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1
Deskins, Barbara Pollard, Susan Letvak, Laurie Kennedy-Malone, Pamela Johnson Rowsey, Leandra Bedini, and Denise Rhew. "The Experiences of African American Male Caregivers." Healthcare 10, no. 2 (January 28, 2022): 252. http://dx.doi.org/10.3390/healthcare10020252.
Abstract:
Aging of the population has led to an increasing number of caregivers. While research has been conducted on caregiver experiences, less is known about the experiences of African American males in the U.S. This qualitative descriptive study describes the experiences of 13 African American men who acted as caregivers to adult chronically ill or debilitated loved ones, the majority of whom provided care during the COVID-19 pandemic. The revised Sociocultural Stress and Coping Model (R-SSCM) guided this study. Individual interviews were conducted via the Zoom application. Content analysis revealed four themes: (1) “My time to take the reins”, (2) “It’s a male thang”, (3) “Caring amid a pandemic”, and (4) “Effects of the caregiver’s journey”. This study’s findings in relation to the literature provide overdue attention to the African American male caregiving experience, especially in relation to the COVID-19 pandemic. The implications of our findings include the need for more culturally congruent support services for African American male caregivers, as well as increased efforts to encourage trust in the healthcare system—especially in relation to vaccination for the SARS-CoV-2 virus.
2
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.
Abstract:
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.
3
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.
Abstract:
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.
4
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.
Abstract:
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.
5
Weinland, Jo Ann. "The Lived Experience of Informal African American Male Caregivers." American Journal of Men's Health 3, no. 1 (November 7, 2007): 16–24. http://dx.doi.org/10.1177/1557988307305916.
Abstract:
Informal caregivers play a major role in providing care to loved ones within the home and demands for dependent care are likely to increase. Informal caregivers are likely to continue to be responsible for the majority of care for loved ones living well into late stages of life. This article describes the lived experience of African American men providing care to a relative within the home and explores their definition of caregiver distress. The phenomenological study was conducted using face-to-face interviews with 10 Christian African American men. Demographic data about the caregiver and the care recipient were collected. Common themes included: commitment, support (family support and formal health-related support), spirituality, and caregiver burden (stress, time strain and financial strain). Implications include the need for health care providers to expand their knowledge related to the diversity of caregivers and to use culturally relevant comprehensive assessments of caregivers and recipients, discharge planning tools, and community resources.
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Smith, Matthew, Chung Lin Kew, Tiffany Washington, Caroline Bergeron, Ashley Merianos, Ledric Sherman, and Kirby Goidel. "CAREGIVER STRAIN AMONG AFRICAN AMERICAN AND HISPANIC MALE CAREGIVERS WITH CHRONIC CONDITIONS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 100. http://dx.doi.org/10.1093/geroni/igac059.398.
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Abstract Caregiving strain often stems from caregivers’ unmet needs and is a risk factor for physical and psychological ill-health. This study aims to identify factors associated with caregiver strain among middle-aged and older African American and Hispanic male caregivers living with one or more chronic conditions. Data were collected from 431 male caregivers using a web-based survey (55% African American, 45% Hispanic). Linear regression models were fitted to assess factors associated with caregiver strain, which was measured using caregiving difficulty items from Behavioral Risk Factor Surveillance System. On average, participants were age 54.9(±9.51) years, they self-reported chronic conditions were 3.74(±2.62), and their caregiver strain was 14.7(±7.30). Among African American caregivers, higher caregiver strain was positively associated with living with children below age 18 (β=0.14, P=0.045) and feelings of social disconnectedness (β=0.16, P=0.018) and depression (β=0.15, P=0.035). Conversely, caregiver strain was negatively associated with having insurance coverage (β=-1.34, P=0.028) and disease self-management efficacy (β=-2.26, P=< 0.001. Among Hispanic caregivers, higher caregiver strain was negatively associated with age (β=-0.28, P=< 0.001) and positively associated with feelings of social disconnectedness (β=0.16, P=0.041). Findings suggest African American and Hispanic males with chronic conditions have differing caregiving experiences. Compared to Hispanic men, contributors to caregiving strain among African American men were multifaceted and associated with financial resources, household dynamics, mental health, and the ability to self-manage their chronic conditions. While bolstering social connectedness may offset caregiver strain, tailored mental health and disease-management programming are needed to meet the specific needs of African American and Hispanic male caregivers.
7
Buchanan, Robert J., Dagmar Radin, and Chunfeng Huang. "Caregiver Burden Among Informal Caregivers Assisting People with Multiple Sclerosis." International Journal of MS Care 13, no. 2 (July 1, 2011): 76–83. http://dx.doi.org/10.7224/1537-2073-13.2.76.
Abstract:
Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The results of this study suggest that treating patient bladder dysfunction and facilitating respite care may reduce burden and improve the mental health of informal caregivers of people with MS. Future research should identify programs and services designed specifically to reduce burden experienced by male caregivers.
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Leung, Lai Ching, Kam Wah Chan, and Kin Yuen Tam. "Reconstruction of Masculine Identities Through Caring Practices: The Experiences of Male Caregivers in Hong Kong." Journal of Family Issues 40, no. 6 (January 7, 2019): 764–84. http://dx.doi.org/10.1177/0192513x18823820.
Abstract:
The purpose of this study was to explore from a gender perspective how masculinities might be reworked into identities of care through men taking on the role of family caregiver. A qualitative method was adopted for this research. Twenty Chinese men in Hong Kong who were the main caregivers in their families were invited for in-depth interviews to understand their views on caring and their experiences as caregivers. We identified four types of male caregiver: (a) conforming caregivers, (b) traditional caregivers, (c) transitional caregivers, and (d) transforming caregivers. Based on our findings, we argue that when men engage in caring, changes can occur in their perceptions of the value of care, their relationships with family members, and their male identities. The involvement of men in caring may lead to social change for men and transform gender relations.
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Silva, Elton Gomes da, Karina Cuziol, Maura Aparecida Viana, and Elizabeth Maria Aparecida Barasnevicius. "Quality of life in patients with Parkinson’s Disease and their caregivers’ stress levels." Revista Neurociências 16, no. 2 (April 30, 1999): 113–17. http://dx.doi.org/10.34024/rnc.2008.v16.8647.
Abstract:
Introduction. The quality of life in patients with Parkinson’s disease (PD) is related to the disease level, which also indicates the caregiver’s quality of life. Methods. This study comprised 43 patients with PD (31 male) and their respective caregivers (35 female) in order to evaluate if these disease symptoms may change their quality of life. Results. There was a statistically significant correlation between quality of life and the disease level and caregiver stress. The higher the score of disease level, the worse the patients and caregivers’ quality of life. Conclusion. The disease control improves the patients’ quality of life and, consequently, the caregivers’ quality of life.
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Molitor, Fred, and Celeste Doerr. "Dietary Behaviors, Diet Quality, and Obesity among Children from Low-Income Households by Gender of Caregiver and Child: Results from the 2018 California Family Health Study." Current Developments in Nutrition 4, Supplement_2 (May 29, 2020): 245. http://dx.doi.org/10.1093/cdn/nzaa043_096.
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Abstract Objectives To examine dietary behaviors, diet quality, and childhood obesity by caregiver and child gender. Methods Permission to interview 2242 children (5–12 y) from randomly-sampled low-income (≤185% of the federal poverty level) households across California was obtained from male or female caregivers screened as the person who “assumes the responsibility in caring for the health and well-being of the child(ren).” A caregiver was further defined as “the male (or female) who prepares the meals or buys food for the child(ren).” Bilingual interviewers administered a 24-hour dietary recall assessment (ASA-24) while referencing a pictorial food and beverage portion-size booklet and measuring cups and spoons. Prior to the interviews, households also received a tape measure with instructions for recording children's height. Height and weight were recorded during the interviews. BMI-for-age weight categories and the corresponding percentiles were calculated. Children at or above the 95th percentile were classified as obese. Outcomes were compared across four caregiver by child gender dyads: daughters of male caregivers; sons of male caregivers; daughters of female caregivers; and sons of male caregivers. Analyses controlled for children's race/ethnicity and age. Results The majority (68.5%) of children participating in the survey were Latino. Adjusted analyses found female caregivers’ sons consumed more teaspoons of added sugar and had higher food-only energy density scores than female caregivers’ daughters. Kilocalories consumed and the obesity rate for female caregivers’ sons were higher than for the other family dyads. Conclusions Unique to the existing literature is our between-family comparisons of children's dietary behaviors by caregiver gender and our findings that female caregivers’ sons are more likely to be obese and report related unhealthful dietary behaviors compared with female caregivers’ daughters. These findings suggest that the focus on female caregivers for nutrition and obesity prevention public health programs such as SNAP-Ed is warranted, but highlight the need to consider the gender of their children when designing and implementing interventions and services aimed a low-income families. Funding Sources California Department of Social Services.
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Handi, Andrew, Dapot Parulian Gultom, Muhammad Surya Husada, Bahagia Loebis, Elmeida Effendy, Mustafa Mahmud Amin, Vita Camellia, and Nazli Mahdinasari Nasution. "The Comparison of Hospital Anxiety and Depression Scale-Anxiety Scores between Female Caregivers of People with Schizophrenia According to Gender Difference." Open Access Macedonian Journal of Medical Sciences 7, no. 16 (August 25, 2019): 2630–33. http://dx.doi.org/10.3889/oamjms.2019.472.
Abstract:
BACKGROUND: Caregiver plays an important role for a better outcome in people with schizophrenia, although it usually causes emotional distress for the caregiver. Anxiety is one of the emotional distress. Gender of schizophrenic patients is associated with the emotional distress of caregiver. The differences in HADS-A scores between female caregivers of people with schizophrenia according to gender in Indonesia remain unclear.
AIM: To determine whether HADS-A scores are higher in a male group compare with the female group.
METHODS: This study was an analytical study with a cross-sectional approach to determine the comparison of HADS-A score between 27 female caregivers of male schizophrenic patients (male group) and 27 female caregivers of female schizophrenic patients (female group) in Prof. Dr M. Ildrem Mental Hospital Medan, using a HADS rating scale.
RESULTS: There is no difference between the male and female group in caregivers: age, marital status, employment status, family income/month, education time, the relationship with people with schizophrenia, caring time, time spent / weeks, and the patients age, employment status, education time, PANSS score and number of relapses. The comparison between total HADS-A score between the male group and the female group is not significant with 9.52 ± 4.90 v 8.70 ± 4.49 (p = 0.53).
CONCLUSION: HADS-A scores are not higher in caregivers of male with schizophrenia compared with caregivers of a female with schizophrenia.
12
Wong, Ting-Hway, Timothy Xin Zhong Tan, Lynette Ma Loo, Wei Chong Chua, Philip Tsau Choong Iau, Arron Seng Hock Ang, Jerry Tiong Thye Goo, et al. "Negative and positive experiences of caregiving among family caregivers of older blunt trauma patients." PLOS ONE 17, no. 10 (October 10, 2022): e0275169. http://dx.doi.org/10.1371/journal.pone.0275169.
Abstract:
Objectives Family caregivers play a fundamental role in the care of the older blunt trauma patient. We aim to identify risk factors for negative and positive experiences of caregiving among family caregivers. Design Prospective, nationwide, multi-center cohort study. Setting and participants 110 family caregivers of Singaporeans aged≥55 admitted for unintentional blunt trauma with an Injury Severity Score (ISS) or New Injury Severity Score (NISS)≥10 were assessed for caregiving-related negative (disturbed schedule and poor health, lack of family support, lack of finances) and positive (esteem) experiences using the modified-Caregiver Reaction Assessment (m-CRA) three months post-injury. Methods The association between caregiver and patient factors, and the four m-CRA domains were evaluated via linear regression. Results Caregivers of retired patients and caregivers of functionally dependent patients (post-injury Barthel score <80) reported a worse experience in terms of disturbed schedule and poor health (β-coefficient 0.42 [95% Confidence Interval 0.10, 0.75], p = .01; 0.77 [0.33, 1.21], p = .001), while male caregivers and caregivers who had more people in the household reported a better experience (-0.39 [-0.73, -0.06], p = .02; -0.16 [-0.25, -0.07], p = .001). Caregivers of male patients, retired patients, and patients living in lower socioeconomic housing were more likely to experience lack of family support (0.28, [0.03, -0.53], p = .03; 0.26, [0.01, 0.52], p = .05; 0.34, [0.05, -0.66], p = .02). In the context of lack of finances, caregivers of male patients and caregivers of functionally dependent patients reported higher financial strain (0.74 [0.31, 1.17], p = .001; 0.84 [0.26, 1.43], p = .01). Finally, caregivers of male patients reported higher caregiver esteem (0.36 [0.15, 0.57], p = .001). Conclusions and implications Negative and positive experiences of caregiving among caregivers of older blunt trauma patients are associated with pre-injury disability and certain patient and caregiver demographics. These factors should be considered when planning the post-discharge support of older blunt trauma patients.
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Matolia, Riddhi R., Khadija Anandwala, and Neha Verma. "A Study to Measure Caregiver Stress in Stroke Patients using Caregiver Strain Index." International Journal of Health Sciences and Research 12, no. 4 (April 19, 2022): 276–82. http://dx.doi.org/10.52403/ijhsr.20220432.
Abstract:
Introduction: Stroke survivors have moderate to severe disability that limits their employment status and social mobility. Family members are usually not prepared to deal with the consequences of a stroke. The care of stroke patients usually leads to stress and burden among the caregivers. Aim: To assess the strain among the caregivers of stroke patients with the Caregiver Strain Index (CSI) and find the correlation between their age and duration of stroke with that of the caregiver strain. Materials and Methods: A cross-sectional study was done at various hospitals in the South Gujarat region. After explaining the purpose and taking the informed consent, 50 participants were included in the study. The interviewer filled a pre-structured proforma for patients and their caregivers, as well as a CSI. Statistical analysis was done using SPSS 15. Results: The mean age of participants and caregivers were 60.06 ± 15.43 years and 49 ± 15.07 years, respectively. Male stroke survivors were 60% among the sample of 50. Caregiver’s strain was found to be high in 84% (n=42) and low in 16%(n=8) of the caregivers of stroke patients. A positive correlation was present between the patient’s age and CSI score (r=0.132) and a negative correlation between the duration of stroke and CSI score (r=-0.069) with spearman correlation. Conclusion: Among the caregivers of stroke patients, the strain was found to be high. Also, with the increasing age of stroke patients, the level of stress on caregivers increases. As the duration of stroke increases, the caregiver strain reduces. Key words: Caregiver stress, Mental health, Emotional stress, Stroke survivors, Caregiver Strain Index.
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Wilkes, Chelsey M., Karla T. Washington, William M. Palmer, Debra Parker Oliver, George Demiris, and Kevin Craig. "Differential effects of patient symptom subtypes on informal hospice caregiver depression." Palliative and Supportive Care 16, no. 2 (January 31, 2017): 127–36. http://dx.doi.org/10.1017/s1478951516001152.
Abstract:
ABSTRACTObjective:Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not.Method:Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale–Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire–9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation.Results:Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample.Significance of results:Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.
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Lopez–Anuarbe, Monika, and Priya Kohli. "Understanding Male Caregivers’ Emotional, Financial, and Physical Burden in the United States." Healthcare 7, no. 2 (May 22, 2019): 72. http://dx.doi.org/10.3390/healthcare7020072.
Abstract:
Men caregivers face caregiving burden, have weak support networks and are less likely to seek out programs which increase their caregiving capabilities and help them cope with this burden. Using the 2011 and 2015 National Study of Caregiving (NSOC) database and hierarchical regressions, we studied the emotional, financial, and physical burden of male caregivers as spouses, sons, and other caregivers by assessing the impact of caregiver characteristics, tasks and resources for each subgroup. We highlighted the importance of using a nationally representative database for men caregivers only and emphasized that these caregivers are not a monolithic group. We found that all caregivers experienced these three burden types, particularly elevated emotional stress, with sons reporting the highest emotional and financial strain levels. Assisting with personal care was the most stressful task and caregivers vastly under-utilized support and training. Our results suggest that burden suppressants included having family and friends help with caregiving, having time to decompress, and feeling appreciated by the care recipient. These findings offer insight for devising future policies that intentionally include relationship and burden type to encourage improved and more caregiving from men while supporting their well-being.
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Swinkels, Joukje C., Marjolein I. Broese van Groenou, Alice de Boer, and Theo G. van Tilburg. "Male and Female Partner-Caregivers’ Burden: Does It Get Worse Over Time?" Gerontologist 59, no. 6 (October 12, 2018): 1103–11. http://dx.doi.org/10.1093/geront/gny132.
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Abstract Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlin’s Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time. Research Design and Methods We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregivers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregivers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care.
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Bjørge, Heidi, Kari Kvaal, and Ingun Ulstein. "309 - Quality of life in caregiver in a gender perspective." International Psychogeriatrics 32, S1 (October 2020): 67. http://dx.doi.org/10.1017/s1041610220002094.
Abstract:
Background and aimPeople with dementia depend on a relative to be able to stay at home longer However, being a caregiver has shown to influence on their quality of life (QoL). Depression is the most common factor associated with low caregiver QoL, while relational factors have shown to be a protective factor. Less is known about how female and male caregivers approve to the caregiving demands, and thus how these demands influence their QoL. In this study, we aimed at investigating what factors influenced on QoL related to gender and how these fluctuated with time.MethodIn this longitudinal design, a total of 208 caregivers, 158 female mean age 62.5 and 50 male caregivers, mean age 67.9 were assessed for Quality of Life-Alzheimer Disease (QoL). In addition, depression, family relationship and caregivers’ burden of care were assessed. Linear regression analyses were applied to explore the bivariate and multivariate associations between the dependent variable QoL and potential explanatory variables.The same questionnaires were completed at one-year follow-up, and the results from the remaining 176 caregivers were compared with their baseline scorings.ResultsCaregivers’ depressive feelings were the strongest predictors of caregivers’ QoL. What differed in the explained perceived QoL was feeling of social isolation in female caregivers, and male caregivers’ perception of their care receivers’ emotionally overinvolved attitude towards them. Additionally, female caregivers expressed a higher burden and cared for a relative more affected by their dementia. After one year, their QoL declined, more for male than female, while their level of depressive feelings, distress and level of EOI remained unchanged.ConclusionThe study revealed that except for depressive feelings, female and male caregivers faced their caring experience, differently. The implication of these findings is that gender must be considered when planning for interventions. While female caregivers might need more time for leisure activities, male caregivers need ways to deal with their emotional relationship with their care receivers. Treatment of their depressive feelings seems to be crucial. They would also need approaches specifically targeting the different stages as dementia develop.
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Robinson, Carole A., Joan L. Bottorff, Barbara Pesut, John L. Oliffe, and Jamie Tomlinson. "The Male Face of Caregiving." American Journal of Men's Health 8, no. 5 (January 9, 2014): 409–26. http://dx.doi.org/10.1177/1557988313519671.
Abstract:
The purpose of this scoping review was to examine the empirical evidence published since 2007 on men as family caregivers of persons with dementia. Searches were conducted on Academic Search Complete, Ageline, CINAHL, Embase, Medline, PsychINFO, Social Work Abstracts, and Web of Science using database-specific controlled (i.e., MeSH terms) vocabulary related to dementia, men, and caregiving. Studies published in English between 2007 and 2012 that provided evidence of the experiences of male family caregivers of persons with dementia were included in the review. A total of 30 articles were selected for inclusion. Studies were grouped into three major themes for review: men’s experiences of caregiving, relational factors, and outcomes of caregiving. The reviewed studies build on and support previous findings related to stress, burden, accessing services, and the importance of relational factors to men’s caregiving experiences. However, there is a need for a framework that explains these findings in relation to masculinities. Such a framework would provide the necessary unifying context for a more powerful explanatory account. Furthermore, there appears to be the potential for great benefit in fully linking men’s caregiver research to men’s health issues as a means to articulate strategies to sustain the health and well-being of men caregivers. This seems especially relevant in light of the closing gender gap in life expectancy, which will ultimately see many men providing direct care to their partners.
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Faqi-Rahid, Farida, and Shukir Hasan. "Caregiver’s Knowledge regarding Homecare Management of Spastic Cerebral Palsy Children Under 12 Years Old in Rapareen Province." Erbil Journal of Nursing and Midwifery 5, no. 2 (November 30, 2022): 61–71. http://dx.doi.org/10.15218/ejnm.2022.07.
Abstract:
Background and objectives: Spasticity, sometimes called hypertonia, makes movement difficult or even impossible. Spastic children with Cerebral Palsy face many health problems that need significant attention at home. This study aimed to assess caregivers’ knowledge about home care management of spastic CP children in the Rapareen Region. Methods: A quantitative, descriptive cross-sectional study was carried out in the Rapareen Region of Sulaimani city. The period started from October 1st, 2020, to October 1st, 2021. Purposive (non-probability) sampling techniques of 115 caregivers, who attend rehabilitation centers in Ranya, Chwarqwrne, and Qaladeze in Rapareen province, were respectively recruited to the study. The investigators prepared a ques-tionnaire format after reviewing related literature. Direct interview (face to face) and a home visit was conducted to collect the data. Descriptive statistics SPSS version 25 was used, and statistics of frequencies, percentages, and inferential statistical analysis of Chi-square test and regression were used. Results: The vast majority (98.3%) of the primary caregivers were mothers of spastic CP children. Almost all (94.8) of the caregivers were married. The majority (88.7%) of caregivers were housewives. Less than half (48.7%) of the sample were between 31 to 40 years. More than three quarter (67%) of the sample were male children and more than half (65.2%) were School-age children with Spastic Cerebral Palsy. There was a statistically highly significant association between formal years of education and residency area of caregiver with the caregiver’s knowledge at a p-value of 0.020 and 0.003 respectively. Factors significantly associated with caregivers’ knowledge of homecare of spastic CP children include the level of education of caregiver, age of caregiver, and height of spastic Cerebral Palsy children. Conclusion: The findings of the present study showed that level of education, age of caregiver, and residency areas are associated with caregiver’s knowledge regarding homecare of spastic Cerebral Palsy children. Mothers are required educational programs to boost knowledge regarding homecare management of spastic CP children.
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Warapornmongkholkul, Anchalee, Nopporn Howteerakul, Nawarat Suwannapong, and Nopadol Soparattanapaisarn. "Self-efficacy, social support, and quality of life among primary family-member caregivers of patients with cancer in Thailand." Journal of Health Research 32, no. 2 (March 12, 2018): 111–22. http://dx.doi.org/10.1108/jhr-01-2018-012.
Abstract:
Purpose In Thailand, most patients with cancer primarily receive in-home care from their family members. However, information regarding the quality of life (QoL) of the primary family-member caregivers is scarce. The purpose of this paper is to assess primary family-member caregivers’ QoL and its association with self-efficacy and social support using a Thai version of the Caregiver Quality of Life Index-Cancer (CQOLC). Design/methodology/approach This hospital-based cross-sectional study was performed at a teaching hospital in Bangkok. Questionnaires were administered to 178 primary family-member caregivers of patients with cancer between June 2015 and July 2016, and their QoL was measured using a Thai translation of the CQOLC made by the research team. Hierarchical multiple regression analyses were performed using SPSS software (version 18). Findings Approximately 79.8 percent of primary family-member caregivers were female, 86.0 percent were 18-51 years old. In total, 52.8 percent reported having a good QoL, 60.1 percent reported a moderate level of perceived self-efficacy, and 56.7 percent reported a high level of perceived social support for providing care. Primary family-member caregivers, who provided care for male cancer patients and were co-responsible for covering the patient’s cost of care, had a lower level of perceived self-efficacy and perceived social support. They also reported having poorer QoL. The patients’ characteristics were more strongly associated with the family-member caregivers’ QoL, than the family-member caregivers’ characteristics, perceived self-efficacy, and perceived social support. Originality/value Approximately 50 percent of primary family-member caregivers reported having a good QoL. Healthcare providers should incorporate the self-efficacy concept to help improve primary family caregiver’s self-efficacy to provide care to patients with cancer, especially for individuals who are caring for male patients, and provide counseling for primary family-member caregivers regarding ways to obtain the necessary social and financial support to improve their QoL.
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Bozkurt Zincir, Selma, Murat Sunbul, Serkan Zincir, Esra Aydin Sunbul, Mustafa Oguz, Fatma Feriha Cengiz, Erdal Durmus, Tarik Kivrak, and Ibrahim Sari. "Burden and Depressive Symptoms Associated with Adult-Child Caregiving for Individuals with Heart Failure." Scientific World Journal 2014 (2014): 1–6. http://dx.doi.org/10.1155/2014/641817.
Abstract:
Background. The primary purpose of this study was to investigate adult-child caregiver burden in heart failure (HF) patients. Secondary purpose of the study was to identify the possible influencing factors for caregiver burden and depressive symptoms in a young adult-child caregiver group.Methods. A total of 138 adult-child caregivers and 138 patients with HF participated in this study. Caregivers’ burden, depressive symptoms, and anxiety levels were assessed by using Zarit Caregiver Burden Scale (ZCBS), Beck Depression Inventory, and State-Trait Anxiety Inventory, respectively.Results. The mean ZCBS scores of the female caregivers were significantly higher than male caregivers. Approximately one-third of the adult-child caregivers had at least mild depressive symptoms. Caregivers with higher depressive symptoms had higher levels of caregiver burden. There were positive correlations between caregiving time, severity of depressive symptoms, and perceived caregiver burden. There was a negative correlation between education level of caregivers and perceived caregiver burden. Age, socioeconomic level, and marital status of patients were affecting factors for depressive symptoms in caregivers. Among caregiver characteristics, gender, marital status, and ZCBS scores seem to influence the depression in caregivers.Conclusions. The study findings suggest significant levels of burden and depressive symptoms even in adult-child caregivers of HF patients.
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Esezobor, Christopher I., Adaobi U. Solarin, and Andrew T. Olagunju. "Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study." Canadian Journal of Kidney Health and Disease 7 (January 2020): 205435811989801. http://dx.doi.org/10.1177/2054358119898016.
Abstract:
Background: Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little is known about the psychosocial burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses. Objectives: To determine the frequency and predictors of significant caregiver burden and psychological distress among caregivers of children with NS. Design: A cross-sectional study. Setting: Two pediatric nephrology clinics in Lagos, Nigeria. Patients: We included primary caregivers of children with idiopathic NS for at least 6 months. Measurements: The primary outcomes were psychological distress and significant caregiver burden among caregivers. Methods: We interviewed caregivers using the 12-item General Health Questionnaire (GHQ-12) and the 6-item Zarit Burden Interview (ZBI-6). The GHQ-12 scores ≥ 3 and ZBI-6 scores ≥ 6 indicated psychological distress and significant caregiver burden, respectively. Results: The caregivers were mostly mothers (77.9%) and married (92.4%), whereas the children (n = 172) were mainly male (65.1%). Most of the children (n = 152; 88.4%) had steroid-sensitive NS including 24 (14%) children with frequent relapses or steroid dependence and 20 (11.6%) with steroid-resistant NS. Of the 172 caregivers, 53 (30.8%) and 30 (17.4%) reported psychological distress and significant burden, respectively. Caregivers of children in relapse had adjusted an odds ratio (aOR) with 95% confidence interval (CI) of 2.45 (1.05-5.67) and 3.30 (1.22-8.92) of psychological distress and significant caregiver burden, respectively. Furthermore, caregivers of male children and those who needed help paying for health care had an aOR of 4.61 (1.34-15.68) and 3.06 (1.06-8.87) of significant caregiver burden, respectively. Limitations: The study was limited by its cross-sectional design and the use of generic rather than disease-specific instruments. Conclusion: One in every 6 caregivers of children with idiopathic NS reported significant caregiver burden, and it was associated with psychological distress. Our findings underscore the need for psychosocial support for caregivers of children with NS, especially those with identifiable vulnerability.
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Kenning, Heather, Yunjia Yang, Lisa O'Neill, Mindy Fain, Mark Wager, and Amanda Sokan. "Caregiver Challenges of Older University Employees During the COVID-19 Pandemic." Innovation in Aging 5, Supplement_1 (December 1, 2021): 65. http://dx.doi.org/10.1093/geroni/igab046.250.
Abstract:
Abstract The COVID-19 pandemic has created numerous challenges for older employees who are also caregivers. Some challenges are associated with disruptions in community-based support services leading to the intensification of caregiver responsibilities. Other challenges are related to caregivers’ concerns about their health or the risk of bringing the virus to the care recipient. This study investigated the impacts of those challenges on older (age 55+) working caregivers, from a major university, with a sample that included 57 male and 80 female caregivers. The investigation explored the association of gender and perception of COVID risk, vulnerability, loneliness, resilience, and interpersonal change. Although literature suggests that female caregivers report more risk-perception, stress, and overburden than male caregivers, our findings showed no significant differences based on gender. These findings suggest the importance of understanding that both male and female older working caregivers have been affected by stress and overburden due to the recent pandemic.
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Accius, J. "BREAKING STEREOTYPES: MALE FAMILY CAREGIVERS." Innovation in Aging 2, suppl_1 (November 1, 2018): 240. http://dx.doi.org/10.1093/geroni/igy023.894.
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Geiger, Jennifer R., Scott E. Wilks, Lauren L. Lovelace, Zibei Chen, and Christina A. Spivey. "Burden Among Male Alzheimer’s Caregivers." American Journal of Alzheimer's Disease & Other Dementiasr 30, no. 3 (September 28, 2014): 238–46. http://dx.doi.org/10.1177/1533317514552666.
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Au, Trang H., Hillevi Bauer, Jyothi Menon, Connor Willis, Eli Iacob, Junjie Ma, Alexandre Watanabe, et al. "Impact of glioblastoma (GBM)-related cognitive dysfunction (CD) on caregiver burden: Preliminary results from multi-site study in the U.S." Journal of Clinical Oncology 36, no. 34_suppl (December 1, 2018): 16. http://dx.doi.org/10.1200/jco.2018.36.34_suppl.16.
Abstract:
16 Background: GBM is a largely incurable, highly aggressive cancer with high incidence of CD. Caregivers face heightened stress with loved one’s limited life expectancy and additional duties. To better understand this unique group, a survey tool was developed to examine effect of CD on caregiver burden. Methods: Four of 10 planned academic centers are enrolling towards achieving 200+ completed surveys. The survey was developed step-wise: 1) literature review of primary brain tumors, Alzheimer’s disease, and dementia to identify domains; 2) focus groups with neurooncologists and American Brain Tumor Association advocates to narrow domains; 3) caregiver interviews to verify selected domains; 4) single-site pilot study to confirm content (n=20). Dyads with caregiver survey and respective patient’s clinical data are created as possible. Results: Complete data from 31 caregivers and 28 dyads enrolled at Huntsman Cancer Institute, University of Utah and University of California, Los Angeles are currently available. Response rate was 88% for caregivers and 90% for patients. Among caregivers, 87% were patient spouse/partner, 84% female, average age 56 years, 42% currently employed, 32% have no additional help, and 26% are primary caregivers for others. Patients were male (74%), average age 59 years, not working (84%), and being treated for initial diagnosis (67%). Proportion of caregivers performing ≥ 1 caregiving task, i.e. meal preparation, doubled from before to after diagnosis (48% vs. 97%). The majority of caregivers (90%) perceived memory problems in a loved one over last 14 days. Trouble remembering recent events or things interfered with 71% of caregivers’ daily life "somewhat", "quite a bit", or "very much". When ranking effect of CD on caregiver’s general quality of life on a scale of 0 (none) to 10 (significant), 60% and 23% of caregivers indicated ≥ 5 and ≥ 8, respectively. Caregivers’ responses to survey satisfaction questions showed only 23% feel enough is being done to understand caregiving in GBM and 76% were satisfied overall with the survey. Conclusions: Caregivers are affected daily and significantly by GBM-related CD. Results will be updated at time of presentation.
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Tolea, Magdalena, Iris Cohen, Simone Camacho, and James Galvin. "MINDFULNESS AND CAREGIVING EXPERIENCE IN ADRD CAREGIVERS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 454–55. http://dx.doi.org/10.1093/geroni/igac059.1772.
Abstract:
Abstract Mindfulness (being present in the moment without judgement) has been linked to greater caregiver emotional health. Recent mindfulness-based interventions report improved coping skills, mood, and reduced stress in dementia caregivers. In this cross-sectional study of 141 ADRD caregivers, we assessed whether the relationship between caregiver mindfulness and caregiver experience varies by caregiver gender, relationship to patient (spouse-vs-child), etiology (AD-vs-LBD), or stage (MCI-vs-dementia). A stratified univariate analytic approach was used. Four mindfulness parameters (AMPS scale) were used: global score (GS), decentering (F1), positive (F2), and negative emotional regulation (F3). Outcomes included positive and negative appraisals of caregiving (PANAC), preparedness, care confidence, and depression. GS was linked to positive outcomes in male (rPANAC+=0.32/p=0.005), spouse caregivers (rPANAC+)=0.32/p=0.006 ) of ADRD patients regardless of etiology (rPANAC+=0.31/p=0.013 for AD; rconfidence=0.31/p=0.036 for LBD) and stage (rPANAC+=0.33/p=0.010 and rpreparedness=0.38,/p=0.008 for MCI; rPANAC+=0.29/p=0.011 and rconfidence=0.31/p=0.007 for dementia). Inverse relationships were observed with negative outcomes in male (rPANAC-=-0.46/p=0.002 and rdepression=-0.41/p=0.005), spouse caregivers (rPANAC-=-0.25/p=0.035 and rdepression=-0.30/p=0.009) of AD patients (rPANAC-=-0.25/p=0.043 and rdepression=-0.33/p=0.009) in early stages (rdepression=-0.41/p=0.001). F2 contributed to most relationships, with F3 and F1 significant in some but not all caregiver groups. Specifically, male spouse caregivers of AD patients regardless of stage may benefit from full-scope (F1-F3) programs while those of LBD patients from programs focused on improving emotional regulation (F2-F3). Wives of AD and LBD patients may in turn benefit from programs to improve positive emotional regulation (F2). Findings suggest that tailoring mindfulness-based interventions to specific caregiver groups may be effective in improving caregiver experience and mood.
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Vrettos, Ioannis, Konstantinos Kamposioras, Nick Kontodimopoulos, Evelina Pappa, Elissavet Georgiadou, Dionysios Haritos, Angelos A. Papadopoulos, and Dimitris Niakas. "Comparing Health-Related Quality of Life of Cancer Patients under Chemotherapy and of Their Caregivers." Scientific World Journal 2012 (2012): 1–9. http://dx.doi.org/10.1100/2012/135283.
Abstract:
Introduction. Cancer is a major disorder physically and psychologically affecting both patients and their caregivers. In this study, health-related quality of life (HRQoL) of patient-caregiver dyads during the period of chemotherapy was assessed.Material and Methods. Two hundred twenty-two cancer patient-caregiver dyads were enrolled in the study, which was conducted from October 2008 to March 2009. HRQoL was evaluated with EQ-5D.Results. The mean age of the sample was 57.4 and 48.9 for patients and caregivers, respectively. The EQ-5D descriptive system indicates that female patients more frequently experience anxiety and depression than male patients. Male and higher-education caregivers had higher VAS scores, while demographic factors did not seem to influence patients’ HRQoL. Anxiety and depression of caregivers were correlated with patients’ problems in self-care and usual activities.Conclusions. Quality of life is highly influenced during the period of chemotherapy for both patients and caregivers and is often under reported. Interventions that can improve HRQoL, especially in the domain of mental health for both cancer patients and their caregivers, need to be implemented.
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Kochhann, Renata, Ericksen Borba, Maria Otília Cerveira, Diego Onyszko, Alyne de Jesus, Letícia Forster, Luisa Franciscatto, Cláudia Godinho, Ana Luiza Camozzato, and Márcia Lorena F. Chaves. "Neuropsychiatric symptoms as the main determinant of caregiver burden in Alzheimer's disease." Dementia & Neuropsychologia 5, no. 3 (September 2011): 203–8. http://dx.doi.org/10.1590/s1980-57642011dn05030008.
Abstract:
Abstract Caregiver burden is common in Alzheimer's disease (AD), decreasing the quality of life among caregivers and patients. Projections of aging and aging-related diseases such as AD in developing countries justify additional data about this issue because people living in these countries have shown similarly high levels of caregiver strain as in the developed world. Objective: The aim of this study was to analyze the association of AD caregivers' burden with patients' neuropsychiatric symptoms (NPS), cognitive status, severity of dementia, functional capacity, caregiver sociodemographic characteristics, and the characteristics of care provided by caregivers. Methods: A cross-sectional study was conducted in a sample of 39 consecutive AD patients and their primary caregivers. NPS were evaluated using the Neuropsychiatric Inventory (NPI). Severity of dementia was assessed with the Clinical Dementia Rating (CDR) scale. Functional capacity was assessed using the Katz and Lawton scales. The burden level was rated using the Burden Interview (BI). Sociodemographic characteristics of caregivers and the characteristics of care provided by them were evaluated. The Mann-Whitney U-test, Kruskal-Wallis test and Spearman's rho coefficient were performed. Results: The BI had a moderate correlation with NPI intensity (rho=0.563), p<001. Female caregivers reported a greater level of burden (p=0.031) than male caregivers. The other variables were not significantly associated to caregiver burden. Conclusion: NPS were the main determinant of burden in primary caregivers of AD patients. This result underscores the need for prevention and treatment of these symptoms. Sex also had an effect on caregiver burden, but the small male sample in this study precludes the generalization of this finding.
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Fu, Wenhao, and Jiajia Li. "Explaining Gender Differences in Depressive Symptoms Among Caregivers of Older Patients With Critical Illness." Innovation in Aging 5, Supplement_1 (December 1, 2021): 379. http://dx.doi.org/10.1093/geroni/igab046.1471.
Abstract:
Abstract The aging of baby boomers makes caring for the elderly an increasingly important topic. As rising cost of health care, the care for seriously ill patients has gradually shifted from hospitals to families, particularly in the countryside. Along with growing demand for informal care, informal caregivers are at increased risk of depression. The aim of this study was to explore the potential protective factors or risk factors associated with depressive symptoms of caregivers for patients with critical illness (45 to 93 years of age) across gender groups, explain their different pathways of influence, and elucidate targeted measures to improve their outcomes (N=518). Results from the statistical model showed that the paths of effect from care needs to caregiver depressive symptoms differed between male and female informal caregivers. Care needs were not significantly associated with depression symptoms among informal caregivers, for either men or women. Care hours of more than 12 hours per day and financial difficulties at home are risk factors for depressive symptoms in caregivers, with significance of OR=3.42; 95%CI,1.97 to 5.94; P=0.000 and OR=2.98; 95%CI, 1.46 to 6.05; p=0.003, respectively. For male caregivers, years of caregiver education and the feel relied upon by relative's were both protective factors, whereas Job-Caregiving conflict, was a risk factor (P<0.05). For female caregivers, caregiver burden and higher caregiver age were its risk factors (P<0.05). These important findings demonstrate that to be effective in reducing depressive symptoms among informal caregivers, both cointerventions and triage interventions by gender are warranted.
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Hendricks-Lalla, Abeedah, and Chrisma Pretorius. "The male familial caregiver experience of caring for persons with Alzheimer’s disease from low socio-economic status: A South African perspective." Dementia 19, no. 3 (June 18, 2018): 618–39. http://dx.doi.org/10.1177/1471301218781372.
Abstract:
The aim of this study was to explore the experiences of male familial caregivers of persons with Alzheimer’s disease from low socio-economic status using the ecological systems theory perspective. The data were obtained from 11 semi-structured interviews that were conducted with the familial caregivers of persons with Alzheimer’s disease. Data were analyzed using thematic analysis, where four main themes emerged, namely, relationship difficulties, understanding Alzheimer’s disease, support networks, and finding meaning and satisfaction in the caregiving role. Behavioral problems, erosion of the relationship with the significant other, familial conflict, experience of diagnosis, lack of information, lack of free time, and financial concerns were identified challenges facing caregivers. Provision of information, support groups, social support, community-based support, and finding meaning and satisfaction in the caregiving role were reported as resources that assist in caregiver coping. Men seem to be capable of providing effective care and are able to successfully manage in their caregiving role. Culture seems to play a significant role in help-seeking behavior and the approach to caregiving. The findings provide the basis for the specific needs of male caregivers that should be focused on in order to provide culturally appropriate services to enhance caregiver coping amongst male caregivers in similar settings.
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Schaffler-Schaden, Dagmar, Simon Krutter, Alexander Seymer, Roland Eßl-Maurer, Maria Flamm, and Jürgen Osterbrink. "Caring for a Relative with Dementia: Determinants and Gender Differences of Caregiver Burden in the Rural Setting." Brain Sciences 11, no. 11 (November 15, 2021): 1511. http://dx.doi.org/10.3390/brainsci11111511.
Abstract:
Dementia is a progressive disease that puts substantial strain on caregivers. Many persons with dementia (PwDs) receive care from a relative. Since male and female caregivers experience different issues related to stress, it is important to meet their different needs to prevent the early nursing home placement of PwDs. This study investigated the multifactorial aspects of caregiver burden and explored gender differences in caregiver burden in a rural setting. This was a cross sectional study that administered anonymous questionnaires to family caregivers of PwDs. Caregiver burden was assessed using the Burden Scale for Family Caregivers—short version. A path model was used to determine the multivariate associations between the variables. To reflect the multifaceted aspects of caregiver burden, we used Pearlin’s model with its four dimensions. A total of 113 family caregivers responded to our survey. The overall burden of caregivers was moderate. According to the path model, gender differences were predictors of caregiver burden. The behaviour of the person with dementia and cohabitation had direct effects on caregiver burden. Our results suggest that the experiences of men and women caring for a PwD are different and highlight the need for tailored support in dementia care.
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Raymond, Martha, and Margaret-Ann Simonetta. "The caregiver perspective: Advancing the understanding of cancer caregiving in the palliative care setting." Journal of Clinical Oncology 36, no. 34_suppl (December 1, 2018): 17. http://dx.doi.org/10.1200/jco.2018.36.34_suppl.17.
Abstract:
17 Background: 2018 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Throughout the care continuum, cancer caregivers provide invaluable support which greatly impacts and improves patient quality of life. In the palliative care setting caregiver support is vitally important, but many caregivers struggle to take care of their own needs and are not aware of supportive services. Our study explores the unmet needs of cancer caregivers in the palliative care setting. Methods: Over a two-year time period (2015-2017), our professional facilitator met with cancer caregivers in 32 states hosting nationwide focus groups. Primary goals were reaching caregivers in rural, urban, medically underserved, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated. 92% of caregivers did not feel comfortable defining palliative care nor did they realize the various supportive elements palliative care provides. 76% were extremely anxious during care transitions; 71% feel overwhelmed with daily caregiving tasks; 69% want to help make end of life decisions including advance directives in partnership with their loved one, but did not feel equipped to make tough decisions; 64% report lack of patient/caregiver centered communication with their healthcare team, including guidance on adverse effects and training for medical hands-on tasks. Conclusions: Caregivers in the palliative care setting need additional supportive services, effective interventions, and educational programs to meet their unmet needs. With additional support and awareness, enhanced quality of life for both caregiver and patient is possible. Our conversations with caregivers will continue as we increase palliative care awareness, collaborate with partners, develop meaningful programs, and expand our outreach to help meet the needs of caregivers in the palliative care setting.
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Prado, Lia, Rebecca Hadley, and Dawn Rose. "Taking Time: A Mixed Methods Study of Parkinson’s Disease Caregiver Participation in Activities in Relation to Their Wellbeing." Parkinson's Disease 2020 (April 9, 2020): 1–18. http://dx.doi.org/10.1155/2020/7370810.
Abstract:
Objectives. Although many studies have shown that psychosocial interventions, such as dance classes, can improve quality of life for people with Parkinson’s disease (PD): few have addressed the role of, and potential benefits to, the caregivers in such activities. This mixed methods study explored the reasons for caregiver participation in a variety of activities and considered whether participation in, or abstention from these, affected the wellbeing of the caregivers. Method. Transcriptions of a focus group (two people with PD, two caregivers) and eight semistructured interviews (caregivers) were analysed using Grounded Theory (GT). To test the hypotheses derived from the GT, caregivers (n = 75) completed an online survey about activities they and the person they care for participated in, alongside the PDQ-Carer questionnaire, to establish the caregiver’s levels of wellbeing. Results. Qualitative findings suggested that caregivers tried to find a balance between caring for the person with PD and participating in activities to attend to their own needs. Reasons for participating in activities for people with PD included being able to socialise in an empathetic safe space, alongside engaging in physical activity that provided some respite distraction, such as dancing with others to music. Reasons for not participating included generating time for oneself and increasing the independence of the person with PD. Quantitative results suggested that most of the participants’ wellbeing was not compromised, although this was gendered: female caregivers reported lower wellbeing scores than male caregivers. Overall, 62% of caregivers participated in joint activities. Linear regression revealed a significant relationship between nonparticipation in daily activities and stress levels for female caregivers only, whereby the more independent the person with PD was, the lower the stress of the caregiver. Conclusion. This study suggests that caregivers of people with PD can find a healthy balance in terms of their own wellbeing by jointly participating in two-thirds of activities while ensuring the remaining third is time reserved for themselves.
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Fulton Picot, Sandra J., JoAnne Youngblut, and Richard Zeller. "Development and Testing of a Measure of Perceived Caregiver Rewards in Adults." Journal of Nursing Measurement 5, no. 1 (January 1997): 33–52. http://dx.doi.org/10.1891/1061-3749.5.1.33.
Abstract:
Assessment of the rewards of caregiving is pertinent to a holistic view of the caregiving experience and design of health promotion interventions for caregivers. Few measures of caregiver positive appraisals exist. This paper describes the development and pilot testing of the Picot Caregiver Rewards Scale (PCRS) for adult caregivers. Derived from the choice and social exchange theory, caregiver interviews, and literature, 25 items compose the scale. Psychometric testings of the PCRS were conducted in a nonrandom sample of 83 Black female caregivers and a random sample of 256 Black and White female and male caregivers. Alphas of .83 and .88 demonstrated acceptable internal consistency of the revised 16-item PCRS. Construct validity was demonstrated by support of hypothesized relationships with caregiving demands, palliative coping, depression, and caregiver burden, as well as confirmatory factor analysis. Further psychometric study of the PCRS is recommended.
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Jabłoński, Marcin J., Francisco García-Torres, Paulina Zielińska, Alicja Bułat, and Piotr Brandys. "Emotional Burden and Perceived Social Support in Male Partners of Women with Cancer." International Journal of Environmental Research and Public Health 17, no. 12 (June 12, 2020): 4188. http://dx.doi.org/10.3390/ijerph17124188.
Abstract:
Background: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis. Methods: A cross-sectional, longitudinal and observational study was conducted on a group of 61 couples, with the use of Zarit Burden Interview (ZBI), Caregiver Burden Scale (CBS), Berlín Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). Statistical analysis was performed using Statistica v.13. Results: A strong positive correlation between the ZBI and CBS, as well as between support-seeking and the emotional involvement of male partners, was documented. The negative correlation between the lack of instrumental support and a much greater burden on caregivers, in emotional, social, and family life was documented. The level of distress, anxiety, and depression, as well as family problems reported by female patients, were positively correlated with the male caregiver′s burden. A demographic analysis showed significant relationships between the number of offspring and the negative health indicators of patients and their partners. Implications: The obtained results encourage deeper reflection on the need to improve the availability of instrumental support for male caregivers and support for families with an oncological ill parent in caring for minor children, and to maintain the social activity of the caregiver.
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Bueno, Michael, and Jo-Ana Chase. "A DUTY TO CARE: MALE PERSPECTIVES ON THE CAREGIVER ROLE FOR PERSONS WITH ALZHEIMER’S OR RELATED DEMENTIA." Innovation in Aging 6, Supplement_1 (November 1, 2022): 100. http://dx.doi.org/10.1093/geroni/igac059.397.
Abstract:
Abstract The population of family caregivers (FCGs) of persons with Alzheimer's Disease and related Dementias (ADRD) is growing, as is the proportion of males taking on this traditionally female role. Most caregiving research has mainly focused on females. Although female caregivers have reported more negative outcomes, men still report significant levels of burden. With the aging population and increased need for caregivers, there is a gap in knowledge exploring the male caregiving experience. Understanding male caregiving experiences can inform clinicians on developing future strategies to tailor support for this underrepresented group. The purpose of this qualitative descriptive study was to explore the experiences of male FCGs of people with ADRD. The Caregiver Identity Theory (CIT) was used to guide the study exploring participants’ perception of self-identity within their caregiving relationship and self-identity as a male. Eleven male caregivers, recruited through social media and community resources, were interviewed by telephone or Zoom. Interviews were recorded, transcribed, and analyzed using thematic analysis. Four major themes emerged highlighting males’ struggles with the unfamiliar caregiving role and changing identity; their acknowledgement of personal growth and discovery through caregiving, challenges in finding the “right” kind of support, and perceived reshaping of masculinity through the caregiving role. Male caregivers express unique experiences as FCGs suggesting future research is needed to explain gender differences in caregiving and identify additional factors that influence male caregivers’ experiences. Furthermore, findings indicate clinicians should tailor support strategies for male FCGs’ as they fulfill this potentially unfamiliar role.
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Nogueira, Douglas José, Ruth Minamisava, Sheila Araujo Teles, Sandra Maria Brunini de Souza, Jacqueline Andréia Bernardes Leão Cordeiro, Denise Soares de Cirqueira, Virginia Visconde Brasil, et al. "Factors Associated with Marital Satisfaction and Quality of Life in Family Caregivers of Patients with Mental Disorders." International Journal of Environmental Research and Public Health 16, no. 16 (August 8, 2019): 2825. http://dx.doi.org/10.3390/ijerph16162825.
Abstract:
(1) Background: The aim of this research was to analyze factors associated with quality of life (QoL) and marital satisfaction in married family caregivers of patients with mental disorders. (2) Methods: A cross-sectional study was conducted in all community mental health services in Goiania municipality, Brazil, in 2016–2017. Married family caregivers of patients with severe and persistent mental disorders were recruited and their QoL and marital satisfaction was assessed by using the World Health Organization Quality of Life Instrument Abbreviated version (WHOQOL-BREF) and Marital Satisfaction Scale. Multiple linear regressions were performed to identify factors associated with QoL and marital satisfaction. (3) Results: For 163 family caregivers, the psychological and environmental QoL domains presented the best and the worst scores, respectively. Factors independently associated with better QoL for caregivers were male caregiver, the younger age of a caregiver, >8 years of schooling, ≥5 years as a caregiver who performed physical activities, caregiver without chronic disease, and no patient’s crisis in the last 30 days. Factors independently associated with marital satisfaction of the caregiver were male caregiver, caregiver with >8 years of schooling, caregiver who received support by relatives to care for the patient, caregiver who performed physical activities, no patient’s crisis in the last 30 days, and patient hospitalization in the last six months; (4) Conclusions: The main predictor for marital satisfaction was support by relatives, and for QoL it was no patient’s crisis in the last 30 days.
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Mirzaei, Abasat, Rasoul Raesi, Sam Saghari, and Mehdi Raei. "Evaluation of Family Caregiver Burden among COVID-19 Patients." Open Public Health Journal 13, no. 1 (December 31, 2020): 808–14. http://dx.doi.org/10.2174/1874944502013010808.
Abstract:
Background: Coronaviruses are a large group of viruses from the Coronaviridae family. Not only do the coronaviruses disrupt patients' lives, but they also affect caregivers. This study aimed to assess the burden of family caregivers of COVID-19 patients discharged from a hospital in eastern Iran. Materials and Methods: A descriptive cross-sectional study was conducted with 210 family caregivers of COVID-19 inpatients and outpatients. A total of 210 COVID-19 patients referred to 22nd-Bahman Hospital of Khaf from March 2020 to June 2020 were selected via simple randomization. Data were collected using the Zarit caregiver burden scale and a demographics form. Results: The care burden scores were 83.2% and 80.9% in the family caregivers of inpatients and outpatients, respectively, indicating the severity of care burden for COVID-19 patients. The mean scores of objective, subjective, and subjective-objective caregiver burden were significantly higher in male family caregivers and caregivers of inpatients than in female caregivers and caregivers of outpatients [p <0.01]. Conclusion: The high objective, subjective, and subjective-objective caregiver burden in family caregivers is an alarm for mental health policy-makers. Therefore, healthcare managers need to consider plans and measures to reduce the care burden of family caregivers of COVID-19 patients.
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Su, Jian-An, and Chih-Cheng Chang. "Association Between Family Caregiver Burden and Affiliate Stigma in the Families of People with Dementia." International Journal of Environmental Research and Public Health 17, no. 8 (April 17, 2020): 2772. http://dx.doi.org/10.3390/ijerph17082772.
Abstract:
Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma.
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Liang, Jiaming, and Maria Aranda. "The Role of Secondary Care Networks, Gender, and Race on Primary Caregiver Burden." Innovation in Aging 5, Supplement_1 (December 1, 2021): 490–91. http://dx.doi.org/10.1093/geroni/igab046.1893.
Abstract:
Abstract In addition to primary caregivers, many older adults receive care from secondary care networks (SCN), which include family members and friends. Literature rarely considers support that SCN provided to primary caregivers. This study examines: (a) the association between SCN support and primary caregiver burden, and (b) the intersectional effects of gender (male/female)-race (White/Black) identities of primary caregivers on the association. A cross-sectional study using data from 2015 National Health and Aging Trend Study (NHATS) and National Study of Caregiving (NSOC) was conducted. A total of 967 older adults, 967 primary caregivers, and 2253 secondary caregivers were selected. SCN support was measured by (a) care domain overlap, and (b) proportion of caregiving by SCN. Negative binomial regressions on overall and split samples estimated main effects of SCN support and the intersectional effects of gender and race. Both SCN-related variables were associated with primary caregiver burden, but significant three-way interaction was only found between gender, race, and proportion of caregiving by SCN. Black female caregivers reported heaviest burden and having SCN support was associated with lower risk of being burdened. Whereas Black male caregivers reported lightest burden and SCN support was not associated with their perceived burden. Our findings support the positive role of SCN in reducing stress of primary caregivers, and demonstrate that positive impacts of SCN support vary across gender-race groups. The results indicate a strong need for support programs aimed at promoting cooperation among family caregivers for burden reduction, especially families with female and Black primary caregivers.
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Kovaleva, Mariya A., Melinda Higgins, Bonnie M. Jennings, Mi-Kyung Song, Carolyn Clevenger, Patricia C. Griffiths, and Ken Hepburn. "PREDICTORS OF CHANGES IN WELL-BEING AMONG THE INTEGRATED MEMORY CARE CLINIC CLIENTS." Innovation in Aging 3, Supplement_1 (November 2019): S115. http://dx.doi.org/10.1093/geroni/igz038.425.
Abstract:
Abstract The Integrated Memory Care Clinic (IMCC) at Emory Healthcare is a patient-centered medical home led by advanced practice registered nurses who seamlessly provide dementia care and primary care. This analysis explored predictors of significant changes in clients’ well-being and symptoms in clients’ first-year experience at the IMCC (N=42 caregivers, three assessments over nine months). The significant changes were decreases in caregivers’ distress regarding PLWDs’ delusions (Delusions-Distress) and PLWDs’ anxiety (Anxiety-Distress), and in PLWDs’ severity of delusions, depression, and total symptom severity. Mixed linear models were used to determine significant predictors among baseline sociodemographic characteristics that correlated significantly with outcomes that changed significantly over time. Caregivers not employed outside home had lower baseline Delusions-Distress (p=0.006) and slower decline in Delusions-Distress (p=0.015). The longer PLWD needed care, the lower baseline Delusions-Distress caregivers reported (p=0.023). Caregivers not living with their PLWD reported higher baseline Anxiety-Distress (p=0.016). Caregivers not employed outside home reported lower baseline Delusions-Severity for their PLWD (p=0.006). Caregivers not employed outside home reported PLWDs’ lower baseline depression severity (p=0.026). Older caregivers reported PLWDs’ lower baseline total symptom severity (p=0.002). Increase in caregiver’s age was associated with PLWDs’ higher total symptom severity (p=0.049). For PLWD with male caregivers, total baseline symptom severity was lower compared to PLWD with female caregivers (p=0.01). These findings highlight that PLWDs’ illness duration and caregivers’ employment status, living arrangement, age, and gender may determine their perception of their PLWDs’ symptoms. Clinicians may individualize caregiver education with the knowledge of such predictors.
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Kahn, Phoebe V., Heather A. Wishart, Jennifer S. Randolph, and Robert B. Santulli. "Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender." Current Gerontology and Geriatrics Research 2016 (2016): 1–5. http://dx.doi.org/10.1155/2016/8316045.
Abstract:
Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI) and the Caregiver Section of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS-C). Scores on the FS-ADS-C and ZBI were positively correlated (rs=.51,p<.001). Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80)= −4.37,p<.001) and more burden on the ZBI (t(80)= −2.68,p=.009) compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8)= −2.22,p=.034) and more burden on the ZBI (t(80)= −2.65,p=.010) than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.
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Coe, Maureen, and Anne Neufeld. "Male Caregivers’ Use of Formal Support." Western Journal of Nursing Research 21, no. 4 (August 1999): 568–88. http://dx.doi.org/10.1177/01939459922044045.
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Mays, Gloria Denise, and Carole Holden Lund. "Male Caregivers of Mentally Ill Relatives." Perspectives in Psychiatric Care 35, no. 2 (January 16, 2009): 19–28. http://dx.doi.org/10.1111/j.1744-6163.1999.tb00571.x.
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Kaye, Lenard W., and Jeffrey S. Applegate. "Family Support Groups for Male Caregivers:." Journal of Gerontological Social Work 20, no. 3-4 (February 4, 1994): 167–85. http://dx.doi.org/10.1300/j083v20n03_08.
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Pierce, Linda L., and Victoria Steiner. "What Are Male Caregivers Talking About?" Topics in Stroke Rehabilitation 11, no. 2 (April 2004): 77–83. http://dx.doi.org/10.1310/mhrl-nwl5-9xcg-jemc.
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Séguin, Lise, and Bilkis Vissandjee. "Les différences liées à la spécificité des genres dans la prise en charge d'un proche fragilisé." Canadian Journal on Aging / La Revue canadienne du vieillissement 22, no. 1 (2003): 109–25. http://dx.doi.org/10.1017/s0714980800003779.
Abstract:
ABSTRACTThe goal of this study is to describe gender-specific care situations based on interviews and case studies with key caregivers. Eight main themes emerged; namely, the action of taking a certain degree of additional responsibility, the perception of the process of illness, the care received from the formal and informal networks, the effects of assuming care on the male or female caregiver's social life, the quality of care given, the caregiver's own health, the costs associated with caregiving and the survival strategies adopted by male and female caregivers. Recommendations were proposed by interviewees and the findings point to the conclusion that changes to the health and social services network have affected women and men informal caregivers. Women enjoyed limited informal support, and it would appear that informal caregiving has consequences that affect the health, mental well-being, social life, and economic autonomy of women. These case studies will contribute to a systematic gender-based analysis during the development of programs and policies directed towards formal and informal caregivers.
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Chen, Ya-Mei. "Differences in Outcomes of Caregiver Support Services for Male and Female Caregivers." SAGE Open 4, no. 3 (August 12, 2014): 215824401454816. http://dx.doi.org/10.1177/2158244014548169.
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Bédard, Michel, D. William Molloy, David Pedlar, Judith A. Lever, and Michael J. Stones. "Associations Between Dysfunctional Behaviors, Gender, and Burden in Spousal Caregivers of Cognitively Impaired Older Adults." International Psychogeriatrics 9, no. 3 (September 1997): 277–90. http://dx.doi.org/10.1017/s1041610297004444.
Abstract:
Reductions in healthcare spending and current demographic trends will result in increasing demands to care for aging relatives, especially those with cognitive impairment (e.g., Alzheimer's disease). Taking care of older individuals with cognitive impairment can be very challenging and burdensome. Caregiver burden is associated with negative outcomes such as caregiver depression and increased likelihood of patient institutionalization. One hundred eleven patients and their spousal caregivers were studied using a pre-post design. All subjects received a comprehensive medical intervention that included medical management of patients' problems and education of caregivers. We examined changes in patients' function and caregiver burden. At follow-up, patients' cognition and independence in activities of daily living had continued to deteriorate whereas their mood was improved. Regression analyses showed that changes in caregiver burden were positively associated with changes in the frequency of dysfunctional behaviors but not with changes in cognition. Gender was also related to changes in caregiver burden; male caregivers were more likely than female caregivers to report reductions in burden at follow-up. These data suggest medical interventions may provide some relief to caregivers of cognitively impaired older patients, but more research is required to identify the causal agents of this effect.