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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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Davis, Abigail Oluwadunni, Oladapo Michael Olagbegi, Kayode Orekoya, Mathew Adekunle, Olufemi Oyeleye Oyewole, Modinat Adepoju, and Oluyemisi Soetan. "Burden and quality of life of informal caregivers of children with cerebral palsy." Rev Rene 22 (May 3, 2021): e61752. http://dx.doi.org/10.15253/2175-6783.20212261752.
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Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.
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Novak, Mark, and Carol Guest. "Caregiver Response to Alzheimer's Disease." International Journal of Aging and Human Development 28, no. 1 (January 1989): 67–79. http://dx.doi.org/10.2190/4w02-hlmk-hamj-utqp.
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Research on Alzheimer's Disease caregivers has tried to find a link between 1) the length of time a caregiver has been giving care; or 2) the physical condition of the patient and the experiences and needs of the caregiver. This study found no significant correlation between length of time a caregiver had given care to a particular patient and the caregiver's subjective feelings of caregiver burden. It found a significant, moderate correlation between caregiver burden and the patient's functional ability. It found that caregivers' subjective feelings and needs best predict their feelings of burden. This report concludes with suggestions on how to improve support for caregivers in light of these findings.
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Parker Oliver, Debra, George Demiris, Karla Washington, Robin L. Kruse, and Greg Petroski. "Hospice Family Caregiver Involvement in Care Plan Meetings: A Mixed-Methods Randomized Controlled Trial." American Journal of Hospice and Palliative Medicine® 34, no. 9 (July 27, 2016): 849–59. http://dx.doi.org/10.1177/1049909116661816.
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Background and Objective: Untrained family caregivers struggle with complicated medical management regimens for hospice patients. An intervention was tested to improve caregiver’s perception of pain management and patient’s pain. Design, Setting, and Participants: The intervention was tested with a 2-group (usual care vs intervention) randomized controlled trial using parallel mixed-methods analysis of 446 caregivers in 3 Midwestern hospice programs representing rural and urban settings. Intervention: Web conferencing or telephones were used to connect caregivers with the hospice care team during care plan meetings. Measurements: Caregiver’s perceptions of pain management were the primary outcome. Secondary outcomes included caregiver quality of life, patient’s pain, and anxiety. Video recordings, field notes, and caregiver and staff interviews provided qualitative data. Results: The overall perception of pain management was not changed by the participation in hospice team meetings. Perceptions of fatalism improved for intervention participants, and the intervention participants perceived their patients’ pain was better controlled than those in the control group. The intervention was found to be feasible to deliver in rural areas. Caregiver’s anxiety and patient’s pain were correlated ( r = .18; P = .003), and subanalysis indicated that caregivers of patients with cancer may benefit more from the intervention than other hospice caregivers. Qualitative analyses provided understanding of caregiver’s perceptions of pain, cost, and facilitators and barriers to routine involvement of family in care plan meetings. Limitations and Conclusion: The hospice philosophy is supportive of caregiver involvement in care planning, and technology makes this feasible; the intervention needs modification to become translational as well as additional measurement to assess effectiveness. Caregiver education and emotional support should occur outside the meeting, and a strong leader should facilitate the meeting to control efficiency. Finally, the intervention may benefit caregivers of patients with cancer more than others.
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Chiari, Annalisa, Barbara Pistoresi, Chiara Galli, Manuela Tondelli, Giulia Vinceti, Maria Angela Molinari, Tindara Addabbo, and Giovanna Zamboni. "Determinants of Caregiver Burden in Early-Onset Dementia." Dementia and Geriatric Cognitive Disorders Extra 11, no. 2 (August 13, 2021): 189–97. http://dx.doi.org/10.1159/000516585.
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<b><i>Introduction:</i></b> Caregivers of patients with early-onset dementia (EOD) experience high levels of burden, which is known to be affected by caregivers’ psychological features as well as by patients’ and caregivers’ demographical and social variables. Although potential clinical, demographical, and social determinants have been separately examined, it is not known how they reciprocally interact. <b><i>Methods:</i></b> Ninety-two consecutive patient-caregiver dyads were recruited from the Cognitive Neurology Clinics of Modena, Northern Italy. Caregivers were asked to fill in questionnaires regarding their burden, psychological distress, and family economic status. Data were analyzed with multivariable regression models and then entered in a mediation model. <b><i>Results:</i></b> Caregiver burden was positively related to female caregiver sex, spousal relationship to the patient, severity of patient’s behavioral symptoms, diagnostic delay, and financial distress of the family. It was negatively related to disease duration, patient’s education, region of birth, caregiver age, number of caregiver’s days off work, number of offspring, and caregiver perception of patient’s quality of life. While the effect of caregiver age, diagnostic delay, and of proxies of family or social network directly impacted on caregiver’s burden, the effect of patient’s disease duration, being a wife caregiver, financial distress, and number of caregiver’s days off work was entirely mediated by the level of caregiver psychological distress. <b><i>Conclusions:</i></b> Both direct actions (such as increasing social networks and shortening diagnostic delay) and indirect actions aimed at reducing psychological distress (such as increasing the number of caregiver’s days off work and financial support) should be planned to reduce caregiver’s burden.
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Kim, Sun Kyung, Myonghwa Park, Yunhwan Lee, Seong Hye Choi, So Young Moon, Sang Won Seo, Kyung Won Park, et al. "Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia." International Psychogeriatrics 29, no. 2 (October 26, 2016): 227–37. http://dx.doi.org/10.1017/s1041610216001770.
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ABSTRACTBackground:Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression.Methods:Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers’ personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined.Results:Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL.Conclusions:Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.
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Savitri, Wenny, and Suwarno. "Kualitas Hidup Family Caregiver Pasien Kanker dan Faktor-Faktor yang Mempengaruhinya." MEDIA ILMU KESEHATAN 11, no. 1 (January 2, 2023): 46–55. http://dx.doi.org/10.30989/mik.v11i1.667.
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Background: The increase of cancer diagnosis in Indonesia needs special attention because cancer causes crisis not only in patient’s life but also to family caregivers. Studies depict that a family caregiver’s quality of life (QOL) influences patient’s. Therefore, it is necessary to pay special attention to the caregiver’s QOL to generate a holistic approach for cancer patients.Objective: This study aimed to portray family caregivers of cancer patients’ QOL and its associated factors.Methods: In this analytical crossectional study, 60 family caregivers of cancer patients were recruited. The Caregiver Quality of Life Index-Cancer (CQOLC) was used to assess the QOL of family caregivers and then analyzed using descriptive statistics and linear regression.Results: The mean age of the family caregiver was 40±13.67, and 53% were male. The mean score of CQOLC was 43.95 (±17.83). Age was negatively associated with CQOLC score (β= -3.389, p=.034) which meant positively associated with QOL whereas duration of caregiving (β= 2.167, p=.021), cancer stage (β= 1.299, p=.046), and burden of family caregiver (β= 1.292, p=.000) were positively associated with CQOLC score which meant negatively associated with QOL.Conclusion: The study found that the duration of caregiving, cancer stage, and burden were negatively associated with the QOL of the family caregiver. Nursing intervention such as caregiver assistant is needed to decrease the burden to family caregivers, especially when caring for cancer patients with advanced stages.
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Meinertz, Naomi. "POWERFUL TOOLS FOR CAREGIVERS: THE ESTABLISHED BENEFITS OF A PERSON-CENTERED CARE INTERVENTION." Innovation in Aging 7, Supplement_1 (December 1, 2023): 369–70. http://dx.doi.org/10.1093/geroni/igad104.1227.
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Abstract Family caregivers account for 89% of caregivers in the United States, yet few evidence-based family care programs focus specifically on the caregiver’s needs rather than the care receiver. The challenges that caregivers experience, such as increased depression symptoms and feelings of burden, impede their ability to fulfill their role as care partner and can lead to lasting health and financial issues. Intervention literature underscores the importance of using person-centered models to incite behavior change, yet many caregiver interventions do not address the caregiver’s needs and instead approach caregiving from a practical perspective to caregiving such as establishing a power of attorney or educating caregivers about dementia. Powerful Tools for Caregivers (PTC) is a six-week program designed to provide caregivers with the skills to address their unique care challenges. Within in-person or virtual sessions, caregivers are provided with the skills to improve caregiver self-efficacy, emotional management, self-care, and resource access and knowledge. The study integrates empirical findings and demonstrates the effectiveness of PTC in improving caregiver well-being in each focus area. Findings also highlight the benefits of the group-based activities as well as improved depressive symptoms and reduced caregiver stress and burden. This research also demonstrates the same effectiveness of delivery format (in-person or virtual mediums) and location (rural or urban settings). The success of PTC sheds light on the need for more programs to approach family care through the lens of a person-centered model and emphasizes the benefit of evidence-based programs.
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Leung, D. Y. P. "13 Caregiving Burden and Unmet Support Needs in Chinese Caregivers and Cancer Patients." Age and Ageing 50, Supplement_1 (March 2021): i1—i6. http://dx.doi.org/10.1093/ageing/afab028.13.
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Abstract Introduction Cancer burden continues to rise globally and locally. Due to the shift of the cancer care from the hospital to the community, many cancer patients requiring needs in palliative care from their informal caregivers. Many caregivers often taking up the important roles and responsibilities but their own needs are largely neglected, and hence may induce caregiving burden. This study aims to explore the relationships of caregiving burden with unmet support needs in both cancer patients and their caregivers. Method A convenience sample of 280 patient-caregiver dyads was recruited from the oncology outpatient clinic of two hospitals in Hong Kong between April and June 2018. Among them, 258 (92.1%) patient-caregiver dyads provided complete information on unmet supportive care needs (Patient: the 34-item SCNS-SF34-C, Caregivers: the 26-item SPUNS-SF), and caregiving burden (Caregiver Strain Index). Results Among the patients, their mean age was 60.8 (SD = 13.6) and 66% were female. Among the caregivers, their mean age was 49.3 (SD = 14.6), 67.2% were female, and 38.2% were children of the patient. Mean level caregiving burden in caregivers was 4.87 (SD = 3.75) out of a range 0–13. Regression analysis showed that higher caregiving burden was associated significantly with higher caregiver’s unmet support in personal and emotional needs (βstd = 0.348) and future concerns (βstd = 0.204), and patient’s unmet support in physical and daily living needs (βstd = 0.201), but lower caregiver’s unmet support in information needs (βstd = −0.233) after controlling for age, gender, and education level of both patients and caregivers. Conclusions The findings shed lights in designing interventions aim at reducing caregiving burden by targeting caregiver’s unmet support in personal and emotional need and those caregivers are taking care of cancer patients with unmet support in physical and daily living needs. However, the finding on caregiver’s unmet support in information needs was a protective factor of caregiving burden warrants further exploration.
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Woerpel, Allison J., Willie Winston, and Sonya S. Brady. "Stressful Life Circumstances, Resources for Support, and African American Children’s Psychological Symptoms." Journal of Black Psychology 43, no. 4 (April 26, 2016): 327–44. http://dx.doi.org/10.1177/0095798416645717.
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This brief report examines African American children’s and caregivers’ exposure to stressors and perceived support in relation to children’s internalizing and externalizing symptoms. Forty-six children aged 8 to 12 years and their primary caregivers were recruited from an urban school in the Midwestern United States and interviewed separately. Adjusting for child’s age and gender, caregiver’s gender, and number of caregivers in the family, child-reported stressful life events were associated with child-reported internalizing and externalizing symptoms. When children reported greater support from caregivers, children reported fewer externalizing symptoms and caregivers reported fewer oppositional behaviors and ADHD symptoms on the part of their child. Caregivers’ health- and relationship-related stressors were associated with child-reported externalizing symptoms, as well as caregiver-reported ADHD symptoms. Family-based mental health services within schools and communities may improve caregiver and child support systems, reduce caregiver-child conflict, and promote resilience to stress among urban, low-income African American families.
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Jutkowitz, Eric, Daniel Scerpella, Katherine Prioli, Katherine Marx, Laura N. Gitlin, Laura Pizzi, and Jonah Popp. "CHANGE IN DEMENTIA FAMILY CAREGIVERS’ WILLINGNESS TO PAY FOR A NONPHARMACOLOGIC INTERVENTION." Innovation in Aging 3, Supplement_1 (November 2019): S551. http://dx.doi.org/10.1093/geroni/igz038.2030.
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Abstract Family caregivers provide a majority of care for persons with dementia (PwD); however, little is known about caregiver’s willingness to pay (WTP) for an intervention to help them manage dementia symptoms. To fill this gap, caregiver/PwD dyads (n=223) were recruited to participate in a randomized trial evaluating tailored activities to minimize behavioral symptoms and functional decline. At baseline and 6-months caregivers were asked their WTP per session for the 8-session 3-month program compared to caregiver education/support only. At baseline, treatment caregivers were WTP $26.20, which was $11.50 (95%CI:-$12.70, -$10.3) less per session compared to control group caregivers WTP $37.30. At 6-months, treatment caregivers were WTP $22.90 and control caregivers $27.30. From baseline to 6-months, a change in WTP was $7.00 (95%CI:$5.80, $8.30) greater than the change in WTP for control group caregivers. Caregivers WTP slightly decreases over time in both groups but decrease is less for TAP following program participation.
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de Rosa, Cristina, Ashleigh Holmes, Weijun Wang, and Yu-Ping Chang. "POSITIVE CAREGIVING AND CAREGIVING RELATIONSHIP ASSOCIATION WITH MENTAL HEALTH AND PERCEIVED GENERAL HEALTH." Innovation in Aging 6, Supplement_1 (November 1, 2022): 542. http://dx.doi.org/10.1093/geroni/igac059.2057.
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Abstract Caregiver burden is well understood as an important contributor to caregiver health. However, little is known about how positive aspects of caregiving (i.e., personal growth, gratitude, finding meaning) and the quality of caregivers’ relationships with care recipients might play a role in caregiver health. The study aimed to examine whether positive caregiving and caregivers’ relationship with care recipients were associated with caregiver mental health (depression and anxiety) and perceived general health. The sample consisted of 2,652 family caregivers in the National Study of Caregiving (NSOC) III (2017) providing care to older adults. A series of multiple regression models with covariate adjustments (i.e., caregiver’s age, sex, and race/ethnicity) were performed to examine the associations. Results indicated that positive aspects of caregiving predicted caregiver mental health but did not predict perceived general health. Caregivers’ relationship with care recipients and caregiver burden significantly predicted caregiver mental health (b = 0.285 [S.E. = 0.045], p < .001) and perceived general health (b = 0.096 [0.016], p < .001). After controlling for caregiver burden, only caregivers’ relationship with care recipients remained a significant predictor of caregiver mental health (b = 0.182 [0.041], p < .001) and perceived general health (b = 0.077 [0.018], p < .001). Our results suggest that positive caregiving perceptions and quality of relationships between caregivers and care recipients are linked to better caregiver mental health. Interventions to reduce caregiver burden, including strategies to help caregivers maintain positive attitudes and positive relationships with care recipients, might be beneficial to improving caregiver health.
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Kristina, Hana, The Maria Meiwati Widagdo, and Teguh Kristian Perdamaian. "STUDY CORRELATION BETWEEN BURDEN AND QUALITY OF LIFE OF DEPENDENT ELDERLY CAREGIVERS IN KLITREN, YOGYAKARTA." Journal of Widya Medika Junior 4, no. 1 (January 2022): 1. http://dx.doi.org/10.33508/jwmj.v4i1.3321.
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Introduction: Elderly with disability need caregiver’s assistance in their activities of daily living. The caregiver can experience burden during caring for dependent elderly. The burden can affect caregiver’s quality of life. Objectives: to measure and test the correlation between dependent elderly’s caregiver burden and quality of life in Klitren Kampong, Gondokusuman District, Yogyakarta Municipality. Materials and Methods: The subjects were primary informal caregivers aged ≥ 18 years with good cognitive functions who caring for the elders with ADL score <12. Respondents were selected using consecutive sampling technique. This is a quantitative research with cross-sectional study design. Zarit Burden Interview and Caregiver Reaction Assessment were used to assessing caregiver’s burden. WHO Quality of Life-BREF was used to assess caregiver’s quality of life. Data was analysed using spearman’s rank correlation. Results: There were 21 female study subjects. In each of the CRA and ZBI domains, the caregivers’ burden tend to be low (mean=8.63±10.730–72.42±10.983). Caregivers’ quality of life tend to be low (mean=49.76±11.962–60.76±11.726). There is a strong and statistically significant correlation between the impact on finance (p=0.000, ρ=-0.678) and impact on health (p=0.002, ρ=-0.602) domain on CRA with the environmental domain of WHOQoL-BREF. There is a strong and statistically significant correlation between the impact on schedule domain on CRA with the psychological domain of WHOQoL-BREF (p=0,000, ρ=-0.683). Conclusion: There are significant correlations between caregivers’ burden and quality of life especially on certain domains. Caregivers with higher burden have lower quality of life.
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Currie, Janet M., Michele Mercer, Russ Michael, and Daniel Pichardo. "New Caregiver Diagnoses of Severe Depression and Child Asthma Controller Medication Adherence." International Journal of Environmental Research and Public Health 20, no. 11 (May 29, 2023): 5986. http://dx.doi.org/10.3390/ijerph20115986.
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Background and Objectives: Children with asthma who have depressed caregivers are known to be less adherent to medication regimes. However, it is less clear how adherence responds to a caregiver’s new diagnosis of severe depression or whether there is a similar relationship with other serious caregiver diagnoses. The hypothesis is that adherence worsens both with new diagnoses of depression and possibly with new diagnoses of other serious conditions. Methods: This study follows a cohort of 341,444 continuously insured children with asthma before and after a caregiver’s new diagnosis of severe depression or another serious health condition. The effect of a new depression diagnosis on a child’s medication adherence is compared to the effect of new diagnoses of other common caregiver chronic conditions including diabetes, cancer, congestive heart failure, coronary artery disease, and chronic obstructive pulmonary disease. Results: Results show that children’s medication adherence declines following a caregiver’s new diagnosis of severe depression, but that it also declines following a caregiver’s new diagnosis of diabetes. There is no association with new diagnoses of the other caregiver chronic conditions examined. Conclusions: Children whose caregivers have a new diagnosis of depression or diabetes may be at increased risk of deterioration in their medication adherence. These caregivers may benefit from additional support and follow-up. The relationship between caregivers’ health and children’s medication adherence is complex and deserves further study.
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Reckrey, Jennifer, Deborah Watman, and Emma Tsui. "Whose Decision Is It? Perspectives on Agency Involvement in Determining Paid Caregivers' Roles in Dementia Care." Innovation in Aging 5, Supplement_1 (December 1, 2021): 217. http://dx.doi.org/10.1093/geroni/igab046.836.
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Abstract Individuals living at home with dementia often rely on a team of caregivers and health care providers. Yet little is known about how the role of paid caregivers within this team is determined. We identified patients with moderate to severe dementia (n=9) and conducted individual interviews with their care teams (family caregiver, paid caregiver, physician) (n=27) to explore perspectives on paid caregiver roles. Participants disagreed on who determined the paid caregiver’s role. Agencies were perceived to set limitations on the scope of care (particularly by physicians) but agency care plans were often seen as inadequate and failing to capture important nuances of care. Most family caregivers believed they should guide what paid caregivers did in the home, while most paid caregivers reported relying on their own experience and knowledge. Understanding and addressing these differing perceptions is critical to improving the quality of paid care in the home.
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Joy, Jomon, Hussain Khan T. J., Pretty M. Abraham, and Sreedas Gopalakrishnan. "Burden and resilience in caregivers of patients on maintenance haemodialysis." International Journal of Research in Medical Sciences 7, no. 11 (October 24, 2019): 4033. http://dx.doi.org/10.18203/2320-6012.ijrms20194586.
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Background: Chronic renal failure is one among the chronic illness which due to persistence of the disease has various effects on the physiological, psychological and functional ability of the patient and his family. Although haemodialysis has become a highly safe medical procedure that significantly extended life of such patients, it is nevertheless a stressful and lengthy treatment process. The task of personal life care for such patients falls primarily on the family members. The caregiver is expected to aid in patient’s daily life activities resulting in increased physical and emotional burden. With the considerable level of burden involved the concept of resilience thus become crucial as they could function as protective factors. The current study aims to assess the level of caregiver burden and resilience in caregivers of haemodialysis patients.Methods: A cross sectional observational study was done in 120 caregivers of patients diagnosed as having ESRD on maintenance hemodialysis. Zarit Burden Interview was used for assessing caregiver’s burden. Brief Resilience Scale was used to assess caregiver’s resilience.Results: 35.8% of caregivers had severe caregiver burden while looking after dialysis patients while 45% of caregivers had moderate burden. Caregivers showed low resilience about 72.5% which displays poor problem solving and emotion-focused coping strategies.Conclusions: The study shows that more than 80% of caregivers suffered from moderate to severe burden and poor resilience among them would be a contributing factor. The study also shows that female caregivers were most affected. The burden was significantly higher in caregivers as the years spent on caregiving increased and more hours spent per day looking after the patients. Health-care providers need to address these concerns based on both patient- and caregiver-focused approaches, rather than only patient focused.
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Kim, Yoonjoo. "The Impact of Depression on Quality of Life in Caregivers of Cancer Patients: A Moderated Mediation Model of Spousal Relationship and Caring Burden." Current Oncology 29, no. 11 (October 27, 2022): 8093–102. http://dx.doi.org/10.3390/curroncol29110639.
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Family caregivers play an important role in managing and supporting cancer patients. Although depression in family caregivers is known to negatively affect caregiver health, the mechanism by which it affects caregivers is not clear. The purpose of this study was to explore the influence of depression on quality of life (QoL) in family caregivers of patients with cancer. Specifically, this study examined (1) whether caring burden mediates the relationship between depression and QoL, and (2) how this mediating effect varies depending on the caregiver’s relationship with the patient. This study performed a secondary analysis on cross-sectional survey data. Ninety-three family caregivers of cancer patients were included in the study. Moderated mediation analyses were conducted using PROCESS macro with the regression bootstrapping method. The moderated mediation models and the indirect effect of caregiver depression on QoL through caring burden were significantly different depending on caregivers’ relationships with patients (i.e., spousal or non-spousal). Specifically, the indirect effect of caregiver depression on QoL was greater for the patient’s spouse than for other family caregivers. Healthcare providers should focus on identifying caregivers’ depression and relationship with the patient and offer tailored support and intervention to mitigate the caring burden and improve the caregivers’ QoL.
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Li, Lun, and Yeonjung Lee. "Caregiving Choice and Caregiver-Receiver Relation: Effects on Psychological Well-being of Family Caregivers in Canada." Canadian Journal on Aging / La Revue canadienne du vieillissement 39, no. 4 (February 10, 2020): 634–46. http://dx.doi.org/10.1017/s0714980819000825.
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ABSTRACTThe psychological well-being of family caregivers is influenced by their relations with care receivers, and whether they have choice in becoming a caregiver. Limited study has explored the interaction effect of caregiver-receiver relations and caregiving choice on caregivers’ psychological well-being. This study examines whether the caregiver’s perceived choice moderates the association between caregiver-receiver relation and psychological well-being. Using population-based data from the 2012 Canada General Social Survey – Caregiving and Care Receiving (n = 5,285), this study applies regression and ANCOVA analyses. Results show family caregivers for spouses and children report significantly worse psychological well-being, whereas having choice to become a caregiver is associated with better psychological well-being. There was a significant moderation effect of caregiving choice on the association between caregiver-receiver relation and psychological well-being. Findings suggest that more services should be targeted for family caregivers without choice for caregiving as well as those who provide care for their children.
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Beverly, Alexis, Christina Baucco, Seho Park, Matthew Schroeder, Shelley Johns, Katherine Judge, and Nicole Fowler. "THE RELATIONSHIP BETWEEN SOCIOECONOMIC DISADVANTAGE AND DEMENTIA CAREGIVER BURDEN." Innovation in Aging 6, Supplement_1 (November 1, 2022): 769. http://dx.doi.org/10.1093/geroni/igac059.2786.
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Abstract More than 16 million people provide unpaid care to someone with Alzheimer’s disease or a related dementia (ADRD) in the United States. These caregivers frequently report experiencing psychological and physical burden. Prior research shows that socioeconomic disadvantaged neighborhoods have higher rates of ADRD, but little is known about caregiver burden. We hypothesized more socioeconomic disadvantage is associated with higher caregiver burden. We performed a secondary analysis using baseline data on dementia caregivers (n=132) enrolled in the Indiana University Telephone Acceptance and Commitment Therapy for Caregivers (TACTICs) pilot trials. Mean (SD) caregiver age was 61.6 (11.6) years; 83.3% women; 78.8% white; 19.7% black. Seventy-two percent of the caregivers lived with the care recipient and 50.8% reported moderate dementia severity. A linear regression model examined the relationship between caregiver’s national Area Deprivation Index (ADI) score (ranging from 1–100 with higher scores indicating greater socioeconomic disadvantage) and caregiver burden. The following covariates were included: age, sex, race, education, shared residence with care-recipient, health status, anxiety, depression, and dementia severity of care recipient. Higher ADI was associated with lower caregiver burden (β=-0.222, p < 0.001). Caregiver burden has a significant negative relationship with ADI and dementia severity (p<-.001 and 0.046, respectively) and positive relationship with anxiety (p=0.014) controlling other covariates in the model. Although we found no support for the hypothesis, further research should examine these factors with how caregiver’s ADI may impact other psychosocial wellbeing outcomes. Discussion will highlight the need for caregivers to have access to resources that can aid them through their experience.
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Ramasamy, Thendral, Surendran Veeraiah, and Kalpana Balakrishnan. "Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer - A Mixed-method Study." Indian Journal of Palliative Care 27 (November 25, 2021): 503–12. http://dx.doi.org/10.25259/ijpc_76_21.
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Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver’s appraisal of caregiving and (4) caregiver’s perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver’s life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.
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Putri, Yossie Susanti Eka, I. Gusti Ngurah Edi Putra, Annida Falahaini, and Ice Yulia Wardani. "Factors Associated with Caregiver Burden in Caregivers of Older Patients with Dementia in Indonesia." International Journal of Environmental Research and Public Health 19, no. 19 (September 29, 2022): 12437. http://dx.doi.org/10.3390/ijerph191912437.
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This cross-sectional study aimed to identify caregiver burden and its determinants in the informal caregivers of older patients with dementia (PWDs) aged ≥ 60 years in Java, Indonesia. Data were collected from 207 caregivers of older PWDs using self-administered questionnaires. The dependent variable was caregiver subjective burden, assessed using the Zarit Burden Interview (ZBI). The independent variables included the socio-demographic characteristics of PWDs and caregivers, the caregiver’s perceived social support, and the behavioural and psychological symptoms of dementia (BPSD). Linear regression with a stepwise elimination method was used to identify the factors associated with caregiver burden. This study found that four factors were associated with the caregiver burden, such as the gender of PWDs, the educational level of caregivers, social support, and BPSD (R-squared = 27.78%). Higher burden was reported among the caregivers of female PWDs (β = 5.58; 95%CI = 2.16; 8.99) and PWDs with higher scores of BPSD (β = 0.34; 95%CI = 0.25; 0.43). Meanwhile, the caregivers with higher perceived social support (β = −0.26; 95%CI = −0.42; −0.10) and who completed high school education and above (β = −6.41; 95%CI = −10.07; −2.74) tended to have lower scores of subjective burden. These findings suggest that BPSD management and maintaining the resources of support may provide an opportunity to minimise caregiver burden and improve the quality of life of caregivers and PWDs.
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Jiang, Hantao, and Xueqing Wang. "HEALTHY CAREGIVER SELECTION AMONG DEMENTIA CAREGIVERS: THE ROLE OF SOCIAL SUPPORT." Innovation in Aging 6, Supplement_1 (November 1, 2022): 872–73. http://dx.doi.org/10.1093/geroni/igac059.3117.
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Abstract As of 2019, more than 4 million older adults aged 65+ in the United States are cognitively impaired, including the diagnoses of mild cognitive impairment (MCI) and dementia. Caregivers to these older adults bear significant burden, reflected as high prevalence of chronic stress and mental health problems among the caregiver population. It is thus crucial to understand the wellbeing of the caregiver population to design effective policies. Previous studies have documented survival advantage of dementia caregivers compared to non-caregiving individuals as well as other types of caregivers, namely caregivers to persons with MCI or other types of chronic conditions. However, it remains less clear how the role of social support explains dementia caregiver’s survival advantage. In this paper, we directly compare the level and type of social support between different types of caregivers, and examine to what extent the difference in social support explains the survival and health advantage of dementia caregivers compared to caregivers to persons with MCI, non-cognitive impairment chronic conditions and non-caregiving individuals. We use the 12 waves of the Health and Retirement Study and apply multivariate and survival analysis to calculate difference in age-specific hazard ratios. Our preliminary results show that dementia caregivers tend to secure stronger support from family members than caregivers to persons with MCI. Our results have potential to shed light on the empirical puzzle of healthy caregiver selection effect and have direct implications for designing effective intervention to improve health of the caregiver population.
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Kulkarni, Shubham S., Chaitanya Patil, Yogesh S. Anap, Prasad K. Tanawade, Parag J. Watve, and Aditya S. Pawar. "Quality of Life of Primary Caregivers Attending a Rural Cancer Centre in Western Maharashtra: A Cross-Sectional Study." Indian Journal of Medical and Paediatric Oncology 42, no. 03 (May 2021): 268–72. http://dx.doi.org/10.1055/s-0041-1735664.
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Abstract Introduction Caregiver plays a vital role in taking good care of a cancer patient. But often, the caregiver’s quality of life (QOL) is overlooked. Objectives This study aimed to understand the Caregiver QOL Index—Cancer (CQOL-C) score of the primary caregivers and to find the significant predictors affecting CQOL-C. Materials and Methods A cross-sectional study was conducted among the caregivers attending a rural cancer center in western Maharashtra. The primary caregiver is an immediate relative who assists the patient in most routine activities and is not a professional caregiver. A pretested and predesigned questionnaire using the CQOL-C scale was used to interview the caregivers from December 2019 to June 2020. We analyzed the data using Statistical Package of Social Sciences (SPSS) software. Univariate analysis was done using Student’s t-test and a multivariate model was generated using linear regression analysis of the data. Results A total of 114 caregivers were interviewed. The mean total CQOL-C score was 44.15 ± 17.24 (confidence interval [CI]: 41–47.3). About 71% of the caregivers reported moderate-to-severe hampering of their QOL. The mean CQOL-C scores in caregivers of patients with and without recurrent cancer were 58.24 (CI: 51.66–64.81) and 40.58 (CI: 37.35–43.80), respectively (p < 0.001). The mean CQOL-C scores in caregivers of patients with and without metastatic cancer were 56.68 (CI: 51. 13–62.22) and 39.80 (CI: 36.45–43.14), respectively (p < 0.001). The mean CQOL-C score in caregivers of patients with hematological malignancies was 60.03 (CI: 58.88–61.17) which was significantly higher compared with other sites (p = 0.0257). Conclusion The majority of the caregivers in our study have moderate-to-severe detrimental QOL. Recurrence of cancer and metastatic cancer at presentation are the two significant factors affecting CQOL-C. There is an unmet need to cater to the primary caregiver’s concerns while we focus on treating cancer patients.
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Hu, Mengyao, Dena Schulman-Green, Emma Zang, and Bei Wu. "POSITIVE ASPECTS OF CAREGIVING IN DIFFERENT CAREGIVER GROUPS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 66–67. http://dx.doi.org/10.1093/geroni/igac059.264.
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Abstract Previous studies have disproportionately focused on caregivers’ negative experiences while overlooking the positive aspects of caregiving (e.g., quality of caregiver – care recipient relationship, meaningfulness of caregiving, and family cohesiveness) especially for caregivers of older adults with cognitive impairment. Therefore, we aim to identify how positive aspects of caregiving varied by care recipients’ cognitive status (e.g., normal, mild cognitive impairment, dementia) and caregivers’ relation to care recipients (e.g., spouse, adult child, other family member). We applied multilevel mixed-effects models on pooled three-wave data from the National Study of Caregiving and the National Health and Aging Trends Study (N = 2,717). The findings suggested that dementia and spouse caregivers had worse relationship with their counterparts. Overall, future research needs to study caregiver’s experience integratively and focuses on caregiver’s individual need. Policy makers need to fulfill caregiver’s demands by establishing socially supportive programs.
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Ruisoto, Pablo, Marina Ramírez, Belén Paladines-Costa, Silvia Vaca, and Vicente Javier Clemente-Suárez. "Predicting Caregiver Burden in Informal Caregivers for the Elderly in Ecuador." International Journal of Environmental Research and Public Health 17, no. 19 (October 8, 2020): 7338. http://dx.doi.org/10.3390/ijerph17197338.
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Informal caregivers are the main providers of care for the elderly. The aim of this study is to examine the predictive value of different variables regarding caregivers and their elderly patients with respect to the caregiver’s burden. A convenience sample of 688 informal caregivers and 688 elderly people from Ecuador was surveyed. Only households with one caregiver and one elderly person were considered for the study. For informal caregivers, the following standardized measures were obtained: burden (Zarit Burden Interview), neuroticism (Eysenck Personality Questionnaire Revised-Abbreviated, EPQR-A), caregiver’s general health (GHQ-12), and social support (modified Duke-UNC Functional Social Support Questionnaire, FSSQ11). For the elderly, we employed standardized measures of cognitive function (short portable mental status questionnaire, SPMSQ), Pfeiffer’s test, and functional dependency (Barthel scale/Index, BI). Females were over-represented in caregiving and reported significantly higher burden levels than those of males. In both male and female caregivers, the burden was best predicted by the time of caring, neuroticism, and elderly cognitive impairment. However, some predictors of burden were weighted differently in males and females. The functional independence of the elderly was a significant predictor of burden for male caregivers but not females, while caregiver competence was a significant predictor for females but not males. These variables accounted for more than 88% of the variability in informal caregivers.
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Gallanis, Tony. "THE EFFECT OF ACTIVITIES OF DAILY LIVING ON FAMILY CAREGIVER SOCIAL ISOLATION." Innovation in Aging 3, Supplement_1 (November 2019): S899. http://dx.doi.org/10.1093/geroni/igz038.3286.
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Abstract Social isolation has been shown to associate with negative health outcomes including depression and stress. For family caregivers of older adults, the demands on the caregiver often are associated with increasing feelings of loneliness and decreased social contact. The degree to which the caregiver’s social isolation is related to the complexity of the caregiving situation remains unknown. Through a cross-sectional analysis of 526 family caregivers from the Family Caregiver Alliance client record database, an association has been established between care recipient functional decline and caregiver social isolation. Social isolation was measured through the Lubben Social Network Scale and functional decline was measured through ADL/IADL reporting. Covariates controlled for in the analysis included caregiver ethnicity, duration of caregiving, adult child status, caregiver education, care recipient income, and hours per week caregiving. Family caregivers of care recipients with higher functional decline experienced elevated odds of social isolation as compared to family caregivers of care recipients with little to no functional decline. The results from this study highlight the need for medical personnel and non-profit actors to anticipate social isolation as a risk factor for family caregivers of older adults given the care recipient is experiencing functional decline.
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Zuo, Yan, Bi-Ru Luo, Wen-Tao Peng, Xin-Ru Liu, Ya-Lin He, and Jian-Jun Zhang. "Informal caregiver burden and influencing factors in gynaecological oncology patients hospitalized for chemotherapy: a cross-sectional study." Journal of International Medical Research 48, no. 11 (November 2020): 030006052097492. http://dx.doi.org/10.1177/0300060520974927.
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Objective To determine the level and influencing factors of informal caregiver burden in gynaecological oncology inpatients receiving chemotherapy. Methods This cross-sectional study enrolled gynaecological oncology patients and their informal caregivers between May 2018 and November 2018 and measured the caregivers’ burden using the Caregiver Burden Inventory. The influencing factors were evaluated with univariate regression analysis and multivariate linear stepwise regression analysis. Results A total of 138 patients and their informal caregivers completed the questionnaire. The mean ± SD total informal caregiver burden score was 53.18 ± 10.97. The highest mean ± SD score was recorded in the dimension of time-dependent burden (14.28 ± 2.74), followed by developmental burden (13.65 ± 2.15), physical burden (10.52 ± 2.07), social burden (7.61 ± 2.58) and emotional burden (7.12 ± 1.43). Multivariate analysis showed that the informal caregiver’s sex, relationship to the patient, daily duration of care, presence of chronic health problems and the duration of the patient’s disease were factors influencing the level of caregiver burden. Conclusions The informal caregivers of gynaecological cancer patients hospitalized for chemotherapy experience a moderate level of burden. Nursing measures should be considered to reduce informal caregiver burden and improve the quality of lives of both patients and their caregivers.
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Lee, Cecilia, Jessica Brian, Yona Lunsky, Kenneth Fung, Rachelle Ashcroft, Rebecca Lerner, and Melanie Penner. "17 Caregiver Mental Health Needs in Caregiver-Mediated Early Intervention." Paediatrics & Child Health 28, Supplement_1 (September 1, 2023): e7-e8. http://dx.doi.org/10.1093/pch/pxad055.017.
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Abstract Background Caregivers of autistic children face high levels of stress and are at risk of developing mental health disorders. Caregivers participating in caregiver-mediated early interventions (CMIs), such as the Social ABCs, where they provide the intervention to their young child, juggle many responsibilities to their child and family, leaving self-care as the last priority. Caregivers may not seek mental health support, though interventions for caregiver stress, such as acceptance and commitment therapy (ACT), exist. This study represents the first step in addressing the gap in mental health supports for caregivers who are participating in CMIs. Objectives To understand the mental health needs of caregivers participating in a CMI. Design/Methods This study utilized reflexive thematic analysis with a constructivist approach to explore caregivers’ experiences of a CMI, the Social ABCs. Demographic information was collected and semi-structured interviews were conducted with 13 caregivers from the Greater Toronto Area (Ontario, Canada). Interviews were coded and themes were generated from the codes. Themes were revised based on feedback from the research team and member-checking. Results Demographic data revealed that participants included mothers and fathers from a range of racial/ethnic backgrounds and from mainly dual-parent households with 1-2 autistic children. Participants of the Social ABCs virtual and in-person group-based and individual formats from 2018-2021 were included. Four central themes derived from this study illustrate the mental health needs of caregivers participating in the Social ABCs, including: social emotional connection, caregiver wellness tied to child’s success, perceived wellness needs and culturally sensitive care (Figure 1). Given the emotional intensity of caregivers’ experiences early in their journey with their young child, social emotional connection refers to the caregiver’s need to connect with other caregivers or professionals with understanding of their experiences in a psychologically safe environment. In navigating supports for their child and early intervention in particular, caregivers may place an overwhelming focus on building their child’s skills. This emphasis on seeing their child progress directly impacts a caregiver’s own wellness, as illustrated by the theme caregiver wellness tied to child’s success. Despite caregivers acknowledging the importance of their own mental health and well-being or their perceived wellness needs, caregivers may prioritize their own wellness needs below the needs of their child and family. The provision of culturally sensitive care was also highlighted as it poses a barrier to accessing wellness supports for already marginalized caregivers. Conclusion Caregivers identify a need for culturally sensitive, psychologically safe formal and informal social supports in the context of a CMI. Given the intense focus caregivers may have on supports for their child, clinicians should deliver balanced messaging about the importance of the child’s skill development and caregiver wellness, as there may be bidirectional impacts. Future research on CMI should consider ways to address caregiver mental health needs to optimize overall family functioning.
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Yu, Hua, Li Wu, Shu Chen, Qing Wu, Yuan Yang, and Helen Edwards. "Caregiving burden and gain among adult-child caregivers caring for parents with dementia in China: the partial mediating role of reciprocal filial piety." International Psychogeriatrics 28, no. 11 (June 3, 2016): 1845–55. http://dx.doi.org/10.1017/s1041610216000685.
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ABSTRACTBackground:The majority of the family caregivers are adult children in China. The aim of this study was to examine the mediating role of reciprocal filial piety (RFP) between the care recipient's behavioral and psychological symptoms of dementia (BPSD) and the caregiver's burden or gain among adult-child caregivers caring for parents with dementia in China.Methods:Using Kramer's caregiver adaptation model as the research framework, a cross-sectional survey collected data from 401 adult-child caregivers caring for parents with dementia from hospitals in China.Results:Results of the regression analysis revealed that after adjusting for covariates, the regression coefficient between care recipient's BPSD and caregiver burden reduced fromc= 1.01 toc′ = 0.91 when controlling for RFP. Using the bootstrap approach, the estimated indirect effect through RFP between care recipient's BPSD and caregiver burden was 0.11 (95% CI: 0.03, 0.20). The mediation proportion was 11%. The absolute value of the regression coefficient between care recipient's BPSD and caregiver gain reduced fromc= −0.75 toc′ = −0.63 when controlling for RFP. The bootstrapped estimate of the indirect effect through RFP between care recipient's BPSD and caregiver gain was −0.12 (95% CI: −0.18, −0.07). The mediation proportion was 12%.Conclusions:The findings suggest that the effect of care recipient's BPSD on caregiver's burden/gain may be related to the level of RFP among adult-child caregivers in China.
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Opara, Józef, and W. Brola. "Quality of Life and Burden in caregivers of Multiple Sclerosis patients." Physiotherapy and Health Activity 25, no. 1 (March 1, 2018): 9–16. http://dx.doi.org/10.1515/pha-2017-0002.
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Abstract Multiple sclerosis (MS) is one of the most disabling disorders of the central nervous system. Caregivers of individuals with MS may experience unique caregiver strain due to the age at onset and progressive nature of the disease. Additionally, because MS is more prevalent in women, men often become spousal caregivers. This places women in the position of being care recipients rather than caregivers. Some results also supported hypothesis that female caregivers reported a higher need for emotional support than male caregivers. As with female caregivers, decreased emotional support predicted poorer QoL among male caregivers. Caring for a MS patient may negatively impact several objective and subjective aspects of caregiver's life, such as physical and emotional health, morale, work life, finances, social mobility, interpersonal relationships and sexual life. In studies assessing the psychological consequences of care a higher level of anxiety and depression in caregivers than in the general population has been reported. Caregivers who experience burden are more likely to have a higher risk of depression and a lower quality of life. Early recognition of caregiver burden is important in determining appropriate interventions. In this review report the current state of knowledge about the QoL of MS caregivers as well the burden of MS caregivers has been described.
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Williams, Anna-Leila, and Ruth McCorkle. "Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature." Palliative and Supportive Care 9, no. 3 (August 15, 2011): 315–25. http://dx.doi.org/10.1017/s1478951511000265.
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AbstractObjective:Because caregiving to an adult with cancer is a dynamic process, a caregiver's perceived burden and psychosocial concerns may be different at different phases of the patient's disease. There is evidence of escalation in caregiver anxiety, depression, and psychological distress as the patient's functional status declines and as the patient nears death. The purpose of this review was to organize the literature in a meaningful way that can potentially capture the unique needs of caregivers to patients receiving palliative and/or hospice care, and caregivers who are in the post-death bereavement phase.Method:A systematic review was conducted. Major databases were searched for non-intervention descriptive studies that included psychosocial variables of family caregivers to adults with cancer during the palliative, hospice, or bereavement phases.Results:The 19 studies reviewed were conducted in six countries and varied considerably by samples, outcome measures, methodologies, and analytic approaches. Despite limiting to the palliative, hospice, and bereavement phases, inconsistent results were found for key variables, such as age, gender, and relationship to the patient. When patient–caregiver dyad analysis was conducted, with rare exception, there was mutuality between the patient's condition and the caregiver's response. Across the 19 studies, 89 unique instruments were used, almost half of which were study specific with no psychometric testing reported.Conclusions/significance of research:As a direct consequence of assuming the caregiver role, cancer family caregivers in the palliative, hospice, and bereavement phases are at increased risk for physical and mental morbidity. Often, the psychological burden of the caregiver exceeds that of the critically ill patient. It is possible that distressed caregivers have a deleterious influence on patient well-being. This review demonstrates the need to develop research standards, especially regarding measurement instruments, so that caregiver research can mature and interventions can be developed to support family caregivers.
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Alberts, Nicole M., Heather D. Hadjistavropoulos, Nicole E. Pugh, and Shannon L. Jones. "Dementia anxiety among older adult caregivers: an exploratory study of older adult caregivers in Canada." International Psychogeriatrics 23, no. 6 (March 22, 2011): 880–86. http://dx.doi.org/10.1017/s1041610211000299.
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ABSTRACTBackground: Although caring for individuals with dementia is known to result in increased burden and depression among caregivers, little research has investigated caregiver's anxiety or concern about eventually developing dementia themselves (i.e. dementia anxiety). Existing research reports mixed findings regarding variables (e.g. relationship to care recipient, sex, education) that predict dementia anxiety among caregivers and non-caregivers. Potential relationships among burden, depression and dementia anxiety have not been extensively examined. The present study explored caregiver and care recipient factors as predictors of dementia anxiety in older adult caregivers.Methods: A sample of 116 older adult caregivers answered demographic/background questions and completed a series of self-report measures assessing dementia anxiety, caregiver burden, depression, and the physical disability of the care recipient.Results: The majority of caregivers were female, Caucasian, and reported caring for a spouse. Analyses revealed that background variables were generally not related to dementia anxiety, while depression and caregiver burden were significantly associated. Using linear regression analysis, it was found that a diagnosis of dementia in the care recipient and caregiver depression were both significant predictors of caregiver dementia anxiety.Conclusion: Health care providers should be aware that dementia anxiety is associated with caring for individuals with dementia as well as with depression. Dementia anxiety may place additional strain on caregivers of individuals who have dementia and are suffering from depression and thus should be the focus of future research.
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Andruccioli, Jessica, Maria Maffia Russo, Angela Bruschi, Luigi Pedrabissi, Donatella Sarti, Maria Cristina Monterubbianesi, Sabina Rossi, Sabina Rocconi, and William Raffaeli. "Death Representation of Caregivers in Hospice." American Journal of Hospice and Palliative Medicine® 29, no. 7 (January 12, 2012): 531–35. http://dx.doi.org/10.1177/1049909111432623.
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In this study, we investigated caregiver’s death representation in hospice. The results presented here are a further analysis of the data collected in our previous study, concerning the evaluation of the caregiver in hospice. The data analysis of 24 caregivers of patients hospitalized in Rimini Hospice (Italy) underlined that caregivers avoiding death representation of the patient admitted to hospice had fewer protective factors (52.3%) and more risk factors (47.7%) than caregivers nonavoiding (66.5% and 33.5%, respectively). Caregivers avoiding death representation, moreover, experienced a greater distress (58%) than those nonavoiding (42%).
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Bjørge, Heidi, Kari Kvaal, Milada Cvancarova Småstuen, and Ingun Ulstein. "Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study." American Journal of Alzheimer's Disease & Other Dementiasr 32, no. 3 (February 27, 2017): 157–65. http://dx.doi.org/10.1177/1533317517691121.
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This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver’s criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver’s own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver’s perceived relationship with the family member and the caregiver’s distress. The program should also endeavor to give the caretaker more opportunities for leisure time.
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Lerdal, Anners, Caryl L. Gay, Elisabeth Saghaug, Kaare Gautvik, Ellen Karine Grov, Are Normann, Joran Slaaen, Kari Slåtten, Oddveig Utheim Tallang, and Kathryn A. Lee. "Sleep in family caregivers of patients admitted to hospice: A pilot study." Palliative and Supportive Care 12, no. 6 (August 6, 2013): 439–44. http://dx.doi.org/10.1017/s1478951513000357.
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AbstractObjectives:Caring for a dying family member is known to interfere with sleep, yet little is known about caregiver sleep once the patient is admitted to hospice. The aim of this pilot study was to describe the sleep of partners and other family caregivers of patients in hospice.Methods:The pilot study used a cross-sectional, descriptive, and comparative design. Participants included the primary family caregivers of patients recently admitted to a hospice in Norway. Caregiver sleep during the prior month was measured with the Pittsburgh Sleep Quality Index (PSQI). During the patient's hospice stay, caregiver sleep was measured using wrist actigraphy for four nights and three days.Results:Twenty family caregivers (12 partners and 8 other relatives) completed the study protocol without difficulty. On the PSQI, most caregivers (n = 13) reported clinically significant sleep problems during the prior month. Once the patient was admitted to hospice, actigraphy indicated that 10 caregivers had clinically significant sleep disruption (≥15% wake after sleep onset) and six averaged <7 hours of sleep per night. Partner caregivers reported more trouble falling asleep, and less sleep medication use, in the prior month than other types of family caregivers. However, once the patient was admitted to hospice, and after adjusting for caregiver age, partner caregivers experienced less sleep disruption than other caregivers.Significance of results:Findings demonstrate feasibility of the study protocol and indicate that sleep problems are common for caregivers of dying patients, even after the patient is admitted to hospice. The caregiver's relationship to the patient may be an important factor to consider in future studies.
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Jütten, Linda Helena, Ruth Elaine Mark, Ben Wilhelmus Jacobus Maria Janssen, Jan Rietsema, Rose-Marie Dröes, and Margriet Maria Sitskoorn. "Testing the effectivity of the mixed virtual reality training Into D’mentia for informal caregivers of people with dementia: protocol for a longitudinal, quasi-experimental study." BMJ Open 7, no. 8 (August 2017): e015702. http://dx.doi.org/10.1136/bmjopen-2016-015702.
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IntroductionInformal caregivers for people with dementia (hereafter: caregivers) often feel (over)burdened by the care for a loved one with dementia, and this can have various deleterious effects on both caregivers and patients. Support for caregivers is urgently needed, and for this reason, a dementia simulator (Into D’mentia) was developed in which caregivers experience what it is like to have dementia. The simulator attempts to heighten caregivers’ empathy and understanding for the patient and, in turn, diminish their own caregiver burden. The current study evaluates whether the simulator is effective on a number of outcomes.Methods and analysisA longitudinal, quasi-experimental study is ongoing in the Netherlands. We aim to recruit 142 caregivers in total divided over two groups: 71 caregivers in the intervention group and 71 caregivers in the control group. All participants will complete interviews and questionnaires at four time points: at baseline, 1 week, 2.5 months and 15 months after the training. The primary outcomes include empathy, caregiver burden, caregiver’s sense of competence, social reliance, anxiety, depression and caregivers’ subjective and objective health.Ethics and disseminationThis study is being carried out in agreement with the Declaration of Helsinki, and the protocol has been approved by the local ethics committees.Registration detailsThis study is registered with The Netherlands National Trial Register (NNTR5856).
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Selin, Jennifer, Mary Schmitt, and Margaret Hill. "Caregivers' Perceptions of Their Child's Language Disorder: Alignment between Caregivers and Speech–Language Pathologists." Seminars in Speech and Language 39, no. 05 (September 19, 2018): 427–42. http://dx.doi.org/10.1055/s-0038-1670671.
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AbstractCaregivers' perceptions regarding their child's language disorder may influence caregivers' involvement in therapy as well as daily home interactions, thus impacting developmental outcomes. However, little is known about the alignment between caregivers' perceptions of their child's language disorder and those of speech–language pathologists (SLPs), nor of factors that might relate to alignment between caregivers and SLPs. This study addressed three aims: (1) to characterize caregivers' perceptions regarding children's quality of communicative interactions, competence in communicative abilities, and outcomes of communicative improvement; (2) to measure alignment between caregivers' and SLPs' perceptions; and (3) to explore caregiver- and child-level factors that might relate to alignment. Caregivers and SLPs of 3- to 4-year-old children currently receiving treatment for language disorders completed questionnaires to assess perceptions along with two caregiver factors (maternal education and self-efficacy) and child language disorder severity. Caregivers' perceptions were more positive and more variable than those of SLPs. However, caregivers and SLPs agreed in rating perceptions of present and future outcomes higher than either quality or competence. Maternal education, caregiver's self-efficacy, and children's language disorder severity were not related to alignment between caregivers and SLPs. Given the variability in caregivers' perceptions, future research should explore the role of perceptions in children's language intervention outcomes.
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Sawyer, Jean, Colleen Matteson, Hua Ou, and Takahisa Nagase. "The Effects of Parent-Focused Slow Relaxed Speech Intervention on Articulation Rate, Response Time Latency, and Fluency in Preschool Children Who Stutter." Journal of Speech, Language, and Hearing Research 60, no. 4 (April 14, 2017): 794–809. http://dx.doi.org/10.1044/2016_jslhr-s-16-0002.
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Purpose This study investigated the effects of an intervention to reduce caregivers' articulation rates with children who stutter on (a) disfluency, (b) caregiver and child's articulation rates, and (c) caregiver and child's response time latency (RTL). Method Seventeen caregivers and their preschool children who stuttered participated in a group study of treatment outcomes. One speech sample was collected as a baseline, and 2 samples were collected after treatment. Posttreatment samples were of caregivers speaking as they typically would and using reduced articulation rates. Results Caregivers reduced articulation rates significantly in the 2 posttreatment samples, and a significant decrease of stuttering-like disfluencies (SLD) was found in the children in those 2 samples. No direct relationship was found between the caregiver's articulation rate and RTL, and there was a small correlation of RTL with the lower levels of SLD found postintervention. No significant relationships were found between the reduced levels of SLD and articulation rates for either caregivers or children. Conclusions Results suggest caregivers can be trained to slow their speech, and children increased their fluency at the end of a program designed to slow caregiver articulation. The intentionally slower rate of the caregivers, however, was not significantly related to fluency.
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Meriggi, Fausto, Federica Andreis, Veronica Premi, Nadia Liborio, Claudio Codignola, Maria Mazzocchi, Anna Rizzi, et al. "Assessing cancer caregivers' needs for an early targeted psychosocial support project: The experience of the oncology department of the Poliambulanza Foundation." Palliative and Supportive Care 13, no. 4 (June 26, 2014): 865–73. http://dx.doi.org/10.1017/s1478951514000753.
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AbstractObjective:Caregivers play a key role in the management of patients with cancer. However, some studies have suggested that caregivers have even more unmet needs than the patients.Method:To better identify the needs and changes in the lifestyles of the caregivers in our practice and to plan a targeted support project to decrease caregiver burden, we administered the Caregiver's QoL Index–Cancer (CQoLC) to 200 consecutive caregivers. This questionnaire assesses psychological well-being, the relationship with healthcare professionals, administration of finances, lifestyle disruption, and positive adaptation.Results:Our data showed that being a caregiver to a patient with metastatic disease negatively affected females mostly with regard to mental and emotional burden, while men complained more about their sexual life (42.3 vs. 33.6%), although this result was not significant. Some 93.5% of caregivers reported that they were pleased with their role, while 83.4% were concerned about financial difficulties.Significance of results:We strongly believe that early supportive care directed not only at patients but also to caregivers may improve the quality of life (QoL) in this population. We are currently developing a targeted support project to decrease caregiver burden.
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Pooyania, Sepideh, Michelle Lobchuk, Wanda Chernomas, and Ruth Ann Marrie. "Examining the Relationship Between Family Caregivers' Emotional States and Ability to Empathize with Patients with Multiple Sclerosis." International Journal of MS Care 18, no. 3 (May 1, 2016): 122–28. http://dx.doi.org/10.7224/1537-2073.2015-023.
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Background: Multiple sclerosis (MS) is the most common nontraumatic cause of disability affecting young adults in Canada. Caregivers of patients with MS are highly psychologically burdened. Empathy and helping behaviors are hallmarks of quality care, but when they are challenged, suboptimal patient care can result. We aimed to evaluate the prevalence of negative emotional states among primary caregivers of people with MS; the association between the caregiver's empathy-related behavior and the physical and cognitive impairment of the person with MS; and the association between the caregiver's emotional status and his or her empathy-related behaviors. Methods: We conducted a descriptive, cross-sectional pilot study with family caregivers of noninstitutionalized individuals living with MS. We used univariate linear regression models for each potential predictor. The Kruskal-Wallis test was conducted to compare differences in caregiver empathic responses depending on Profile of Mood States subscale scores. Results: Thirty percent of caregivers had elevated or very elevated mood scores, and such elevated scores were associated with greater functional impact of MS on the person with MS. Patient severity of cognitive impairment was not associated with caregiver mood scores. Caregiver mood state was not associated with empathy-related behaviors. Empathy-related behaviors were less frequent when levels of anger and hostility were higher, but this association did not reach statistical significance. Conclusions: Given the elevated levels of fatigue, depression, and anger observed among caregivers in this study, clinicians need to be aware of the potential impact of caregiving and to assess the needs of caregivers.
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Sussman, Joleen, Lauren Moo, and Michele Karel. "Using Video Telehealth to Support Family Caregivers of People With Dementia." Innovation in Aging 4, Supplement_1 (December 1, 2020): 660–61. http://dx.doi.org/10.1093/geroni/igaa057.2282.
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Abstract In 2030, predictions indicate that dementia will affect 75 million people worldwide and increase to 132 million by 2050. Persons’ with dementia (PWD) associated behavioral changes are highly correlated with caregiver burden. Caregivers of PWD commonly report concerns regarding personal and home safety, meaningful activities, advance care planning, and evaluation and diagnosis of dementia of the PWD. Further, caregivers’ emotional response to PWD challenging behavior has greater influence than the actual behavior on decisions to place PWD in a nursing home. Caregiver intervention reduces behavioral and psychological symptoms in the PWD, the caregiver’s emotional distress from these symptoms, and cost to healthcare systems. Yet, one in four dementia caregivers are not receiving dementia support services. Difficulty attending in person clinic-based appointments may be one barrier to caregivers engaging in treatment. This symposium highlights telehealth approaches, by various disciplines (Geriatrician, Neurologist, Geriatric Psychiatric, Geropsychologist, and Occupational Therapist), across urban and rural settings to address caregiver needs and improved access to care. The first presentation will focus on education of rural caregivers of PWD and increased connection to services (Sussman et al). The second presentation will focus on Video to home dementia visits for caregivers (Gately & Moo). The third study will focus on rural tele dementia caregiver support groups and effects on caregiver burden (Rossi et al). The final study will describe co-occurring caregiver and PWD telehealth groups (Thielke & Fredrickson).