The nature and outcomes of family caregiving are different for various sub-groups, depending on such factors as socioeconomic status; gender; age; cultural/ethnic traditions, values and beliefs; minority status; and degrees of acculturation and assimilation. In order to provide effective care to caregivers, psychologists need to be aware of and responsive to these nuances of culturally diverse groups.
It is critical to remember that all factors affecting a caregiver’s experience must be considered within the context of the individual’s cultural and interpersonal life experiences (Aranda & Knight, 1997; Ingersoll-Dayton, Morgan & Antonucci, 1997; Martire, Stephens & Atienza, 1997).
Factors such as socio-economic status, familial interdependence, level of acculturation, immigration status, and fear of stigma in response to a disease or physical disability (Aranda & Knight, 1997; Sotomayor & Randolph, 1988) may influence minority group members’ experiences of caregiving. They may also make them less likely to receive social and professional support services, potentially causing them to suffer levels of distress that are much greater than those documented in samples of non-minority caregivers.
While the past decade has seen strong growth in research about these cultural differences, many specific cultural, ethnic and sexual minority populations have been relatively under-studied in the caregiving arena thus far. In this section, we will discuss variations for practice with culturally diverse caregivers, including racial/ethnic minorities, caregivers in rural areas, and those providing care to LGBT (lesbian/gay/bisexual/transgendered) individuals, and persons with disabilities.
Stress and Coping
Ethnicity and culture contribute to variations in the levels of stress and coping capabilities of individual caregivers because of:
(a) differential risks posed by specific diseases and disorders
(b) differences in appraisal of stressors, and
(c) the differential effects of stress-mediating factors such as family and social support
The impact of caregiving will be quite different for an Latina woman in Los Angeles who works and provides care for her husband who has had a stroke depending on her family situation. If she has a large, local extended family who are helpful in taking turns caring for her husband when she is at work, her caregiving experience will be very different than if her family lived in Mexico and could not offer any support. If, in addition, the woman is reluctant to contact local agencies for assistance because she is embarrassed that she speaks little English, the stress of caregiving may be compounded.
Health Literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Ratzen & Parker, 2000).
Functional Health Literacy is defined as the wide range of skills and competencies that people develop to seek out, comprehend, evaluate, and use health information and concepts in order to make informed choices, reduce health risks, reduce inequities in health, and increase quality of life (Zarcadoolas C, Pleasant A, & Greer DS 2003; 2005).
Why is Health Literacy Important?
Effectively navigating complex health and social service systems require that caregivers manage large amounts of information and make complex decisions related to:
- Health information – Integrating information from multiple sources
- Health insurance – Navigating a complex bureaucracy with multiple regulations (e.g., Medicare Part D choices)
- Health promotion/disease prevention – Understanding the value of and being able to take action related to screening tests, lifestyle changes
- Chronic disease treatment – Understanding the disease process and adhering to often complex treatment regimens, initiating self-care, and utilizing technology to manage one’s disease.
- Acute care – Effective physician/provider/patient communication is required during times of great stress.
- Medical mistakes – Vigilance is called for to prevent errors related to medications, language barriers, miscommunication
Caregivers with low health literacy may be reluctant to inform healthcare personnel of their limitations in reading and understanding medical /drug information, nursing care sheets, or other information provided. Psychologists’ sensitive questioning and intervention can avoid medical problems for the care recipient which would greatly distress the caregiver. It can also improve accessing of relevant services for care recipient and caregiver (Berkman, et al., 2004).
Types of Health Literacy
- Prose tasks – include the ability to research information; comprehension of editorials, news stories, brochures, instructional materials; and expository abilities such as reading and delivering a narrative, or procedural, and persuasive information.
- Document tasks – refer to navigating through various types of forms such as insurance claims, transportation schedules, maps, tables, and drug/food labels
- Quantitative tasks – include simple numeracy skills like adding and subtracting, balancing a checkbook, calculating tips, charting vital signs, or calculating medication dosages.
The NAAL study, entitled “The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy,” (Kutner, et al., 2006) defined 4 literacy performance levels:
- Below basic level – An individual can perform the most simple and concrete literacy skills, such as locating easily identifiable information, following written instructions in simple documents, and solving concrete and familiar math problems.
- Basic level– An individual can perform simple, everyday literacy activities, such as reading/understanding information in simple documents; locating basic quantitative information, and using it to solve simple, one-step problems.
- Intermediate level – An individual can perform moderately challenging literacy activities, such as reading moderately complex texts, making simple inferences, locating information in complex documents, and locating quantitative information for solving problems.
- Proficient level – An individual can perform complex, challenging literacy activities, including reading lengthy, abstract prose, synthesizing and analyzing complex information, and solving multi-step problems.
Health Literacy Skills
- Solving problems—e.g., knowing how to manage a chronic health condition
- Using technology—e.g., understanding how to search the internet for resources, test blood sugars
- Having rhetorical skills—e.g., registering complaints, advocating for patient rights
What are the consequences of low health literacy for our society?
People with low health literacy:
- Make less use of screening/preventive services. Consequently many serious health conditions go undetected and untreated.
- Only go to the doctor for emergencies. Therefore, they often seek treatment only late in the development of a disease.
- Are more likely than others to be hospitalized when they do seek treatment due to the advanced stages of their diseases.
- Have poorer understanding of their health and treatment options.
- Adhere less to medical regimens.
- Have increased healthcare costs as a result of the factors mentioned above.
- Have a tendency to die earlier than others.
What are some characteristics of patients with low health literacy?
- The highest risk groups are those mentioned earlier -- members of minority groups, older adults, and those with limited education.
- The following signs should raise your concerns that a client may have low literacy:
- Clients who frequently miss their healthcare appointments
- Those who cannot name the medications they or the person they are caring for are taking, or tell you why, or when they take them
- Individuals who consistently make excuses for not reading information - e.g., “I forgot my glasses”
- Clients who always bring someone with them to read for them – i.e., “surrogate readers”
- Individuals who have trouble reading – but try to cover up, or downplay, their deficiencies
Tests for Health Literacy
- Brown bag test – Have the client bring all medications and explain how he uses them. It should be quickly evident if the patient can identify particular medications and if he understands their purpose and proper usage.
- REALM -Rapid Estimate of Adult Literacy in Medicine or REALM is often utilized because of its simplicity and ease of use. The client is instructed to read 66 words from medical terminology aloud and reading level by grade is calculated based on the number of correctly pronounced/read words. A significant limitation of the test is that respondents are only asked to say the words; they are not asked what the words mean.
- TOFHLA, S-TOFHLA, Adapted TOFHLA -Test Of Functional Health Literacy in Adults assess health literacy at a higher level than the REALM because it asks the client to make inferences and choices. All items use a “fill in the blanks” format. This test takes more time to administer than some and the score and may not be accurate if the patient has limited English proficiency.
- NVS - Newest Vital SignThe NVS or Newest Vital Sign is a much more practical test but requires an even higher level of reading ability, It includes simple, relatively non-threatening questions, such as “What things do you like to read?” and can give the provider a general picture of a patient’s abilities.
Structural and Cultural Barriers that Impact Health Literacy
- The bureaucracy of the health care system with the need to complete complicated forms and paperwork in English
- Language barriers, especially if the patient has limited English proficiency
- Misunderstanding about illiteracy – Many providers:
- believe that simply having written materials translated into different languages is sufficient to convey necessary information.
- fail to recognize that some immigrants might have been illiterate in their countries of origin and may not have been able to read or write in their native tongues (or maybe there was no written language).
- Lack of familiarity with Western medical concepts, especially if the individual was raised with a non-Western, traditional health belief system such as Ayurvedic medicine.
- Poorly translated materials also abound and confuse clients even more.
- Translators may be very helpful, but may not always translate everything accurately, omitting topics thought too distressing to the patient or caregiver.
- Some materials distributed by healthcare systems are culturally offensive or not culturally relevant.
- Professionals’ disregard for client heterogeneity is damaging. The client’s perceptions of a health issue or condition may differ from those practicing Western medicine. Some providers treat all older adults the same, as if a one-size fits all approach is sufficient to meet their needs. In addition, providers may not be knowledgeable about or sensitive to internal variation between different ethnic sub-groups or differences in belief systems tied to varying levels of acculturation.
What Can a Psychologist Do To Overcome these Barriers?
- Maintain an awareness that clients have different language and reading capabilities, as well as different social and cultural backgrounds
- Develop strategies to accommodate clients with low health literacy
- Be supportive and sensitive, not blaming
- Pay attention to environmental factors, such as signage
Currently, there is no universally accepted definition of health disparity. In their review of research and policy documents, Carter-Pokras and Baquet (2002) identified eleven different attempts to define health disparity. What the definitions have in common is the fundamental notion of differences in health status between defined population groups. Three widely recognized definitions are:
- The National Institute on Health defines health disparities as: “Differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States (NIH, 2000).”
- Healthy People 2010 states that health disparities are “differences that occur by gender, race or ethnicity, education or income, disability, living in rural localities or sexual orientation” (U.S. Department of Health and Human Services [DHHS], 2000).
- The Health Resources and Services Administration defines health disparity as “a population-specific difference in the presence of disease, health outcomes, or access to care (HRSA, 2000).”
Health Disparities and Caregiving
The research literature has clearly documented that health disparities exist within the general population. But the literature pertaining to health disparities among family caregivers is not as well developed. What does exist within the caregiving literature is evidence that caregiving is a chronically stressful process which can have potentially negative physical health outcomes (Pinquart & Sörenson, 2005; Schulz & Beach, 1999; Schulz, et al., 1995; Vitaliano et al., 2003).
It is widely accepted that serving as a caregiver to a loved one can be one of the most stress- inducing experiences that an individual encounters during his or her lifetime. Previous research suggests that the stresses of the caregiving role make caregivers vulnerable to a host of physical, psychological and psychosocial problems, including depression, social isolation, and poverty (Burton, 1992; Dressell & Barnhill, 1994; Fuller-Thomson, Minkler, & Driver, 1997; Haley, Levine, Brown, Berry, & Hughes, 1987; Jendrek, 1994; Joslin & Harrison, 1998; Minkler & Roe, 1993; Minkler, Roe, & Price, 1992; Pinquart & Sörenson, 2003, 2005; Schulz & Beach, 1999; Schulz, O’Brien, Bookwala, & Fleissner, 1995; Vitaliano, Zhang, & Scanlan, 2003).
There is also evidence that the problems experienced by caregivers differ in occurrence and intensity across racial and ethnic lines (Connell & Gibson, 1997; Dilworth-Anderson, Williams, & Gibson, 2002; Janevic & Connell, 2001; Pinquart & Sörenson, 2005).
While differences in physical and mental health status exist both between caregivers and non-caregivers, and also among caregivers from various ethnic and racial backgrounds, we know less about within-group differences of minority caregivers.
Values Related to Caregiving
Commonly Shared Cultural Values among Ethnic Minorities:
- Familism: Defined as strong feelings of loyalty, reciprocity and solidarity among members of the same family
- Families are often considered the primary source of social support
- Time is often viewed as fluid and flexible, with low value placed on adhering strictly to schedules or appointment times. This may lead to problems for clients who are receive services in highly structured clinical environments
Spirituality/Religion and Caregiving
Many ethnic minority families have strong religious and spiritual beliefs and practices. These beliefs may provide effective coping strategies (e.g., prayer, meditation, social connections) for family caregivers. But certain spiritual beliefs (e.g., “God will take care of all my needs”) may also constrain caregivers from using available services and resources that would be helpful to them and their care-recipients.
Some helpful findings concerning spirituality and religion in caregiving include:
- Participation in spiritual activities or religious behaviors has been found to be helpful in coping with stressful life events and may aid caregivers in dealing with the demands of caregiving.
- Chang, Noonan, and Tennstedt (1998) found that caregivers who reported using religious or spiritual beliefs to help them handle the caregiving experience had a better quality relationship with their care-recipients. The also suffered lower levels of depression and role submersion (i.e., the sense that caregiving had taken over their lives and become all-consuming).
- Caregivers caring for patients with a variety of disabilities and illnesses frequently report high levels of global religiousness and the use of religious coping strategies (Pearce, 2005).
- In a national survey, prayer was the most commonly reported means of coping among caregivers (National Alliance for Caregiving and AARP, 2004).
- Caregivers across all surveyed ethnic groups reportedly use prayer to help with caregiving stress. African American and Hispanic caregivers were significantly more likely to cope by praying than White or Asian caregivers.
- Religion and spirituality in caregivers may serve as a protective factor against negative psychological outcomes, particularly among African American and Hispanic caregivers.
- In a study of caregivers of patients with Alzheimer’s disease, Morano and King (2005) found that caregivers with higher levels of religiosity reported significantly lower levels of depression.
- Inter-ethnic comparisons showed that, African American caregivers reported the highest level of religiosity and the lowest levels of depression.
- Ratings of religiosity among Hispanic caregivers were slightly lower than those of African American caregivers, but were significantly higher than reported religiosity levels among White caregivers.
- Both the African American and Hispanic caregivers reported lower levels of depression than the White caregivers.
Service Utilization and Selection
Many individuals who are members of diverse cultural groups -- such as ethnic, racial and linguistic groups, persons with disabilities, individuals who are lesbian, gay, transgender or bisexual, and older adults -- under-utilize health and social services for caregivers, including mental and behavioral healthcare services.
This occurs for several reasons:
- Limited English proficiency may limit learning about caregiving resources and communication about caregiver and recipient status.
- Illness beliefs and treatment expectations which they feel are not shared or understood by health professionals will limit empathatic communication and optimal service delivery.
- Professionals may misperceive caregivers and interpret cultural mistrust as unreasonable resistance or even paranoia.
- Symptoms of mental health disorders may be perceived as a sign of weakness in older age cohorts and in some cultures.
- Mistrust of institutional systems can create significant fears about the quality of care in hospitals, residential treatment facilities, group homes, rehabilitation centers, and nursing homes.
- Home health and respite care may be viewed as work that family members should do, regardless of whether or not they are actually capable of handling the necessary tasks.
- Policies in clinics, hospitals, and residential settings which suggest failure to fully recognize the rights of persons from diverse groups such as LGBT individuals, domestic partners, and fictive kin may inhibit or restrict provision of needed caregiving and support for patients when most needed.
Psychologists with expertise in the care of culturally diverse clients can raise awareness and educate other health care providers and staff of community organizations about factors which may interfere with optimal delivery of mental and behavioral health services to diverse groups of caregivers.
Critical areas to address
- Stereotypes which may lead to errors in judgment about cultural groups. For example, because families of color are often stereotyped as being close-knit and supportive of their kin, social service agencies may not take the time to assess the actual needs of this population. This assumption may lead to less allocation of resources, manpower, and finances for outreach to those communities (Valle, 1981), which in turn, may help to perpetuate the misconception that they underutilize social services because they are taken care of by their own families (Henderson & Gutierrez-Mayka, 1992).
- The expression of mental health problems in terms of somatic complaints. For example, within some cultural communities, this may be a more acceptable expression of their concerns than would be complaints of feeling depressed or anxious. A focus on physical manifestations of mental health problems often leads clients to seek out physicians, rather than psychologists, for care. Their underlying mental or behavioral issues may not be addressed.
Creating Partnerships with Family Caregivers and Healthcare Professionals
Members of culturally diverse groups may not as readily appreciate the value of using either caregiver support services offered by professional organizations or care provided in residential settings.
Healthcare professionals need to understand the roles of so-called “informal” caregivers (those without professional training) within diverse communities:
- Informal caregiving arrangements and associated problems are not always simple to ascertain because family members may not wish to share details of family dynamics with professionals.
- Family caregiving roles can be tightly prescribed or loosely assigned by the ethnic minority culture. Either can be mismatched with the care-recipient’s needs, as well as with the efforts of the involved healthcare and social service professionals.
A Collaborative, Community-Based Approach (Valle, 1981; Aranda, 1990) is appropriate to meet the challenges of working with diverse caregivers.
- Education occurs through culturally pre-existing, culturally-oriented social networks, such churches, community link-persons or religious leaders, and family networks.
- Interventions that are culturally relevant and utilize bilingual/bicultural staff are likely to increase utilization of services by diverse groups of caregivers.
- Support groups, classes, and other interventions which do not carry stigmas of mental health problems but instead facilitate empowerment and encourage personal responsibility for change are most likely to be accepted and utilized.
- Psychologists need considerably more information about the experience of caregiving for individuals of differing cultural backgrounds in order to adequately address service needs, delivery and utilization.
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