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Caregiver Perceptions of Wandering Behavior in the Adrd (Alzheimer’s Disease and Related Dementias) Patient

Description: The dissertation examined family caregivers’ perceptions of wandering behavior after their loved one has been diagnosed with ADRD (Alzheimer’s disease and related dementias). Semi-structured in-depth face-to-face interviews of a convenience sample of 22 caregivers in the Dallas metropolitan area were conducted. Responses were analyzed using a grounded theory approach. The use of qualitative methods facilitated the study of how caregivers of a loved one with ADRD understood and explained in their own voice the wandering behavior associated with the disease and how their views of the behavior informed the caregiving process. In particular, this research examined why some caregivers tend to recognize wandering behavior as significant early on while the ADRD patient is still living in the home (and community) and modifications can be made to keep him or her there despite the behavior, and why some caregivers do not. Findings indicated that caregivers were concerned about the general safety of their loved one. Precautions were taken within the home for conditions related to frailty, but were much less likely to be taken to address wandering behavior and its negative consequences. Three groups of caregivers emerged: (a) those who primarily reacted to their loved one’s problem behaviors including wandering, and intervened minimally; (b) those who were proactive, making modifications in their routines and environment to protect their loved one after a trigger event; and (c) those who had a mixed response, who did the best that they could with what they had. This last group of caregivers took on additional roles, modified their homes for safety, but environmental stressors and inadequate supports limited their interventions. Implications of the findings for aging in place and community, further research, policy-making, and practitioners are discussed.
Date: August 2012
Creator: Dickson, Patricia
Partner: UNT Libraries

The Social Construction of Huntington's Disease Caregivers in Colombia, South America

Description: This study is a multi-method, two-city, intensive, in-depth qualitative study of Huntington's disease (HD) caregivers (HDCs) in Colombia. I explored the Colombia HDCs' experience through the Hispanic culture of caring. I develop the theory of the subrogate agency based on 5 functional stages of HD from Shoulson and Fanh (1979). This study was conducted in two different regions of Colombia, Medellin and Juan de Acosta, in which high rates of HD cases have been identified. The data were collected through three methods: (a) 56 interviews with HDCs and 8 with physicians; (b) 28 participant observations of Huntington's disease sufferers (HDSs); (c) 4 interviews and 8 focus groups of 6 members each with HDCs of late HDSs. Human agency is the ability to monitor one's own action. This study showed that the gradual and serious loss of all capabilities in HDSs has a social effect on the HDSs' agency. HDSs' survival depends on the subrogation that the HDC offers to the HDS. The HDS retains self-hood, i.e. agency, through the HDC's action. This subrogation causes a paradoxical consequence, resulting in both negative and positive effects on the caregiver. The theory of surrogate agency is supported by the data. Through the progressive phases, the capacity of the sufferer for expressing suffering, and social embarrassment, as well as the capacity to fight against the illness and provide reciprocity to their caregivers, deceases. The reason is that physical and cognitive impairments, as well as depression and anger, continue to increase. The study also documented important socio-cultural differences among the study regions. For instance, HDC's solidarity was based on blood and friendship; in larger cities, HD fragmented families. The study also found that HD is taking an immense toll on caregivers, sufferers and families because they are excluded from the Colombia's Basic Health Plan.
Date: December 2005
Creator: Giraldo, Clara
Partner: UNT Libraries

Attitudes about Caregiving: An Ethnicity by Generation Approach

Description: The goal of this project was to understand ethnic and generational differences in attitudes towards caregiving and expected burden while taking into consideration factors such as gender, generation, familism, and acculturation. One hundred and sixteen young adults (ages 18-25) and 93 middle-age adults (ages 38-62) were enrolled in the study. Participants included European Americans, African Americans, and Hispanics. Using moderation analysis, two hypotheses were investigated: 1) Ethnicity relates to attitudes towards caregiving, moderated by gender, generation, familism, and acculturation. 2) Ethnicity and expected burden relate to each other, moderated by gender, generation, familism, and acculturation. Familism emerged as a moderator in the relationship between ethnicity and expected burden. Results suggested that the strength of the relationship between being African American and expecting burden was less for those with moderate familism (R =.078), slightly higher for low familism (R = .176), and the highest for high familism (R= .261). Additional results indicated that the strength of the relationship between being Hispanic, as opposed to being European American, and expected burden, was higher for middle-aged adults (R =.23) when compared to young adults (R =.19). The current findings lend support to the recently established idea that familism is not protective against burden as it increases one's sense of obligation towards family (Knight & Sayegh, 2010).
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Date: August 2016
Creator: Caballero, Daniela M
Partner: UNT Libraries

Long Distance International Caregiving to Elderly Parents Left Behind: a Case of Nigerian Adult Children Immigrants in Usa

Description: The intent of this qualitative, grounded theory study was to understand why the Nigerian (Igbo) adult immigrants in the United States provide long distance international caregiving to their elderly parents left behind in Nigeria, the challenges they encounter, and their views on long-term service care. This study was grounded in semi-structured interviews of 20 Igbo adult immigrants residing in the Dallas/Fort Worth Metropolis. Analysis of the literature demonstrates a lack of existent topic on long distance international caregiving to elderly parents left behind in Nigeria. Findings show that reasons for Igbo adult children immigrants providing care to their elderly parents left behind stem from filial obligation, immigrant’s position in the family, perceived vulnerability of parents, and lack of government support. Also because of cultural expectations, the participants felt obligated to reciprocate to the care their elderly parents gave to them when they were growing up. While providing long distance international care, the participants encountered some challenges like adjusting to their new country, distance, financial constraints, being available for family procreation, issues with means of communication, and legal papers and parental adjustment to life in the U.S. This study also revealed that the participants would support the Nigerian government and private sector to provide long-term service care for the aging population. The findings led to some policy recommendations.
Date: December 2013
Creator: Okoro, Onyekachi
Partner: UNT Libraries

"The Long Goodbye": Uncertainty Management in Alzheimer's Caregivers

Description: Caregivers for individuals diagnosed with Alzheimer's disease (AD) shoulder a remarkably complex burden as compared to other caregivers of elderly individuals. For long distance caregivers, geographical separation further compounds the problems experienced by AD caregivers, as they are isolated from family members and support networks. Both on-site and long-distance AD caregivers experience uncertainty; the findings from this study illustrate how AD caregivers manage the uncertainty of the disease and primary care, as well as how uncertainty differs between on-site and long-distance caregivers. AD caregiver (N = 13) interviews were transcribed and qualitatively analyzed using uncertainty management theory as a thematic lens. The analysis revealed that AD caregivers experience overwhelming feelings of burden, guilt, and doubt; however, these feelings manifest differently depending on caregiver type. The findings of this study demonstrate that sources for obtaining information regarding AD and caregiving were useful for on-site caregivers; however, the sources did not account for the needs of long-distance caregivers or the psychosocial needs of on-site caregivers. Furthermore, AD caregivers did not seek support or information about AD and caregiving from health care professionals. Implications for future research regarding long-distance and on-site AD caregiving are discussed.
Date: May 2011
Creator: Shaunfield, Sara
Partner: UNT Libraries

Caregiving in Later Life: A Contextual Approach to the Provision of Care

Description: Guided by the life course perspective, this study examined the frequency of caregiving provided by older adults to kin and non-kin. A telephone survey produced a random sample of adults 60 years of age and older, which was predominantly White, with higher income and education levels (n = 278). Bivariate and multivariate analyses tested the impact of demographic characteristics and other variables, conceptualized as physical, human, and social capital, on the frequency of caregiving. Gender, age, health, limitations, education, income, household composition, social contact, and reciprocity were analyzed in multinomial logistic regressions. Caregiving was defined as care provided to sick or disabled persons, with frequency of providing care classified as often, sometimes, and never. The majority of older adults provided at least some care to others over a one-year period, with almost one-third doing so often and only one-quarter never doing so. Most provided care to more than one person, with over one-quarter providing care to multiple friends only. Age failed to predict caregiving involvement when physical and social capital variables were considered. The odds of often providing care are higher for women, although gender did not predict those who never provided care. Having at least some college only significantly predicted women who often provided care. Living with a disabled person increased the frequency of caregiving, although that care was not always for the disabled person. Similarly, living with a spouse, as compared to living alone, increased caregiving involvement but often the spouse was not the care recipient. These findings highlight a need for policy changes that will support and recognize the contributions of older caregivers of both family and friends. The definition of caregiving is another policy issue that should be addressed. These findings also challenge policymakers and community leaders to promote informal caregiving by providing educational programs to ...
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Date: August 2003
Creator: Worthen, Laura T.
Partner: UNT Libraries

Caregiving Style in Diverse Samples of Caregivers.

Description: With three homogenous caregiver groups (i.e., Alzheimer's caregivers, grandparents raising grandchildren, parents), caregiving styles were explored to determine their reliability and validity, their unique role in predicting caregiver outcomes, and their differences between groups of caregivers. A conceptual framework was adapted to determine the impact of contextual variables, caregiving styles, caregiver appraisal, and mediating variables on caregiving outcomes. A more concise version of the Caregiving Style Scale (CSS) was developed with 49 items yielding an internal consistency coefficient of .74. As expected, three caregiving styles emerged and were positively related to the parallel parenting styles. Across the caregiver samples, there were positive relationships among caregiving style dimensions within the same caregiving style, while those from opposing caregiving styles tended to have negative relationships indicating good convergent and discriminant validity. Authoritative caregiving style dimensions were generally associated with healthier functioning, while authoritarian and permissive caregiving style dimensions were correlated with less healthy functioning. Caregiving style dimensions were among the predictors of several outcome measures, highlighting the importance of their placement in the conceptual framework for caregiver stress and coping. Generally, an unexpected finding was that authoritative caregiving style dimensions tended to predict less adaptive caregiving outcomes, particularly for parents and grandparents, while the impact upon caregiver well-being by authoritarian caregiving style dimensions varied throughout the caregiver groups. Results further indicated that different groups of caregivers tend to take on different caregiving styles, with grandparents and parents tending to differ significantly from Alzheimer's caregivers in their approaches to caregiving.
Date: August 2006
Creator: King, Jennifer Kay
Partner: UNT Libraries

Role Importance, Affectional Solidarity, and Depression Among Familial Caregivers for Older Adults

Description: In the United States, familial caregivers provide approximately 80% of the long term elderly care and are at risk for mental health problems. As family members provide care, relationships shift from mutual support to increasing dependency on the caregivers, who in turn often experience a shift in self-concept from their prior relational role to include identification as caregiver for the care recipient. Affectional solidarity, or emotional relationship quality, can influence how caregivers experience their shifting role in relationship to a loved one. The study examined whether role importance is associated with caregiver depression over time, and tested the moderating role of affectional solidarity in this association. A subset of caregivers (N = 57) from the Longitudinal Study of Generations constituted the sample from which role importance, affectional solidarity, and Center for Epidemiological Studies Depression reports were analyzed using longitudinal hierarchical regression. Findings did not support hypotheses. Results suggested that affectional solidarity may be important to consider among familial caregivers as a potential protective factor for depression. Implications for future research and practitioners are discussed.
Date: August 2014
Creator: Benson, Karen M.
Partner: UNT Libraries

Primary Caregiving Father's Perceptions of Leisure

Description: The purpose of this study was to evaluate the impact the primary caregiving role had on men's perceptions of leisure. The Assessment of Leisure and Recreation Involvement (Ragheb, 2002) was used to examine men's leisure. Twenty-five stay-at-home dad groups were solicited via e-mail; 81 men submitted usable responses to an online survey. Respondents considered themselves the primary caregiver for children in the household and at least one child was younger than 12. Descriptive data were collected about the experience of being a primary caregiving father, demographics, and how the caregiving role affects the men's perceptions of leisure. Caregiving fathers in the sample resembled the perceptions of many primary caregiving mothers. Perhaps the "caregiving" role, rather than gender, is a more distinct variable explaining perceptions of leisure by parents.
Date: May 2004
Creator: Hall, Rebecca
Partner: UNT Libraries

A Path Analysis of Caregiving the Elderly: Voluntariness as a Variable of Role Assumption

Description: Structural equation modeling was utilized in studying the voluntariness of the assumption of caregiving status. A model hypothesizing the stress flow that occurs when assuming a new life schema was presented. Utilizing three groups of caregiving populations, Home Caregivers, Intermediate Care Facility Aides, and Intensive Care Units and Emergency Room Nurses (N = 66), measures were administered to determine the voluntariness of the assumption of the role of caregiver. Path analysis and causal interpretation were utilized to determine outcomes. The involuntary assumption of the role of caretaker was shown to significantly affect depression and burnout rates negatively when perceived feelings of burden were high. When caretaker age was greater upon assumption of the role, self-esteem was low and family support was perceived to be lacking. When the role of caretaker is assumed on a voluntary basis and support from outside sources is perceived as helpful (i.e., social or financial support from the family), job stress and the subjective manageability of the symptoms were viewed as manageable. Implications for those assuming the role of caretaker with the elderly were examined, and recommendations for further training and interventions within the caretaker population were offered.
Date: May 1996
Creator: Todd, John B. (John Bruce)
Partner: UNT Libraries

Utilization of the family medical leave act: A case study

Description: American businesses have confronted a changing world economy marked by increasing competition , technological innovation, and instability. Many more women have entered the labor force. Many families' caregiving needs are now being met by family members who also are holding down jobs. This, in turn, has fueled the rising need among employees for workplace policies that enable them to meet the often competing demands of job and home. In 1993, Congress passed the Family and Medical Leave Act (FMLA of the Act) to provide a national policy that supports families in their efforts to strike a workable balance between the competing demands of the workplace and the home. The objective of this study is to examine the amount of FMLA lost time at one particular company in order to determine a demographic and job characteristic profile of employees who take time away from their jobs for reasons that are protected by the Act.
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Date: May 2000
Creator: Mahdi, Taalib-Din N.
Partner: UNT Libraries

Ethnic Differences in Caregiving Style

Description: This study explored the caregiving styles of 306 grandparents raising grandchild across three ethnic groups (164 European Americans, 65 Latinos, and 77 African Americans). Significant differences were found in caregiving styles between European Americans and African Americans. Caregiver appraisal (burden, satisfaction, and Mastery) was found to be predictive of caregiving style across the entire sample, and differentially by ethnic group. Caregiver style was predictive of grandchild functioning across the entire sample, and differentially by ethnic group. Lastly, caregiver style was found to be predictive of grandparent well-being across the entire sample, and differentially by ethnic group. Implications are discussed in terms of the complex, multidimensional and culturally embedded nature of the caregiving experience and the importance of considering culture for optimal outcomes.
Date: December 2014
Creator: Rodriguez, R. Mishelle
Partner: UNT Libraries