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Academic literature on the topic 'Caregivers'

Author: Grafiati

Published: 4 June 2021

Last updated: 24 September 2024

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Journal articles on the topic "Caregivers"

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Savla, Jyoti, Karen Roberto, and Rosemary Blieszner. "CARE NETWORKS OF RURAL APPALACHIAN FAMILY CAREGIVERS AND PERSONS LIVING WITH DEMENTIA." Innovation in Aging 6, Supplement_1 (November 1, 2022): 194. http://dx.doi.org/10.1093/geroni/igac059.776.

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Abstract Dementia care research typically focuses on primary family caregivers with limited consideration of their engagement with a broader care network and the geographic area in which they reside. Using a mixed-methods approach, we analyzed care networks of 163 primary caregivers and their relative living with dementia in rural Virginia. Six distinct care network types emerged based on the primary caregiver's gender, relationship to the person living with dementia, and presence of other informal caregivers. Networks differed by the caregiver’s emotional connectivity with family/friends and feelings of caregiver strain, role overload, and loneliness. Caregivers’ service use attitudes and support service utilization varied across network types and across divergent economic resources of the rural counties in which families resided. Findings establish a framework for understanding the types and influences of care networks and tailoring services to support dementia family caregivers in diverse rural areas.

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Messias, Lisiane Alves dos Santos, Fátima Adriana D'Almeida Gazetta, Pedro Marco Karan Barbosa, and Zamir Calamita. "Conhecimento prático e sobrecarga na vida de cuidadores de idosos com demência." Scientia Medica 28, no. 3 (August 31, 2018): 30569. http://dx.doi.org/10.15448/1980-6108.2018.3.30569.

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AIMS: To analyze the level of knowledge and the life overload of caregivers of elderly people with dementia, correlating these variables with sociodemographic aspects and type of relationship between caregiver and elderly.METHODS: A cross-sectional study was conducted between 2016 and 2017, with caregivers of elderly people with dementia seen at the Geriatrics outpatient clinic of the Hospital das Clínicas, Medical School of Marília, in Marília / SP, Brazil. The study included caregivers who accompanied the elderly to the consultations and participated in an important way in their care, comprising family caregivers and contractors without kinship ties. The data were collected through two instruments: the first was the Caregiven Burden Scale questionnaire, which evaluates the subjective impact of overload on the caregiver, and whose overall score can vary from 01 (lower overload) to 04 (higher overload). The second was a questionnaire prepared by the authors, which evaluated the caregiver's usual knowledge about the practice of care, whose scores ranged from zero (no correct answers) to 08 (all correct answers). The distribution curve of the variables was analyzed by the Kolmogorov-Smirnov test, the correlations were analyzed by the Spearman test and the comparison of the means used the Analysis of Variance. The results were considered statistically significant when p<0.05.RESULTS: Fifty-two caregivers were included in the study, with a mean age of 55.9±14.4 years, of which 85% were female. Forty-four (84.6%) caregivers had some degree of kinship with the elderly. Regarding knowledge about the practice of care, the mean number of correct answers was 5.5±1.8. There was a positive correlation with statistical significance between the caregiver's level of education and the practical knowledge about care. In the assessment of the caregivers overload, the overall mean was 1.83±0.16. The dimension with the highest mean (2.06±0.37) was the general tension, which refers to the difficulties of solving problems when caring for the elderly. Regarding the type of relationship between caregiver and elderly, the highest overload (2.48±0.53) was identified in the wives.CONCLUSIONS: The higher level of education of the caregiver was associated with better quality of care. The greatest caregiver life overload was identified in wives.

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Buchanan, Robert J., and Chunfeng Huang. "The Need for Mental Health Care Among Informal Caregivers Assisting People with Multiple Sclerosis." International Journal of MS Care 15, no. 2 (June 1, 2013): 56–64. http://dx.doi.org/10.7224/1537-2073.2012-030.

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The objective of this study was to identify characteristics of informal caregivers and people with multiple sclerosis (MS) receiving assistance that are associated with the caregiver's perceived need for mental health care. Survey data were collected in interviews with 530 caregivers and analyzed using a logistic regression model. We found that older caregiver age significantly decreased the odds of caregivers' perceived need for mental health treatment. Better mental health domains of health-related quality of life among caregivers, as measured by the 8-item Short Form Health Status Survey (SF-8), also were associated with decreased odds of the need for mental health care. In contrast, the caregiver's feeling that providing assistance was emotionally draining or the belief that this assistance threatened the caregiver/care recipient relationship significantly increased the odds of caregivers' needing mental health treatment. Health professionals treating informal caregivers should be sensitive to the impact that providing assistance has on the emotions, relationships, and mental health needs of caregivers.

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Frias, Cindy E., Esther Cabrera, and Adelaida Zabalegui. "Informal Caregivers’ Roles in Dementia: The Impact on Their Quality of Life." Life 10, no. 11 (October 23, 2020): 251. http://dx.doi.org/10.3390/life10110251.

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The constantly changing process of caring for a person with dementia affects the informal caregivers’ role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver’s role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers’ quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients’ cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer’s Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers’ outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers (p < 0.001). Caregiver burden (p < 0.001), psychological wellbeing (p < 0.001) and negative aspects of caregiving on health (p < 0.001) correlated moderately with informal caregivers’ quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver’s role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential.

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Angelika, Putu Veby, The Maria Meiwati Widagdo, Widya Christine Manus, and Silvester Haripurnomo. "CORRELATION STUDY BETWEEN BURDENS AND THE QUALITY OF LIFE IN CAREGIVERS OF DEPENDENT ELDERLY IN PRAWIRODIRJAN VILLAGE." Journal of Widya Medika Junior 4, no. 2 (April 2022): 114–24. http://dx.doi.org/10.33508/jwmj.v4i2.3779.

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Background: Aging is synonymous with decreased body function due to natural factors (aging process) and diseases. The elderly who are unable to do their activities can cause dependence on the caregiver. In carrying out its role, the caregiver has burdens that can affect their life quality. Objective: To measure the correlation between the burden and the quality of life in caregivers of dependent elderly in Prawirodirjan Sub-district, Gondomanan District, Yogyakarta Municipality. Materials and Methods: This study used a cross-sectional method with a total sample of 33 participants. Caregiver burden was measured using the Zarit Burden Interview (ZBI) and Caregiver Reaction Assessment (CRA) questionnaires. Measurements of quality of life were conducted using the WHO QoL BREF questionnaire. Spearman rank correlation analysis was administered to conduct statistical analysis. Results: There were very significant negative correlations between the caregiver’s burden (ZBI) and WHO QoL BREF physical health domain, psychological domain, social relations domain, and environment domain. There were very significant positive correlations between the caregiver’s burden self-esteem caregiver’s domain (CRA) and WHO QoL BREF psychological domain. There was a significant negative correlation between the caregiver's burden of the family support domain (CRA) and WHO QoL BREF physical health domain, psychological domain, social relations domain, and environment domain. There was a significant negative correlation between the caregiver’s burden impacts on the financial domain (CRA) and WHO QoL BREF environment domain. There was a very significant negative correlation between the caregiver’s burden of daily schedule impact domain (CRA) and WHO QoL BREF environment domain as well as there was a very significant negative correlation between the caregiver’s burden of health impact domain (CRA) and WHO QoL BREF physical health domain. Conclusion: There is a significant correlation between burden and the quality of life of dependent elderly caregivers in Prawirodirjan Village, Gondomanan District, Yogyakarta Municipality. The higher the burden of a caregiver, the lower the caregiver's quality of life, and conversely.

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Yousaf, Aiza, Hira Iqbal, Rabeea Zubair, Muhammad Kashif, Danish Hassan, and Rizwan Ahmed. "Factors associated with caregiver burden among caregivers of cerebral palsy children." Professional Medical Journal 27, no. 08 (August 10, 2020): 1555–59. http://dx.doi.org/10.29309/tpmj/2020.27.08.3781.

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Cerebral palsy(CP) is the term for a group of brain disorders, caused by damage to parts of the developing brain that control muscle movement, balance, and posture before birth, during birth, or immediately after birth. Caregivers of children with CP often experience high levels of caregiving burden. Objectives: The aim of this study was to explore correlation of factors with the presence of burden on primary caregivers of CP children. Study Design: Cross-Sectional study. Setting: Department of Physiotherapy, Children Hospital, Lahore. Period: March 2017 to June 2017. Material & Methods: Was conducted among caregivers of CP children to measure caregiver burden. The study sample consisted of a total of 100 caregivers was selected using non probability convenient sampling technique. Primary caregivers of a CP child (aged less than 18 years) were included. Caregiver Difficulties Scale (CDS) as used to measure caregiver burden. The data was analyzed and interpreted to measure the caregiver burden. Results: The mean age of caregivers participated in the study was 34.15± 6.76 years while mean age of their CP children was 6.35±4.52 years. Geographical area, socioeconomic status, caregiver’s age, total number of children and CP child’s age and gender showing correlation with caregiver burden by having significant p- value < 0.05. Conclusion: Geographical area, socioeconomic status, caregiver’s age, total number of children and CP child’s age and gender have significant association with caregiver burden while types of cerebral palsy and degree of disability has no correlation with caregiver burden.

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Chou, Yueh-Ching, Li-yeh Fu, Li-Chan Lin, and Yue-Chune Lee. "Predictors of subjective and objective caregiving burden in older female caregivers of adults with intellectual disabilities." International Psychogeriatrics 23, no. 4 (August 12, 2010): 562–72. http://dx.doi.org/10.1017/s1041610210001225.

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ABSTRACTBackground: Informal, unpaid, and lifelong older caregivers of adults with intellectual disabilities (ID) are usually female and most often are mothers of adults with ID. However, research exploring different predictors of subjective and objective burden among these older female caregivers is sparse. The objective of this study was to examine whether the subjective and objective burden as well as positive appraisals are predicted by the same or different variables linked to the caregivers and the adults with ID.Methods: Face-to-face interview questionnaires were administered in a city in Taiwan in 2006–2007 and 350 female family caregivers aged 55 years and older completed the interview in their homes. The independent variables included adult care demands and caregiver variables, while the dependent variables were caregivers’ subjective burden, caregivers’ objective burden and caregivers’ positive appraisals.Results: The results demonstrated that adult care demands were associated more with the objective than the subjective caregiving burden. The strongest predictors of both subjective and objective burden were the care recipient's instrumental activities of daily living functionality, caregiver's age, and caregiver's health status. The significant predictors for positive caregiving appraisals were the caregiver's age and the caregiver's level of social support.Conclusions: The results indicate that both the subjective and objective burdens were mostly related to the same factors, that is, to the characteristics of the older female caregivers and the recipients of care with ID. On the other hand, positive attitudes towards caregiving roles were only associated with caregiver variables.

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Krishnan, Shilpa, Haobin Tony Chen, Sarah Caston, and Seunghwa Rho. "Physical and Psychological Burden among Caregivers of Latinx Older Adults with Stroke and Multimorbidity." Ethnicity & Disease 33, no. 4 (December 1, 2023): 156–62. http://dx.doi.org/10.18865/ed.33.4.156.

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Objective To investigate the association between Latinx older adults’ stroke, multimorbidity, and caregiver burden. Methods For this retrospective cohort study, we used the Hispanic Established Populations for the Epidemiologic Study of the Elderly (H-EPESE) Wave-7 data set. The caregiver’s physical burden was defined by using the Level of Burden Index. The caregiver’s psychological burden was measured by using the Perceived Stress Scale (PSS-4). Multimorbidity was defined as the presence of 3 or more chronic conditions. Results The average age of the Latinx adults was 86 years, and the caregivers were 56 years. Latinx older adults and caregivers were more likely to be females (66% and 75%). Most caregivers were children (71%). Twelve percent of Latinx older adults presented with stroke, and 50% presented with multimorbidity. Caregiver physical burden was stratified into 3 levels: low (43%), medium (17%), and high (40%) burden. The cumulative logit model revealed that caregivers caring for those with stroke or multimorbidity had a high physical burden. Family caregivers and caregivers with a higher household income had a low physical burden. Caregivers with multimorbidity had a higher psychological burden. Caregivers who were interviewed in Spanish and those with higher household incomes had decreased psychological burden. Conclusion This study revealed that caregivers had a higher physical burden among caregivers of Latinx adults with stroke or multimorbidity. Future studies must investigate the relationship between Latinx adults’ stroke and caregiver psychological health, and build culturally tailored policies and community interventions to support caregivers susceptible to high stress and burden.

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Braun, Michal, Mario Mikulincer, Anne Rydall, Andrew Walsh, and Gary Rodin. "Hidden Morbidity in Cancer: Spouse Caregivers." Journal of Clinical Oncology 25, no. 30 (October 20, 2007): 4829–34. http://dx.doi.org/10.1200/jco.2006.10.0909.

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Purpose This study assesses psychological distress among advanced cancer patients and their spouse caregivers, while examining the relative contribution of caregiving burden and relational variables (attachment orientation and marital satisfaction) to depressive symptoms in the spouse caregivers. Methods A total of 101 patients with advanced GI or lung cancer and their spouse caregivers were recruited for the study. Measures included Beck Depression Inventory–II (BDI-II), Caregiving Burden scale, Experiences in Close Relationships scale, and ENRICH Marital Satisfaction scale. Results A total of 38.9% of the caregivers reported significant symptoms of depression (BDI-II ≥ 15) compared with 23.0% of their ill spouses (P < .0001). In a hierarchical regression predicting caregiver's depression, spouse caregiver's age and patient's cancer site were entered in the first step, objective caregiving burden was entered in the second step, subjective caregiving burden was entered in the third step, caregiver's attachment scores were entered in the fourth step, and caregiver's marital satisfaction score was entered in the fifth step. The final model accounted for 37% of the variance of caregiver depression, with subjective caregiving burden (β = .38; P < .01), caregiver's anxious attachment (β = .21; P < .05), caregiver's avoidant attachment (β = .20; P < .05), and caregiver's marital satisfaction (β = −.18; P < .05) making significant contributions to the model. Conclusion Spouse caregivers of patients with advanced cancer are a high-risk population for depression. Subjective caregiving burden and relational variables, such as caregivers' attachment orientations and marital dissatisfaction, are important predictors of caregiver depression.

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Grivel, Charlotte, Pierre Nizet, Manon Martin, Solange Pécout, Aurélie Lepeintre, Yann Touchefeu, Sonia Prot-Labarthe, Adrien Evin, and Jean-François Huon. "The experience of being a caregiver of patients with digestive cancer, from patients and caregivers’ perception: A mixed study." PLOS ONE 18, no. 7 (July 21, 2023): e0287335. http://dx.doi.org/10.1371/journal.pone.0287335.

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Backgrounds Caregivers are essential in the care of a patient with digestive cancer. Considering their experience and needs is crucial. Objectives To explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. Methods A mixed-methods study with a cross-sectional prospective and a comprehensive qualitative dimension was performed in a medical oncology unit in a French tertiary hospital. Dyads made of patients with digestive cancer and their caregiver were recruited. The Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC) questionnaires were distributed to caregivers. The CRA was used to measure the caregiver burden and the SCNS-PC was used to identify the unmet supportive care needs of caregivers. Semi-structured interviews with the dyads were conducted. Qualitative interviews addressed various dimensions of the caregiver’s experience from each dyad’s member perspective. Results Thirty-two caregivers completed the questionnaires. Responses showed high self-esteem, schedule burden, and a need for care and information services. Ten dyads participated in the interviews. Three themes emerged from the caregiver’s interviews: illness is an upheaval; loneliness and helplessness are experienced; caring is a natural role with positive outcomes. Four themes emerged from patient’s interviews: the caregiver naturally assumes the role and gets closer; he is the patient’s anchor; his life is disrupted; anxiety and guilt accompany the desire to protect him. In comparing patient and caregiver data, the main theme of disagreement was their relationship. Conclusions Caregiver care does not appear to be optimal, particularly in terms of their need for information. Patients have a fairly good representation of their experience, but the caregivers’ opinion need to be considered.

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Dissertations / Theses on the topic "Caregivers"

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Kaushik, Sanjana. "Social Networks of Technology Caregivers and Caregivees." University of Cincinnati / OhioLINK, 2020. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1613749933487134.

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Nauser, Julie Ann. "Heart failure family caregivers psychometrics of a new quality of life scale and variables associated with caregiver outcomes /." Connect to resource online, 2007. http://hdl.handle.net/1805/1139.

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Thesis (Ph.D.)--Indiana University, 2007.
Title from screen (viewed on September 21, 2007). School of Nursing, Indiana University-Purdue University Indianapolis (IUPUI). Advisor(s): Tamilyn Bakas, Sharon Sims, Mary L. Fisher, Janet Welch. Includes vitae. Includes bibliographical references (leaves 228-244).

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Kum, Cleopatra Eghem. "Theoretically Based Factors Affecting Health in Stroke Family Caregivers." University of Cincinnati / OhioLINK, 2021. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1627660913055465.

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Kimemia, Veronica. "CAREGIVER BURDEN AND COPING RESPONSES FOR FEMALES WHO ARE THE PRIMARY CAREGIVER FOR A FAMILY MEMBER LIVING WITH HIV/AIDS IN KENY." Doctoral diss., University of Central Florida, 2006. http://digital.library.ucf.edu/cdm/ref/collection/ETD/id/2682.

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Caring for a family member who is ill can be a draining experience (Cooper et al., 2006; Daire, 2002; Zarit et al, 1980). Providing care for a family member that is living with HIV/AIDS is potentially even more stressful because of social meanings associated with HIV/AIDS infection (Stajduhar, 1998) and the contagious nature of the HIV virus (Powell-Cope & Brown, 1992). Research indicates that most caregivers are female (Bunting, 2001; Songwathana, 2000). In Africa women bear the brunt of the burden of providing care for family members who are living with HIV/AIDS (Mushonga, 2001; Olenja, 1999). This study examined coping factors and caregiver burden among female caregivers (N=116) of a family member living with HIV/AIDS in Kenya. Coping factors were derived from a principal components factor analysis of the fourteen scales on the Brief Cope (Carver, 1997). Caregiver burden was measured using the Zarit Caregiver Burden Inventory. Multiple regression analysis was used to investigate the relationships between caregiver burden and coping factors. Post–hoc multiple regression analyses further investigated the relationship between caregiver burden and caregiver demographic characteristics. The relationship between caregiver burden and care recipient characteristics was also investigated. The principle components factor analysis of the Brief Cope yielded five coping factors that were labeled: Social support, Hope, Acceptance, Planning, and Disposition. The regression analysis that was conducted to investigate the relationships between these five coping factors and caregiver burden indicated a significant inverse relationship between Hope and caregiver burden. The post-hoc analyses investigating the relationship between various caregiver and care recipient characteristics indicated a significant relationship between the caregiver's age and caregiver burden, and education level and caregiver burden. An increase in age correlated with a decrease in caregiver burden. An increase in education level correlated with reduced caregiver burden. Implications of the findings for research and practice are discussed.
Ph.D.
Department of Child, Family and Community Sciences
Education
Counselor Education

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Demirtepe, Dilek. "Testing The Caregiver Stress Model With The Caregivers Of Children With Leukemia." Master's thesis, METU, 2008. http://etd.lib.metu.edu.tr/upload/12609327/index.pdf.

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The aim of the present study was to investigate the relationship between the stressors of the caregiving process and the health related outcomes (depression, anxiety, and general psychological health) in caregivers of children with leukemia. Caregiver Stress Model was used as the conceptual framework for the study. In order to measure the stressors of the caregivers, caregiver well-being scale was adapted to Turkish culture as the study 1 by using the caregivers of family members with various chronic illnesses. The analyses showed that Turkish version of the caregiver well-being scale had satisfactory psychometric properties for Turkish caregivers. The sample of the study 2 was composed of 100 caregivers of children with leukemia, who were treated at oncology or hematology departments of hospitals in Ankara and izmir, Turkey. Nine mediation models were tested using problem focused coping, emotion focused coping, and social support as mediators. The models included primary stressors (caregiving tasks and basic needs) and secondary stressors (interpersonal relationships and role strain) as independent variables
and depression, anxiety, and general psychological health as dependent variables. The findings suggested that emotion focused coping and social support were significant mediators of the relationships between the stressors and the outcomes, however, problem focused coping was not a significant mediator. Different patterns of significant relationships were found between the primary stressors, secondary stressors, and the outcome variables. However, caregiving tasks was not significantly predicting of any of the outcome variables. The strengths and limitations, as well as the implications of the findings, were discussed.

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Konag, Ozlem. "Testing The Caregiver Stress Model With The Primary Caregivers Of Schizophrenic Patients." Master's thesis, METU, 2011. http://etd.lib.metu.edu.tr/upload/12613797/index.pdf.

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The aim of this study was to examine the relationship between the stressors of caregiving for a schizophrenic patient and related outcomes. The Caregiver Stress Model was used as the conceptual framework for the current study. The sample of the study was composed of 98 Turkish caregivers of schizophrenic patients who were treated at psychiatry clinics of hospitals in Ankara. Twelve mediation models were tested using marital satisfaction and social support as mediators. The models contained primary stressor (basic needs), secondary stressor (activities of living), and intrapsychic strain (parental efficacy) as independent variables
and depression and general psychological health as dependent variables. The results suggested both social support and marital satisfaction as significant mediators of the relationships of both primary and secondary stressors with the outcome variables
however, social support and marital satisfaction were not significant mediators of the relationships between parental efficacy and outcome variables. The significant implications and limitations of the study were also discussed.

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Coolbear, Jennifer. "Caregiver-infant interactions and caregivers' representations of relationships in failure to thrive." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 2000. http://www.collectionscanada.ca/obj/s4/f2/dsk2/ftp02/NQ56222.pdf.

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Salinas, Maureen R. "Caregiver Burden and Depressive Symptoms in Hispanic Caregivers of Alzheimer's Disease Patients." Scholarship @ Claremont, 2016. http://scholarship.claremont.edu/scripps_theses/795.

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Caregiving for a close family member with Alzheimer’s disease is a stressful situation to be in, that often leads to high levels of caregiver burden and subsequent stress and depressive symptoms, and while there are numerous community and government resources available to caregivers, there are aspects of Hispanic cultures that may lead Hispanic caregivers to have higher levels of caregiver burden and depressive symptoms than White caregivers. 80 Hispanic caregivers and 80 White caregivers, with 40 males and 40 females within each group, will be recruited to participate in this study. Scales will be administered to both Hispanic and White caregivers in order to assess levels of caregiver burden, depressive symptoms, familism values, gender role beliefs, acculturation levels, and knowledge, comfort, and use of community resources. Hispanic caregivers will have higher levels of caregiver burden and depressive symptom scores than White caregivers, while women will have higher scores overall than men overall. Hispanic caregivers will have less knowledge, comfort, and use of community resources than White caregivers, while gender role views, familism values, and acculturation levels will be mediating factors of these relationships. Cultural differences in caregiver burden need to be assessed further, so that clinical and practical implications for community and government resources can be discussed.

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King, Jennifer Kay. "Caregiving Style in Diverse Samples of Caregivers." Thesis, University of North Texas, 2006. https://digital.library.unt.edu/ark:/67531/metadc5363/.

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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.

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Patel, Bina Ranjit. "A Mixed Methods Inquiry of Caregivers of Veterans with Sustained Serious "Invisible" Injuries in Iraq and/or Afghanistan." Scholar Commons, 2016. http://scholarcommons.usf.edu/etd/6562.

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Currently, there are approximately 1.1 million caregivers who are caring for veterans who have served in the military following September 11 (9/11), 2001 (Ramchand et al., 2014). In this study, a mixed methods analysis of post 9/11 caregivers enrolled in the North Florida South Georgia Caregiver Support Program was completed with a convenience sample of 172 participants for quantitative analysis which included 16 participants for the phenomenological query. Correlations, t-tests, and ANOVAs were used to determine the associations among race, gender, age, caregiver type, diagnosis, tier level, and the presence of children in the home with caregiver burden as measured by the Zarit caregiver burden inventory (ZBI). T-tests resulted in a significantly higher ZBI with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = -2.36, p=.02. An ANOVA was conducted across caregiver role (parent, spouse, significant other and other) and the ZBI and a significant difference was found (F [3, 159] = 1.59, p < .01, with spousal caregivers having a significantly higher ZBI score (M=6.83; SD=3.10) than parental caregivers (M = 4.46; SD=2.70). The phenomenological research focused on shared lived experiences of post 9/11 caregivers of seriously injured veterans, including their experiences with the Caregiver Support Program, the impact of having children in the home, and the utilization of technology and online support with caregiving. Differences between spousal and parental caregivers were also explored. The caregivers’ shared experiences resulted in 22 major themes which included family adjustment, subjective demands, coping techniques, social support, Veterans Affairs (VA) and Department of Defense (DOD) services, self-care, intimacy, role strain, financial resources, and life course changes as the most prevalent. Caregivers and their families had a difficult time adjusting post injury, particularly with subjective demands. Caregivers relied mainly on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers tended to have more difficulty adjusting than did parental caregivers, which was also found in the quantitative study. While the Caregiver Support Program provided many services that were helpful to the caregivers, including a financial stipend, they wanted additional services which included additional financial support and services while citing issues with program implementation and staffing as major barriers. Children added complexity to the caregiving relationship and increased burden. Children displayed behavioral changes, mostly negative, but some positive such as giving both the caregiver and the veteran a sense of purpose. Lastly, technology and online support with caregiving was used more often than not with mixed feelings about the technology and its trustworthiness; with parents not utilizing these resources as much as spousal caregivers. The study concludes with implications for current and future social work practice and research, as well as the study’s strengths and limitations.

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Books on the topic "Caregivers"

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Duncan, Boyd Marlyn, and Hale Janet Fraser, eds. The caregiver's guide: For caregivers and the elderly. Chicago: Nelson-Hall, 1992.

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Elliot, Linda K. Growing great kids for child caregivers: Child caregiver curriculum. [San Angelo, Tex.?]: Great Kids, 2002.

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Sheehan, Pauline J. Hugs for caregivers. Mukilteo, WA: WinePress Pub., 1998.

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Arizona. Aging and Adult Administration and United States. Administration on Aging, eds. Volunteer caregivers program. [Phoenix?]: Arizona Dept. of Economic Security, Aging and Adult Administration, 1992.

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Schonhoff, Shelly. Family caregivers guide. Dubuque, Ia: Simon & Kolz Pub., 1998.

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J, Kramer Betty, and Thompson Edward H, eds. Men as caregivers. Amherst, N.Y: Prometheus Books, 2005.

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Boulden, Jim. The caregivers handbook. Santa Rosa, CA (P.O. Box 9358, Santa Rosa 95405): J. Boulden, 1991.

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Navarra, Tova. Wisdom for caregivers. Thorofare, NJ: Slack, Inc., 1995.

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1936-, Moroney Robert, and Davis Pam, eds. Caring & competent caregivers. Athens, Ga: University of Georgia Press, 1998.

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Gates, Katherine, book designer, editor, ed. Cartoons for caregivers. United States]: River Inkers, 2013.

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Book chapters on the topic "Caregivers"

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Abrams, David B., J. Rick Turner, Linda C. Baumann, Alyssa Karel, Susan E. Collins, Katie Witkiewitz, Terry Fulmer, et al. "Alzheimer's Caregivers." In Encyclopedia of Behavioral Medicine, 74. New York, NY: Springer New York, 2013. http://dx.doi.org/10.1007/978-1-4419-1005-9_100063.

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Zarit, Steven H., and Courtney A. Polenick. "Caregivers’ Outcomes." In Encyclopedia of Gerontology and Population Aging, 1–11. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-319-69892-2_8-1.

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Yan, Elsie. "Primary Caregivers." In Encyclopedia of Gerontology and Population Aging, 1–3. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-319-69892-2_851-1.

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Marbach, Christina. "Young Caregivers." In Encyclopedia of Child Behavior and Development, 1587–88. Boston, MA: Springer US, 2011. http://dx.doi.org/10.1007/978-0-387-79061-9_3147.

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Parker, Gordon, Gabriela Tavella, and Kerrie Eyers. "Forgotten caregivers." In Burnout, 118–31. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003333722-14.

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Ferrell, Betty R., and Polly Mazanec. "Family Caregivers." In Geriatric Oncology, 135–55. Boston, MA: Springer US, 2009. http://dx.doi.org/10.1007/978-0-387-89070-8_7.

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Perper, Joshua A., and Stephen J. Cina. "Contagious Caregivers." In When Doctors Kill, 187–91. New York, NY: Springer New York, 2010. http://dx.doi.org/10.1007/978-1-4419-1369-2_19.

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Siskowski, Connie. "Adolescent caregivers." In How caregiving affects development: Psychological implications for child, adolescent, and adult caregivers., 65–91. Washington: American Psychological Association, 2009. http://dx.doi.org/10.1037/11849-002.

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Zarit, Steven H., and Courtney A. Polenick. "Caregivers’ Outcomes." In Encyclopedia of Gerontology and Population Aging, 796–806. Cham: Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-22009-9_8.

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Yan, Elsie. "Primary Caregivers." In Encyclopedia of Gerontology and Population Aging, 3958–60. Cham: Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-22009-9_851.

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Conference papers on the topic "Caregivers"

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Naswa, Raghav, Sugam Jaiswal, Remya Mavila, Weichao Yuwen, Bill Erdly, and Dong Si. "Assessing Empathy in Mental Health Caregivers using Conversational AI." In 2024 IEEE 12th International Conference on Healthcare Informatics (ICHI), 538–40. IEEE, 2024. http://dx.doi.org/10.1109/ichi61247.2024.00079.

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Gerassi, Renata, Larissa de Andrade, Maria Candanedo, Carolina Tsen, Décio Neto, and Juliana Ansai. "CAREGIVER SATISFACTION FOR TELEREHABILITATION AND FOLLOW-UP INTERVENTION FOR ELDERLY FAMILIES WITH DEMENTIA." In XIII Meeting of Researchers on Alzheimer's Disease and Related Disorders. Zeppelini Editorial e Comunicação, 2021. http://dx.doi.org/10.5327/1980-5764.rpda075.

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Background: Understanding the satisfaction with telerehabilitation as a positive evaluation of the individual about the service offered, this is a fundamental aspect to measure the quality of care and the relevance of these services provided. Objective: Compare the caregiver’s satisfaction to a telerehabilitation program and to a remote follow-up for families of elderly people with dementia. Methods: Randomized clinical trial, with blinding of the evaluator, controlled by two groups: Intervention (IG) and Control (CG). In the initial assessment, 10 caregivers of elderly people with dementia were included. The IG received the telerehabilitation program, with standardized physical exercise for the elderly and guidance to the caregiver. The GC had the monthly monitoring by phone calls. After 12 weeks, the caregiver’s satisfaction was assessed using an online questionnaire based on the Short Assessment of Patient Satisfaction, with a score between 0 and 28. Results: Satisfaction of 10 caregivers was assessed so far, with 5 caregivers for each group. The average IG was 25.4 points, representing a positive differential of 12.9% in relation to the CG that reached an average of 21.8 points. Conclusion: The previous results in relation to the satisfaction of the telerehabilitation program suggest its potentiality as an aid in providing care to the elderly with dementia.

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Cendrasilvinia, Herose, The Maria Meiwati Widagdo, and Widya Christine Manus. "Burden and Quality of Life of Dependent Elderly Caregivers in Pakuncen Village Yogyakarta." In The 7th International Conference on Public Health 2020. Masters Program in Public Health, Universitas Sebelas Maret, 2020. http://dx.doi.org/10.26911/the7thicph.01.08.

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Background: Elderly people face health problems associated with reduced health and increased disability. Dependent elderly on caregivers who cause a burden affecting the quality of life of caregivers. The aim of this study was to analyze the correlation between the burden and quality of life among dependent elderly caregivers. Subjects and Method: A cross-sectional study was carried out in Pakuncen Village, Yogyakarta. The study subjects were 30 informal caregivers who cared for their family member aged ≥ 60 years with moderate dependence. Instruments used to screen dependent elderly included Activities of Daily Living (ADL) and Instrument Activities of Daily Living (IADL) to measure level of independence, MMSE and AD-8 to assess cognitive function of elderly. Caregivers aged ≥ 60 years underwent MMSE and those with scores <24 was excluded. Caregivers’ burden ware measured using The Zarit Burden Interview (ZBI) and Caregiver Reaction Assessment (CRA). Measurements of quality of life among caregivers was conducted by WHOQOL-BREF. Data were analyzed using Spearman-rank correlation. Results: Out of 30 caregivers, 24 were female and 6 were male with an average age of 49 years. Most respondents had light to moderate burden (Mean= 34.27; SD=18.94). Caregivers’ quality of life were low (<60) in psychological (Mean= 58.17; SD= 12.31), social relation (Mean= 59.77; SD= 9.04), and the environment domains (Mean= 51.90; SD= 10.00). Caregivers’ quality of life was high (≥60) in physical health domain (Mean= 63.30; SD=12.83). There were negative correlations between caregiver burden (ZBI and CRA) and the quality life of caregivers (WHOQOL-BREF). Conclusion: In Yogyakarta, the burden of caregivers (ZBI and CRA) and the quality of caregivers’ lives (WHOQOL-BREF) are negatively correlated. Keywords: caregiver, burden, quality of life, dependent, elderly Correspondence: Herose Cendrasilvinia. Faculty of Medicine, Universitas Duta Wacana Christian, Yogyakarta. Jl. Dr. Wahidin Sudirohusodo 5-25 Yogyakarta, 55224. Email: herosecendrasilvinia@gmail.com. Mobile: 081226466770. DOI: https://doi.org/10.26911/the7thicph.01.08

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Pappachen, Nikitha, and Maithri Goud. "Relationship Between Caregiver Burden and Socioeconomic Status." In 28th Annual Rowan-Virtua Research Day. Rowan University Libraries, 2024. http://dx.doi.org/10.31986/issn.2689-0690_rdw.stratford_research_day.176_2024.

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In this study, caregiver burden measures the psychosocial strain a caregiver experiences as a result of caring for a person with autism. In addition, this study focuses on the effect of socioeconomic status on caregiver burden. A previous study found an association between lower primary caregiver education level and more sleep problems for children with autism3. Thus, the finding focuses on the child with autism as opposed to the caregiver burden. Other studies focus on elements that affect caregiver burden such as sleep quality, mental health, and cultural aspects. If it is known that socioeconomic status significantly affects caregiver burden, resources can be diverted to support those caregivers in an equitable manner. This is crucial due to the high value of services caregivers provide in the United States ($470 billion in 2013)1. Using scores from caregiver inventory forms from the Regional Integrated Special Needs Center in New Jersey and the zip codes retrieved from patient data, we were able to find median income from ZIP codes through census.gov. Then, using linear regression, we did not find a significant association between average total score from caregiver inventory forms and average median income. Interestingly, this may point to an overestimate of quality of life from caregivers in spite of low SES as seen in one study6. It may also be because of other confounding factors such as mental health, gender, and sleep quality on the caregivers. This study opens the door to more research to be done on socioeconomic status’ effects such as controlling for extraneous variables as well as using other methods to measure SES such as education level of caregivers.

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Mathew, Brian Joseph, Maduka Gunasinghe, Usmaan Al-Shehab, Samrat Gollapudi, Prince Patel, and Maithri Goud. "Factors Affecting Caregiver Burden in Informal Caregivers of Patients with Autism Spectrum Disorder." In 28th Annual Rowan-Virtua Research Day. Rowan University Libraries, 2024. http://dx.doi.org/10.31986/issn.2689-0690_rdw.stratford_research_day.188_2024.

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Individuals with Autism Spectrum Disorder (ASD) often require lifelong care to meet their daily needs, which is typically provided by informal sources like family members as well as formal caregivers from home health agencies. The persistent stress of raising a child with ASD can potentially lead to parental burnout, highlighting the importance of understanding the struggles faced by these caregivers. Clinicians must prioritize the well-being of both the individuals with ASD and their dedicated caregivers by gaining a comprehensive understanding of the challenges they encounter. Our research aims to investigate and comprehend the specific challenges faced by caregivers of individuals diagnosed with ASD. By utilizing the Caregiver Burden Inventory (CBI; Novak & Guest, 1989), we sought to pinpoint the primary elements that contribute to caregiver burden and evaluate how it affects the wellbeing of caregivers. These findings can ultimately lay the foundation for targeted interventions and strategies aimed at lessening the burden on caregivers, ensuring they receive the necessary support to provide optimal care for their loved ones with ASD while maintaining their own well-being.

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Asano, Katsuhiro, Shinichiro Ota, and Jinro Takato. "Evaluation of Power-Assisted Wheelchair to Reduce Burden on Elderly Caregivers." In ASME 2023 International Mechanical Engineering Congress and Exposition. American Society of Mechanical Engineers, 2023. http://dx.doi.org/10.1115/imece2023-112498.

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Abstract The purpose of this study is to verify the effectiveness of a mechanical power-assisted wheelchair that does not require electrical charging for its operation. In this study, we investigated the burden experiences by a caregiver when pushing the wheelchair along with the assistive force with and without the power assistance. First, the wheelchair was tested on a slope where the caregiver would feel strain while pushing the wheelchair, and the wheelchair pushing force and sensory evaluation were measured. The results showed that the caregiver’s pushing force was independent of the implementation of power assist in the wheelchair, and the sensory evaluation indicated that the power assist wheelchair was effective. Furthermore, to investigate the inherent assist force of the power-assisted wheelchair, we conducted a static experiment without the caregiver and compared the results with theoretical values of the assist force. The static experiment showed that the power-assisted device exerted an assist force in the direction of the wheelchair motion. The static experiment showed that the power-assisted wheelchair was not effective in the dynamic experiment with the caregiving participants but was effective in the static experiment without the caregivers. In addition, the reasons for the differences in assist force between the static and dynamic experiments were discussed.

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Moreira, Verônica, Valquiria Nedel, Márcia Lorena Chaves, Raphael Castilhos, and Maira Olchik. "DYSPHAGIA ASSOCIATED CAREGIVER BURDEN IN ALZHEIMER DISEASE." In XIII Meeting of Researchers on Alzheimer's Disease and Related Disorders. Zeppelini Editorial e Comunicação, 2021. http://dx.doi.org/10.5327/1980-5764.rpda047.

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Background: Dysphagia is prevalent in Alzheimer’s disease (AD) and can influence caregivers’ burden. Objectives: Evaluate the impact of feeding process in caregivers’ burden of individuals with AD. Methods: This is a cross-sectional study. Caregivers of individuals with AD who attended the dementia outpatient clinic and are over 18 years of age were included. We collected demographic variables and the Zarit Burden Interview - Short Version (ranging from 0 to 48) and The Edinburgh Feeding Evaluation in Dementia Scale (scoring from 0 to 20) scales. Relationship between the two scales and demographic variables were sought. Results: 38 caregivers were included, with a mean age of 55.2 (± 4) years, 68.4% female, 76.3% spouses and with an average time as a caregiver of 4.6 (± 3.1) years, the same average of the patients’ disease time. 71% caregivers do not report changes in the patient’s diet and 92.1% were never instructed about the feeding process during the course of the disease. The aspects “the patient requires close supervision while feeding” (p=0.024) and “there is spillage while feeding” (p=0.004) were correlated and showed an impact on the level of burden. Conclusion: Despite the short period of illness and no dietary changes, tasks related to food impact the burden of the caregivers.

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Gustafson, Kimberly, William Durfee, Gregory Voss, Andrew Hansen, and Gary Goldish. "A LIGHTWEIGHT, FOLDABLE MOTORIZED TRANSPORT CHAIR TO EASE CAREGIVER BURDEN." In 2023 Design of Medical Devices Conference. American Society of Mechanical Engineers, 2023. http://dx.doi.org/10.1115/dmd2023-6138.

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Abstract As the population ages, the number of caregivers in the Unites States is growing rapidly. The burden on these caregivers is exacerbated by steadily increasing obesity rates, which are highest in adults aged 50 to 70. The Caregiver-Assist Transport Chair (CATC) is designed to address the difficulty many caregivers experience assisting in the transportation of moderate to low mobility care recipients outside of the home for appointments, community engagements, or fresh air excursions. It is not uncommon for the caregiver to be elderly or of a smaller build than the care recipient, increasing the difficulty of pushing a transport chair for extended distances or across uneven or unlevel terrain. The CATC is equipped with intelligent motorized wheels that engage in the forward or reverse directions to maintain a consistently low effort required from the caregiver, independent of the weight of the care recipient. The chair assists on uphill terrain and slows on downhill descents to match the walking speed of the caregiver. In addition, the chair has a drop-down footplate mechanism that eliminates the need for the legs of the care recipient to be lifted onto foot pedals once seated. This footplate also serves as a brake to eliminate safety concerns associated with the chair rolling back as the user transitions between sitting and standing. While the CATC contains motorized elements, unlike a typical motorized wheelchair, it is lightweight, foldable, and easy to maneuver in and out of a vehicle.

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Kim, Yongchul, Younghyun Kim, Youngseon Yang, Woochul Park, and Kunmin Rhee. "The Movement Analysis of Caregivers for Transferring of Disabled Person From Wheelchair to Car Seat." In ASME 2009 Summer Bioengineering Conference. American Society of Mechanical Engineers, 2009. http://dx.doi.org/10.1115/sbc2009-206445.

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The aim of this study was to examine the influence of seat height on the movement of caregiver for transferring of a disabled person from wheelchair to car seat. Five female volunteers served as caregivers; two persons with disabilities and one health volunteer served as passive disabled person. To analyze the movement of a caregiver, we measured the activities of six muscles with surface electrodes and joint angle responses of the hip and knee with electrical goniometers. The caregivers performed transferring task at three different seat heights (400, 500 and 600mm from the floor) in order to investigate the effects of a car seat on transferring movement of a people with disability. From the experimental results, when caregivers were putting a disabled person down a seat, the hip and knee joint angles were decreased 31.9% and 24.7% in 600mm seat height than 400mm seat height, respectively. The integrated EMG activity of erector spinae was decreased 16.3% in 600mm seat height, compared with 500mm seat height. However, the integrated EMG activity of rectus femoris for lower limb in 600mm seat height was increased 33.3% than 500mm seat height.

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Bezerra, Karolina, José Machado, Celina P. Leão, Filomena Soares, Vitor Carvalho, and Demétrio Matos. "Requirements for the Development of Medical Devices: Caregivers Perspectives Survey." In ASME 2016 International Mechanical Engineering Congress and Exposition. American Society of Mechanical Engineers, 2016. http://dx.doi.org/10.1115/imece2016-67002.

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The growth of the elderly population enhances the importance of the quality of the healthcare, which should be administered daily by professionals, whether on a temporary or permanent basis. A core issue to take into account, in this context, is the characterization of these services, especially their adaptation to the specific needs of the bedridden people. In doing so, the quality of life of caregivers, in what concerns facilitating their daily tasks, is also taken into account. A questionnaire was developed to gather information allowing the characterization of both needs and gaps in healthcare identifying the particularities and necessities of the provided services. The questionnaire focuses on three targets: the bedridden characterization, the permanent caregiver and the non-permanent caregiver. The study is descriptive and exploratory, contemplating a quantitative approach. The main objective of the study is to define the important areas worthy of attention, to protect the healthcare of caregivers in the utilization of devices and to be able to build products without structural problems, thus, creating better condition of life and offer solutions in some contexts and tasks, such as, comfort, hygiene and safety.

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Reports on the topic "Caregivers"

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Raimondi, Alessandra. Oklahoma Caregivers Support a Family Caregiver Tax Credit. Washington, DC: AARP Research, February 2023. http://dx.doi.org/10.26419/res.00597.001.

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Wu, Huijing. Coresident Grandparents: Caregivers versus Non-Caregivers. National Center for Family & Marriage Research, January 2018. http://dx.doi.org/10.25035/ncfmr/fp-18-02.

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DiAngelo, Lucy, Libby Lowry, Kayla McDaniel, Clare Sauser, Shelby Terry, and Erin Williams. Increasing Confidence and Mental Health in Caregivers. University of Tennessee Health Science Center, May 2021. http://dx.doi.org/10.21007/chp.mot2.2021.0011.

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The purpose of our critically appraised topic is to synthesize the highest-level evidence available regarding interventions for increasing confidence and mental health outcomes in caregivers taking loved ones home from inpatient rehabilitation. The final portfolio contains six research articles from peer-reviewed journals. Study designs include randomized control trials, a systematic review, and a pretest-posttest without a control group. All studies relate directly to the components of the PICO question. Four of the articles discussed both caregiver confidence and mental health while two articles discussed only mental health. There is strong evidence to support that in-person hands on training, in person discussion-based training, and/or virtual resources helped increase confidence in caregivers of patients. There is mixed evidence and only limited improvement to support mental health. The findings from this critically appraised topic will be used to draft new ideas for practice guidelines for addressing caregiver education and caregiver mental health in an inpatient rehabilitation facility.

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Guengerich, Terri. Support Family Caregivers: Support a Family Caregiver State Income Tax Credit: Infographic. AARP Research, September 2019. http://dx.doi.org/10.26419/res.00259.090.

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Oliveira, Lélia, Larissa Pedreira, Ana Paula Jesus, Flávia Ferreira, Ivana Pinto, Jeferson Santos, and Catarina Araújo. Hospital-home transitional care and support for home caregivers of elderly people with functional dependence: a scoping review. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, March 2022. http://dx.doi.org/10.37766/inplasy2022.3.0143.

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Review question / Objective: The review questions of this scoping are: 1. How does hospital-home transitional care support home caregivers of functionally dependent elderly people? 2. How is hospital-home transitional care applied to support home caregivers of elderly people with functional dependence? 3. What experiences of transitional hospital-home care were successful in supporting home caregivers of elderly people with functional dependence? The objective of this scoping review is to identify the hospital-home transitional care offered as support to the home caregiver of elderly people with functional dependence. Information sources: Medline/Pubmed, CINAHL, Scopus, Web of Science, LILACS and Embase will be used. As gray literature, the CAPES Digital Library of Theses and Dissertations and the OpenGrey platform will be evaluated.

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Squiers, Linda, Mariam Siddiqui, Ishu Kataria, Preet K. Dhillon, Aastha Aggarwal, Carla Bann, Molly Lynch, and Laura Nyblade. Perceived, Experienced, and Internalized Cancer Stigma: Perspectives of Cancer Patients and Caregivers in India. RTI Press, April 2021. http://dx.doi.org/10.3768/rtipress.2021.rr.0044.2104.

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Cancer stigma may lead to delayed diagnosis and treatment, especially in low- and middle-income countries. This exploratory, pilot study was conducted in India to explore the degree to which cancer stigma is perceived, experienced, and internalized among adults living with cancer and their primary caregivers. We conducted a survey of cancer patients and their caregivers in two Indian cities. The survey assessed perceived, experienced, and internalized stigma; demographic characteristics; patient cancer history; mental health; and social support. A purposive sample of 20 cancer survivor and caregiver dyads was drawn from an ongoing population-based cohort study. Overall, 85 percent of patients and 75 percent of caregivers reported experiencing some level (i.e., yes response to at least one of the items) of perceived, experienced, or internalized stigma. Both patients (85 percent) and caregivers (65 percent) perceived that community members hold at least one stigmatizing belief or attitude toward people with cancer. About 60 percent of patients reported experiencing stigma, and over one-third of patients and caregivers had internalized stigma. The findings indicate that fatalistic beliefs about cancer are prevalent, and basic education about cancer for the general public, patients, and caregivers is required. Cancer-related stigma in India should continue to be studied to determine and address its prevalence, root causes, and influence on achieving physical and mental health-related outcomes.

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Wagner, Jesse, Hanan Aboumatar, and Jonathan R. Treadwell. Engaging Family Caregivers with Structured Communication for Safe Care Transitions. Agency for Healthcare Research and Quality (AHRQ), April 2024. http://dx.doi.org/10.23970/ahrqepc_mhs4engaging.

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Objectives. To summarize recent relevant literature on patient safety practices (PSPs) focused on engaging family caregivers with structured communication during care transitions and assess the effectiveness of these PSPs to improve safety during care transitions. This review provides information for clinicians, health system leaders, and policymakers to better inform approaches to engaging family caregivers with structured communication to improve safety during care transitions. Methods. We followed rapid review processes provided by the Agency for Healthcare Research and Quality Evidence-based Practice Center Program. We searched PubMed, Embase, and the Cochrane Library for eligible studies published in 2010 through June 30, 2023, supplemented by targeted gray literature searches and review of reference lists in relevant systematic reviews. We used prespecified inclusion and exclusion criteria to assess relevant studies conducted in the United States that analyzed the effect of structured communication on care transitions with family caregivers. Prespecified clinical and patient-related outcomes included healthcare utilization, symptom exacerbation, quality of life, satisfaction, and unintended harms, among others. Findings. We identified 323 unique citations for possible inclusion; we assessed 86 full-text articles for inclusion. We included nine studies on effectiveness (2 randomized controlled trials, 6 pre-post studies, and 1 single-arm study) which assessed PSPs focused on discharge to home, transfers from intensive care units, and transitions from residential care. In residential treatment facility discharges, we found PSPs improved caregiver satisfaction (low strength of evidence [SOE]). We found insufficient evidence of other PSPs on any other included outcomes. Five studies detailed implementation facilitators, and two studies noted specific barriers to PSP implementation. While no studies specifically reported the resources required to implement PSPs, based on study descriptions, we identified four prominent resource considerations: (1) allocated time for pre-implementation intervention development and staff training; (2) designated time to deliver PSPs to family caregivers; (3) technology-based resources; (4) staff-expertise/addition training for designated roles. None of the studies reported rates of unintended harms. Conclusions. Clear communication with patients and caregivers during care transitions is important, but there is little evidence on the effectiveness of these PSPs. Included studies showed improvement in caregiver satisfaction, but more high-quality research is needed to assess the effectiveness of PSPs and unintended harms.

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David, Patty, and Colette Thayer. Who Are Today's Caregivers? Washington, DC: AARP Research, July 2020. http://dx.doi.org/10.26419/res.00391.003.

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Kakulla, Brittne. Technology Trends Among Caregivers. Washington, DC: AARP Research, September 2023. http://dx.doi.org/10.26419/res.00584.014.

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Raimondi, Alessandra, and Vicki Levy. Caregivers Find Travel Rewarding. Washington, DC: AARP Research, June 2024. http://dx.doi.org/10.26419/res.00804.003.

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