American Caregivers Research Articles

Experiences, Functioning and Needs of Low-Income African American Mothers of Children With Asthma

The purpose of this proposed study was to explore experiences, needs and functioning of low-income, African American caregivers of children with asthma in order to better understand symptom management. A qualitative, descriptive design was used. A purposive sampling technique was used to screen 32 caregivers of children with asthma, and 15 caregivers agreed to participate. Three main themes were identified: managing the symptoms; cultural beliefs and values; and culturally competent health care provider. For the caregivers culture disparity is not just about access to health services but instead the healthcare providers' understanding of the complexity of symptoms management.

The Meanings African American Caregivers Ascribe to Dementia-Related Changes: The Paradox of Hanging on to Loss.

Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients. Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session. Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings. The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping.

A Closer Look at Religiosity Among Family Caregivers

This article addresses the relationships between the dimensions of religiosity and positive appraisal of caregiving among African American, Hispanic, and non-Hispanic Caucasian family caregivers for older adults. Data analysis of 69 subjects revealed a negative correlation between non-organizational religiosity and positive appraisal of care among African American caregivers and a positive correlation between organizational religiosity and positive appraisal of care among Hispanic caregivers. Findings from this analysis challenges the overall assumption that religiosity increases positive appraisal of caregiving. Rather, the nature and outcomes of family caregiving are different for various ethnic groups.

The science of caregiver health.

The science of caregiver health.

Love Shouldn’t Hurt

The healthy messages parents convey to their adolescents about risk behaviors may be related to better adolescent outcomes. Few studies have examined the types of messages or strategies caregivers use to discuss dating violence with their early adolescents. We conducted semi-structured interviews with 20 African American maternal caregivers of early adolescent girls. Interviews were digitally recorded, transcribed, and coded using an emergent process. Themes in dating violence conversations focused on the meaning of love, identifying red flags in relationships, and what to do when involved in a problem dating situation. Caregivers used teachable moments (e.g., watching a TV show) to start conversations, weaved dating violence topics into conversations about other sensitive topics, or included their young daughter in conversations with older siblings. The results of this study highlight strategies that can be implemented in family-based prevention programming and also the importance of helping caregivers communicate their values and expectations.

Effect of Race on the Risk of Out-of-Home Placement Among Children with Caregivers Who Reported Domestic Violence

Increased attention has been given to domestic violence as a risk factor for out-of-home placement; however, few previous studies have examined the influence of race/ethnicity. This analysis used data from the National Survey of Child and Adolescent Well-Being to longitudinally compare time to out-of-home placement among a sample of 630 children with African American (n = 162), Hispanic (n = 95), and White (n = 373) female caregivers who reported domestic violence. Propensity score analysis was used to balance the group of caregivers based on observed characteristics. Findings indicated race was not a determinant factor of out-of-home placement; rather, other characteristics may better predict out-of-home placement among families affected by domestic violence. Recommendations for future research and practice are provided.

Resourcefulness in African American and Caucasian American Caregivers of Persons With Dementia: Associations With Perceived Burden, Depression, Anxiety, Positive Cognitions, and Psychological Well-Being.

Providing care to persons with dementia can have negative effects on caregivers' physical and psychological well-being. This secondary analysis explored relationships among perceived burden, depression, anxiety, resourcefulness, and psychological well-being in 28 African American (AA) and 45 Caucasian American (CA) caregivers of persons with dementia. Descriptive, cross-sectional design was used to examine the hypothesized relationships in a sample of 73 caregivers. CAs reported greater burden (t=-3.68, p<.001), more anxiety (t=-2.66, p<.01), depression (t=-2.21, p<.05), and hostility (t=-2.30, p<.05) than AAs. AAs reported higher scores than CAs on resourcefulness, positive cognitions, and psychological well-being. The study findings provided directions for the development of resourcefulness interventions to enhance the psychological well-being among dementia caregivers.

Calidad de vida de trabajadoras inmigrantes latinoamericanas como cuidadoras en España

ObjectiveTo describe perceived quality of life in Latin American caregivers working in Spain and how it varies in relation to certain variables shared by this group. MethodsWe used the SF-36 to measure perceived quality of life in 517 women residing in five Spanish regions: the Balearic Islands, Catalonia, the Basque Country, the Canary Islands, and Madrid. Several variables related to the socio-demographic profile and migration process were studied using Student's t test, ANOVA and linear regression models. ResultsThe participants scored very low on the dimensions of physical and emotional roles. The factors associated with lower quality of life scores within the group were working as a live-in caregiver, lack of contract, multitasking, irregular status, and younger age. ConclusionsThe vulnerability of these women can be explained by poor working conditions and other factors related to the migratory process.

Caregiver quality of life in pediatric asthma: associations with beliefs and concerns about medications and emergency department use.

To examine caregiver quality of life (QOL) related to pediatric asthma among families from Latino, African American, and non-Latino white (NLW) backgrounds. In all, 94 children with persistent asthma (6-15 years) and their primary caregivers completed interview-administered questionnaires. Overall QOL and subscale scores differed across race/ethnicity, with NLW caregivers reporting higher QOL. Caregivers who expressed more concerns about their child's medications and more beliefs in the necessity of asthma medications had lower QOL. In African American and Latino families, caregiver QOL mediated the association between beliefs about the necessity of asthma medications and child emergency department (ED) use. Caregiver beliefs and concerns related to child asthma medications may begin to explain differences in caregiver QOL across NLW, Latino, and African American caregivers. Caregiver QOL may be a mechanism by which caregiver beliefs and concerns about asthma medications are associated with child ED use.

Childhood obesity perceptions among African American caregivers in a rural Georgia community: a mixed methods approach.

Given the pivotal role of African American caregiver's perceptions of childhood obesity in rural areas, the inclusion of caregiver's perceptions could potentially reduce childhood obesity rates. The objective of the current study was to explore childhood obesity perceptions among African Americans in a rural Georgia community. This concurrent mixed methods study utilized two theoretical frameworks: Social Cognitive Theory and Social Ecological Model. Using a convenience sample, caregivers ages 22-65 years completed a paper-based survey (n = 135) and a face-to-face interview (n = 12) to explore perceptions of obesity risk factors, health complications, weight status, built environment features, and obesity prevention approaches. Descriptive statistics were generated and a six-step process was used for qualitative analysis. Participants commonly cited behavioral risk factors; yet, social aspects and appearance of the community were not considered contributing factors. Chronic diseases were reported as obesity health complications. Caregivers had a distorted view of their child's weight status. In addition, analysis revealed that caregivers assessed child's weight and height measurements by the child's appearance or a recent doctor visit. Environmental barriers reported by caregivers included safety concerns and insufficient physical activity venues and programs. Also, caregivers conveyed parents are an imperative component of preventing obesity. Although this study found caregivers were aware of obesity risk factors, health complications, built environment features, and prevention approaches their obesity perceptions were not incorporated into school or community prevention efforts. Findings suggest that children residing in rural areas are in need of tailored efforts that address caregiver perceptions of obesity.

Race-related differences in the experiences of family members of persons with mental illness participating in the NAMI Family to Family Education Program.

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families' caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.

“When We Do Sit Down Together”

Regular family meal times have been associated with enhanced family cohesion and positive developmental outcomes for children–youth, especially in White and/or middle-class families. Less is known about the meal time experiences of low-income African American families. Guided by a family resilience perspective, this study examines meal times among a sample of low-income African American caregivers of preschoolers in an inner-city neighborhood. We conducted in-depth qualitative interviews and a photo elicitation interview with 11 low-income African American caregivers about their family meal time experiences. We found that caregivers valued family meal times and acknowledged their benefits for family life. However, competing demands such as family schedules, household configurations, chores, time pressures, fast food restaurants, and low-wage work affected the schedule and structure of meal times. This study adds to discussions of family meal times among low-income African American families and provides suggestions for enhancing mealtimes through culturally and developmentally appropriate interventions.

Worry Among Mexican American Caregivers of Community-Dwelling Elders.

This mixed methods, multi-site, National Institute of Nursing Research (NINR)-funded, interdisciplinary, descriptive study aimed to identify expressions of worry in qualitative data obtained from caregiving Mexican American (MA) families assisting older adults. The purpose of this portion of the inquiry was to determine how worry is expressed, what happens to caregivers when they worry, and what adaptive strategies they used. We examined semi-structured interviews completed during six in-home visits with 116 caregivers. We identified 366 worry quotations from 639 primary documents in ATLAS.ti, entered them into matrices, and organized findings under thematic statements. Caregivers expressed cultural and contextual worries, worried about transitions and turning points in care, and identified adaptive strategies. Despite these strategies, worry persisted. Constant worry may be an allied, important aspect of caregiver burden. We need additional longitudinal research to better understand the experience of MA caregivers for older adults and to provide empirically supported interventions, programs, and services that reduce worry.

Family routines within the ecological niche: an analysis of the psychological well-being of U.S. caregivers of children with disabilities.

Using mixed methods, this study examined the relationship of caregivers of children with disabilities’ psychological well-being (PWB) and their orchestration of daily routines within their ecological niche. Thirty-nine U.S. caregivers completed in-depth interviews, PWB Scales, and Family Time and Routines Index (FTRI). We used a multi-step analysis. Interview data was coded and vignettes created without knowledge of PWB and FTRI ratings. Next, the relationship of quantitative measures was analyzed. Four groups were created using FTRI-extent and PWB means: (1) low routine-low PWB, (2) low routine-high PWB, (3) high routine-low PWB, and (4) high routine-high PWB. We examined qualitative differences in key features between groups. Findings: Total PWB and FTRI scores were not significantly correlated, PWB Purpose in Life and FTRI-extent scores were moderately positively correlated, and PWB Environmental Mastery and FTRI-extent correlation approached significance. Qualitative findings describe caregivers’ structuring of routines, intensity of oversight, support in routines, management of dinner, paid work, and needs for respite. The four groups differed in paid work, household support, degree the child could self-occupy, Environmental Mastery, and opportunities to recuperate. Caregivers with higher levels of well-being and more regular routines did paid work, had supportive spouses, had children who more often could follow routines, had higher Environmental Mastery, could orchestrate a family meal, and had breaks from care in either work or leisure. All Native American caregivers and Mexican American caregivers with spouses were in the high routine-high PWB group. Insight into this complex negotiation between family members within daily routines may provide practitioners a better understanding of how to work within family circles to foster therapeutic alliances, identify focused intervention targets, and promote positive family wide outcomes.

Existential Well-Being, Drug Abuse, and Parenting Stress in African American Women

The current study examined the influence of existential well-being and drug abuse on parenting stress in a sample of low-income African American women (n = 152). Whereas existential well-being served as a protective factor against all three forms of parenting stress measured (parental distress, difficult child, and parent–child dysfunctional interaction), drug abuse was a risk factor for all three. Existential well-being was also inversely related to drug abuse. A path analysis was conducted to further elucidate the cross-sectional associations among these variables. A positive, indirect effect of existential well-being on two of the three components of parenting stress, parental distress and perceived child behavior problems, but not the third, parent–child relationship quality, through level of drug abuse was found in support of partial meditation. Clinical implications regarding enhancing and using existential well-being as a culturally-relevant coping mechanism for African American caregivers are considered, and the etiological mechanisms of parenting stress are discussed.

“You Just Have to Build a Bridge and Get Over It”: Low-Income African American Caregivers’ Coping Strategies to Manage Inadequate Food Supplies

This article examines the experiences of food shortages among a sample of low-income, African American caregivers of preschoolers and how they coped with the risk of inadequate food supplies. Data derived from qualitative interviews identified multiple food-based, social network-based, and institution-based strategies that caregivers used to alleviate or prevent food shortages. The configuration of strategies varied among households and reflected different approaches for coping with inadequate food supplies. Highlighting the resilience of low-income families, these findings expand on current research that misses the complex and diverse ways households coped with food shortages. The research also suggests strength-based interventions grounded in the firsthand experiences of households.

Bereavement life review improves spiritual well-being and ameliorates depression among American caregivers

The aim of our study was to investigate the utility of bereavement life review (BLR) to elevate spiritual well-being and alleviate depression among Hawaiian-American caregivers, and to identify changes that occur when caring for their loved ones up to the time of death. Bereavement life review therapy was provided for 20 bereaved Hawaiian Americans. In the first session, subjects reviewed memories of the deceased with a therapist, who recorded their narratives and collected them into a personal history book. During the second session, subjects discussed the contents of this book. Caregivers completed the Functional Assessment Chronic Illness Therapy-Spiritual (FACIT-Sp) questionnaire and the Beck Depression Inventory, Second Edition (BDI-II) pre- and post-intervention. Subjects also described changes in their views that occurred during the caring process in response to questions. FACIT-Sp scores significantly increased from 34.1 ± 9.63 to 36.3 ± 10.6 (t = -2.6, p < 0.05, and BDI scores significantly decreased from 11.7 ± 7.7 to 8.8 ± 7.0 (t = 2.27, p < 0.05). Five categories were chosen from the narratives on changes that had occurred during caregiving and due to the deceased death: "Learning from practical caring experience," "Positive understanding of patients," "Recognition of appreciation," "Self-change or growth," and "Obtaining a philosophy." These findings show the applicability of bereavement life review therapy for Hawaiian families, including efficacy for spiritual well-being and depression. The comments of the caregivers also indicate the potential of the therapy for identifying the positive aspects of caring for terminally ill patients.

Role of Financial and Social Hardships in Asthma Racial Disparities

Health care reform offers a new opportunity to address child health disparities. This study sought to characterize racial differences in pediatric asthma readmissions with a focus on the potential explanatory role of hardships that might be addressed in future patient care models. We enrolled 774 children, aged 1 to 16 years, admitted for asthma or bronchodilator-responsive wheezing in a population-based prospective observational cohort. The outcome was time to readmission. Child race, socioeconomic status (measured by lower income and caregiver educational attainment), and hardship (caregivers looking for work, having no one to borrow money from, not owning a car or home, and being single/never married) were recorded. Analyses used Cox proportional hazards. The cohort was 57% African American, 33% white, and 10% multiracial/other; 19% were readmitted within 12 months. After adjustment for asthma severity classification, African Americans were twice as likely to be readmitted as whites (hazard ratio: 1.98; 95% confidence interval: 1.42 to 2.77). Compared with whites, African American caregivers were significantly more likely to report lower income and educational attainment, difficulty finding work, having no one to borrow money from, not owning a car or home, and being single/never married (all P ≤ .01). Hardships explained 41% of the observed racial disparity in readmission; jointly, socioeconomic status and hardship explained 49%. African American children were twice as likely to be readmitted as white children; hardships explained >40% of this disparity. Additional factors (eg, pollution, tobacco exposure, housing quality) may explain residual disparities. Targeted interventions could help achieve greater child health equity.

The Health of Grandparents Raising Grandchildren: A Literature Review

Around the world, an increasing number of grandparents are raising grandchildren in households without a biological parent. This is no less true in the United States, where grandparents raising grandchildren are at increased risk for depression and declining physical health. The purpose of this article is to explore the recent literature as it relates to the psychological and/or physical health of grandparents raising grandchildren. On reviewing 19 articles from the past 10 years, it is clear that the literature consistently verifies the health risks, especially depression, for grandparents raising grandchildren; however, the lack of research regarding grandfathers and non-African American caregivers is apparent. The factors influencing grandparents raising grandchildren are numerous, which calls for care providers to assess the needs, situations, and perceptions of grandparents individually. Finally, a need has arisen for more research suggesting and validating interventions that health care providers can use to support this population of older adults.

Caregiving as Ministry: Perceptions of African Americans Providing Care for Elders

This article provides qualitative findings from a community-based, mixed-method study of African American caregivers of elders. Using constant comparative analysis of 21 in-depth interviews, investigators explored the reciprocal, interactive influence between caregiving and religion or spirituality. Findings suggested that participants perceived their approach to care as a personal ministry. Analysis of the core category of Caregiving as Ministry identified four characteristics of the participant's care approach: (a) caregiving is an honor and a blessing, (b) caregiving is my identity, (c) caregiving is sustained by a personal relationship with God, and (d) caregiving is a higher calling from God. The article concludes with three implications for direct and community-based social work practice.