Browsing by Subject "Caregiving"
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Item Open Access Caring and thriving: An international qualitative study of caregivers of orphaned and vulnerable children and strategies to sustain positive mental health(Children and Youth Services Review, 2019-03-01) Proeschold-Bell, RJ; Molokwu, NJ; Keyes, CLM; Sohail, MM; Eagle, DE; Parnell, HE; Kinghorn, WA; Amanya, C; Vann, V; Madan, I; Biru, BM; Lewis, D; Dubie, ME; Whetten, K© 2018 Background: Child well-being is associated with caregiver mental health. Research has focused on the absence or presence of mental health problems, such as depression, in caregivers. However, positive mental health – defined as the presence of positive emotions, psychological functioning, and social functioning – likely prevents depression and in caregivers may benefit children more than the mere absence of mental health problems. Little attention has been given to how caregivers sustain positive mental health, particularly when doing challenging work in impoverished settings. Objective: The study's objective was to determine what successful caregivers of orphaned and vulnerable children (OVC) in diverse countries do to sustain their positive mental health. Methods: Using a mixed-methods, cross-sectional study design, trained local interviewers recruited a convenience sample of OVC caregivers through residential care institutions from five geographic regions (Kenya; Ethiopia; Cambodia; Hyderabad, India; and Nagaland, India). Participants completed surveys and in-depth interviews about strategies used to sustain their mental health over time or improve it during challenging times. Results: Sixty-nine OVC caregivers from 28 residential care institutions participated. Positive mental health survey scores were high. We organized the strategies named into six categories ordered from most to least frequently named: Religious Practices; Engaging in Caregiving; Social Support; Pleasurable Activities; Emotion Regulation; and Removing Oneself from Work. Prayer and reading religious texts arose as common strategies. Participants reported promoting positive emotions by focusing on their work's meaning and playing with children. The similar findings across diverse regions were striking. Some differences included more emphasis on emotion control in Ethiopia; listening to music/singing in Kenya and Hyderabad; and involving children in the tasks the participants enjoyed less (e.g., cleaning) in Cambodia. Conclusions: Under real-world conditions, small daily activities appeared to help sustain positive mental health. In addition, fostering structures that allow caregivers to engage regularly in rewarding caregiving tasks may be an affordable and scalable idea which could potentially benefit caregivers, children, and employers.Item Open Access Child Valuation in Contemporary China: Abandonment, Institutional Care, and Transnational Adoption(2020-04-17) Marlow, JessicaIn this thesis, I contend that orphaned and relinquished children’s positionality in Chinese society reveals a complex entanglement between changing domestic and international policies and popular Western perceptions of China. Initially inspired by my personal experiences evaluating the mental health of children in institutional care centers in Delhi, India, this thesis focuses on socio-political and economic factors which influence how children in institutional care are valued on the state and individual level. The orphaned child’s value within economic, moral, and political spheres is not objective or easily quantifiable; rather it is determined in relation to factors which extend far beyond the reach of the individual. Nevertheless, these value-decisions have tangible effects on children’s lived experiences. Key questions I will address in subsequent chapters are as follows: (1) To what extent do adult economic concerns and expectations influence the abandonment and/or adoption of children and their status in alternative care?; (2) What are the moral considerations of care in alternative care environments and how do these differ for domestic workers, international volunteers, and potential adoptees?; and (3) How do international perceptions of the China’s orphan care influence transnational adoption narratives and transnational adoption, and how do these perceptions intersect with the China’s political development of soft power overseas? This thesis foregrounds the complex, intercultural nature of institutional care in the contemporary period which are influenced by socio-historical and political changes in China and beyond.Item Open Access Compassion Fatigue in Adult Daughter Caregivers for Older Adults with Dementia(2013) Day, Jennifer RebeccaBackground: Family caregivers for a parent with dementia often experience negative emotional consequences. These caregivers may also be at risk for compassion fatigue, a concept that was introduced to the health care community as feelings of anger, inefficacy, apathy, and depression resulting from a caregiver's inability to cope with devastating stress. Compassion fatigue was first observed in nurses and later in other caring professionals such as social workers and psychologists and the definition was adapted to focus on prolonged exposure to suffering as one of the primary causes.
Although compassion fatigue has not been studied in family caregivers providing care at home, their experiences, particularly those of adult daughter caregivers for parents with dementia, appear to create a foundation for developing compassion fatigue. For this reason, it was important to investigate compassion fatigue in this growing population of caregivers and this dissertation explored compassion fatigue in daughter caregivers for parents with dementia. The dissertation aims were to 1) identify common themes across the literature on compassion fatigue and to apply these themes and the existing model of compassion fatigue to informal caregivers for family members with dementia, 2) analyze secondary data from Project ASSIST to substantiate a need for further study of compassion fatigue in adult daughter caregivers of a parent with dementia, 3) explore the feasibility of studying compassion fatigue in family caregivers, and 4) explore compassion fatigue and the contributing factors and potential outcomes of compassion fatigue in adult daughter caregivers for parents with dementia.
Methods: The dissertation consisted of three studies. The first study, a review of the literature addressed aim 1 of the dissertation as I applied the established model of compassion fatigue to family caregivers. The second study, a secondary analysis pilot study addressed aim 2 and aim 3 of the dissertation study. The third study of the dissertation was a qualitative study exploring the concept of compassion fatigue in daughter caregivers for parents with dementia.
Conclusions: The literature review found evidence to support the components of the established model of compassion fatigue and findings suggested additional work was needed on the concept of compassion fatigue in family caregivers. Findings from the secondary analysis provided support for more in-depth exploration of the concept of compassion fatigue in family caregivers. Findings from the larger qualitative study provided support for many of the factors related to compassion fatigue, but also suggested revisions to the established model of compassion fatigue were needed. A revised model was created based upon the findings from this dissertation.
The revised model incorporates the contributing factors and moderators of compassion fatigue found in family caregivers and the model also proposes revised characteristics and outcomes of compassion fatigue. Findings from this dissertation also suggest new areas for research, specifically with all dementia caregivers and caregivers who do not utilize formal or informal support. Additional value from this dissertation derives from the detailed explanation of previous relationship quality, empathy, and caregiving experience. This dissertation is one of a few qualitative studies on compassion fatigue to provide this level of detail and serves to anchor future research on compassion fatigue in all family caregivers.
Item Open Access “El sueño de todos”: A Qualitative Study of Family/Caregiver Experience after an Acute Neurological Event in Argentina(2017) Roberts, MichelleThe family of patients hospitalized in an intensive care unit (ICU) after a neurological event often immediately assume the role of caregiver to an individual with significant health care needs. Family/caregivers act as patient advocates and members of the care team, yet their experiences accompanying neurocritical care patients in Argentina and assuming the caregiving role are not well understood. The purpose of this study is to investigate the experiences of family members/caregivers during the time in which they assume the caregiving role as a means to better understand the relationship between patient, family/caregiver, provider, and health system in the ICU to potentially inform the development of appropriate interventions.
This study explores the use of Bronfenbrenner’s Ecological Systems Theory to ethnographically investigate the perceptions and attitudes of family/caregivers regarding their experience and relationships and interactions between patient, family, provider, and health system after an acute neurological event in Argentina. Study implementation occurred over the course of eleven weeks and included direct observation and semi-structured interviews. The initial two-week direct observation period was used to determine study feasibility and provide contextual understanding. Family/caregiver experience was investigated using 9 qualitative, semi-structured interviews with family/caregivers. Participants were selected using purposive sampling of family/caregivers of patients in a hospital ICU. Family/caregivers were unpaid family members, at least 18 years of age, and self-identified or elected by the family to speak on behalf of the family for the patient admitted to the ICU for an acute neurological event. Direct observation continued throughout the nine weeks of participant identification and interviewing after the initial two-week period to aid the investigator’s comprehensive understanding of patient and family/caregiver experience. Interviews were transcribed verbatim and translated line-by-line from Spanish to English. Iterative thematic analysis using a grounded theory approach was used to code and analyze interview transcripts. Thick description and comparison and categorization of themes were used to identify, explain, and verify patterns and develop broad themes.
Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el trato humano, and finding unity in purpose. Patients, family/caregivers, and medical providers often interact in the ICU. While patients rely upon both providers and family/caregivers for care, family/caregivers also rely upon providers to explain prognosis and next steps, including plans for rehabilitation. Medical providers have the power to affect patient and family/caregiver experience through more than just medical care – family/caregivers perceive and place importance on interactions with providers.
Family members/caregivers form an integral part of the care team. The centrality of the patient to both family/caregiver and provider unites these two groups and emphasizes the need for recognition of the role that family/caregivers play in patient experience as a mediator between provider and patient. Exploration of family/caregiver experience can help improve patient- and family-centered care and mitigate disability and other negative health outcomes through deeper understanding of the needs and concerns of family/caregivers as they support the patient across the care continuum.
Item Open Access Ethnoracial differences for caregiving burden in Parkinson's disease.(Parkinsonism & related disorders, 2023-11) Bayram, Ece; Liu, Hongliang; Luo, Sheng; Di Luca, Daniel G; Skipworth, Michael; Damron Solomon, Lisa; Dahodwala, Nabila; Litvan, IreneIntroduction
Caregivers play an important role in Parkinson's disease (PD) treatment, especially as the disease progresses. As the symptom profile and needs of people with PD (PwP) differ across ethnoracial groups, whether caregiving needs also differ for different ethnoracial groups should be investigated.Methods
Data were obtained from the Parkinson's Foundation funded Parkinson's Outcomes Project for PwP identifying as Hispanic (n = 495), non-Hispanic Asian (n = 170), non-Hispanic Black (n = 162), or non-Hispanic White (n = 7687). Cross-sectional and longitudinal total Multidimensional Caregiver Strain Index (MCSI) and domain-specific scores for caregiving burden were compared across the ethnoracial groups. Effect of demographics and clinical variables, interaction of these variables with ethnoracial groups for caregiver burden was assessed.Results
Care partners of PwP identifying as non-Hispanic Asian experienced the most burden. PwP identifying as non-Hispanic White were oldest, yet their care partners experienced the least burden. Care partners of PwP identifying as non-Hispanic Asian experienced more burden in physical and social domains, care partners of PwP identifying as Hispanic experienced more burden in financial and elder demanding/manipulative domains. Over time, burden increased similarly across the ethnoracial groups. Effect of frequency of falls, hospital admission, neuropsychiatric disorder and social support on burden over time differed across the groups.Conclusion
PwP from different ethnoracial groups can experience different levels of caregiving burden. Predictors for caregiving burden, such as social support and falls can have different impacts based on ethnicity and race. Caregiver needs should also be assessed and culturally competent support should be provided to benefit all affected by PD.