NRE-2010-0584

• Crist, J.& Speaks, P. (2011). Keeping it in the family: When Mexican American older adults choose not to use home healthcare services. Home Healthcare Nurse, 29 (5), 282-290.

• DeSouza Oliveira, A., Rodrigues, R., Carvalho de Souza, V., De Souza Costa, A., De Oliveira Lopes, M. & De Araujo, T. (2013). Clinical indicators of caregiver role strain in caregivers of stroke patients. Contemporary Nurse, 44 (2), 215-224.

• Galanti, G. (2003). The Hispanic family and male-female relationships: An overview. Journal of Transcultural Nursing, 14 (3), 180-185. DOI: 10.1177/1043659603253548

• Hinojosa, M. & Rittman, M. (2009).Association between health education needs and stroke caregiver injury. Journal of Aging and Health, 21 (7), 1040-1058. DOI:10.1177/0898264309344321

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References (cont.) • Hinojosa, M., Rittman, M., & Hinojosa, R. (2009). Informal caregivers and racial/ethnic variation in

health service use of stroke survivors. Journal of Research & Development, 46 (2), 233-242. DOI:10.1682/JRRD.2007.10.0172

• Lucke, K., Martinez, H., Mendez, T., & Arevalo-Flechas, L. (2013). Resolving to go forward: The experience of Latino/Hispanic caregivers. Qualitative Health Research, 23 (2), 218-230. DOI: 10.1177/1049732312468062

• Perrin, P., Johnston, A., Vogel, B., Heesacker, M., Vega-Trujillo, M., Anderson, J., & Rittman, M. (2010). A culturally sensitive Transition Assistance Program for stroke caregivers: Examining caregiver mental health and stroke rehabilitation. Journal of Rehabilitation Research and Development, 47 (7), 605-616. DOI: 10.1682/JRRD.2009.10.0170

• Pinquart, M. & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. Gerontologist 45 (1), 90-106. doi:10.1093/geront/45.1.90

• US Census 2010. (2010). 2010 census data. Retrieved from http://2010.census.gov/2010 census/data/

• Vaughn, S. (2009). Factors influencing the participation of middle-aged and older Latin- American women in physical activity: a stroke-prevention behavior. Rehabilitation Nursing, 34 (1),17-23.

• Webel, A., Okonsky, J., Trompeta, J., & Holzemer, W. (2010).A systematic review of effectiveness of peer – based interventions on health-related behaviors in adults. American Journal of Public Health, 100 (2), 247-253. doi:10.2105/AJPH.2008.149419

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