10,932 results on '"caregiving"'
Search Results
2. Harmony in hardship: Unveiling parental coping strategies with the challenges of child's hematopoietic stem cell transplantation
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Maleki, Maryam, Dehghan Nayeri, Nahid, Hamidieh, Amir Ali, Pouraboli, Batool, and Mardani, Abbas
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- 2024
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3. Diet management of older subjects with Oropharyngeal Dysphagia: The efficacy of ready-made texture-modified and fortified meals
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Jukic Peladic, Nikolina, Orlandoni, Paolo, Bartoloni, Laura, Giulioni, Giulia, Venturini, Claudia, and Fumagalli, Alessia
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- 2024
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4. The Role of Grandparents in Facilitating Children's Physical Activity.
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Jongenelis, Michelle I., Budden, Timothy, Christian, Hayley, Coall, David A., Jackson, Ben, Nathan, Andrea, and Glassenbury, Emma
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GRANDPARENT-grandchild relationships ,PHYSICAL activity ,SOCIAL control ,GRANDPARENTS ,GRANDCHILDREN - Abstract
Background: Research suggests there is considerable opportunity to improve children's movement behaviors while they are being cared for by their grandparents. An understanding of the extent to which grandparent practices facilitate children's engagement in physical activity is critical to the development of health interventions targeting grandparent caregivers. This study examined the activity-related beliefs and practices of grandparents and their association with grandchildren's engagement in various movement behaviors while in grandparental care. Methods: Australian grandparents (N = 1190; 60% women) who provided regular care to a grandchild aged 3–14 years were recruited via a web panel provider to complete an online survey. The survey assessed grandparents' physical activity-related beliefs (eg, perceived importance) and practices (eg, support and social control) and their grandchildren's engagement in physical activity (unstructured, structured, and outdoor play) and screen-based activities while in grandparental care. Results: The importance of grandchildren's physical activity was rated highly by grandparents. Grandparents' support for their grandchildren's physical activity was positively associated with their grandchildren's engagement in structured physical activity, unstructured physical activity, and outdoor play. Negative social control was associated with greater engagement in screen-based activities. Other correlates of grandchildren's physical activity and screen-based activities included grandparents' own engagement in these activities. Conclusions: Findings highlight the importance of reinforcing the beliefs and practices that positively influence children's movement behaviors and addressing those that have unintended consequences. Encouraging grandparents to support their grandchildren's physical activity and discouraging forms of negative social control are likely to be important in efforts to promote physical activity in children. [ABSTRACT FROM AUTHOR]
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- 2024
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5. Sharing Food Can Backfire: When Healthy Choices for Children Lead Parents to Make Unhealthy Choices for Themselves.
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Wight, Kelley Gullo, Liu, Peggy J., Zhou, Lingrui, and Fitzsimons, Gavan J.
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FOOD preferences ,PARENTS ,CHILD nutrition ,SELF ,SHARING ,PARENTING - Abstract
Many consumers are caregivers and, as part of caregiving, frequently make food choices for their dependents. This research examines how food choices made for children influence the healthiness of parents' subsequent self-choices. Whereas prior work focuses on choices for the self (others) as based on self-needs (other-needs), the authors theorize when and why self-choices involve consideration of other-needs. Five studies, including a nursery school field study, test the effect of choosing healthy food for a child on the healthiness of parents' self-choices, focusing on the role of anticipating potentially sharing self-choices with one's child. Potential sharing increased parents' likelihood of making an unhealthy subsequent self-choice if they first made a healthy choice for their child. This effect was driven by parents' present-focused parenting concerns about whether one's child would eat and enjoy healthy options chosen for them. This effect was mitigated when parents instead had future-focused parenting concerns. Additionally, this effect was mitigated after making an initial choice for the child that was (1) unhealthy or (2) healthy but relatively liked by the child. This research contributes to understanding how choices for others shape choices for the self and offers important marketing and policy implications. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Perceptions about dementia clinical trials among underrepresented populations: a nationally representative survey of U.S. dementia caregivers.
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Leggins, Brandon, Hart, Danielle, Jackson, Ashley, Levenson, Robert, Windon, Charles, Merrilees, Jennifer, and Chiong, Winston
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Alzheimer’s disease ,Caregiving ,Clinical trials ,Dementia ,National survey ,Recruitment ,Adult ,Aged ,Aged ,80 and over ,Female ,Humans ,Male ,Middle Aged ,Black or African American ,Caregivers ,Clinical Trials as Topic ,Dementia ,Hispanic or Latino ,Surveys and Questionnaires ,United States ,White - Abstract
BACKGROUND: The research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipients clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners. METHOD: We embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression. RESULT: The sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p =
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- 2024
7. Associations between caregiving status, acculturation, and psychological distress in a diverse sample
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Nguyen, Julia P, Hoang, Diane, Zhou, Kieran, Harvey, Danielle J, Dam, QuynhAnh, and Meyer, Oanh L
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Psychology ,Applied and Developmental Psychology ,Basic Behavioral and Social Science ,Behavioral and Social Science ,Caregiving Research ,Clinical Research ,Good Health and Well Being ,Humans ,Acculturation ,Caregivers ,Female ,Male ,Middle Aged ,California ,Psychological Distress ,Adult ,Aged ,Asian ,Stress ,Psychological ,Hispanic or Latino ,Health Surveys ,Native Hawaiian or Other Pacific Islander ,Young Adult ,Social Support ,Adolescent ,White ,acculturation ,mental health ,distress ,caregiving ,social determinants ,Medical and Health Sciences ,Psychology and Cognitive Sciences ,Geriatrics ,Applied and developmental psychology - Abstract
ObjectivesIncreasingly diverse caregiver populations have prompted studies examining culture and caregiver outcomes. Still, little is known about the influence of sociocultural factors and how they interact with caregiving context variables to influence psychological health. We explored the role of caregiving and acculturation factors on psychological distress among a diverse sample of adults.DesignSecondary data analysis of the California Health Interview Survey (CHIS).ParticipantsThe 2009 CHIS surveyed 47,613 adults representative of the population of California. This study included Latino and Asian American Pacific Islander (AAPI) caregivers and non-caregivers (n = 13,161).MeasurementsMultivariate weighted regression analyses examined caregiver status and acculturation variables (generational status, language of interview, and English language proficiency) and their associations with psychological distress (Kessler-6 scale). Covariates included caregiving context (e.g., support and neighborhood factors) and demographic variables.ResultsFirst generation caregivers had more distress than first-generation non-caregivers (β=0.92, 95% CI: (0.18, 1.65)); the difference in distress between caregivers and non-caregivers was smaller in the third than first generation (β=-1.21, 95% CI: (-2.24, -0.17)). Among those who did not interview in English (β=1.17, 95% CI: (0.13, 2.22)) and with low English proficiency (β=2.60, 95% CI: (1.21, 3.98)), caregivers reported more distress than non-caregivers.ConclusionsNon-caregivers exhibited the "healthy immigrant effect," where less acculturated individuals reported less distress. In contrast, caregivers who were less acculturated reported more distress.
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- 2024
8. The Effect of a Physical Activity Intervention on Burden and Depressive Symptoms in Depressed Family Caregivers of Patients With Schizophrenia: A Randomized Controlled Trial.
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Bademli, Kerime, Lök, Neslihan, and Lök, Sefa
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CAREGIVERS ,PHYSICAL activity ,RANDOMIZED controlled trials ,PEOPLE with schizophrenia ,PATIENTS' families ,SERVICES for caregivers - Abstract
Background: The study aimed to investigate the efficacy of a 12-week physical activity intervention for caregivers of patients with schizophrenia. Method: Family caregivers of patients with schizophrenia were recruited and randomized into either a physical activity group (n = 31) or a control group (n = 31). The 12-week "Physical Activity Program" consisted of 10 minutes of warm-up activities as the initial segment, 20 minutes of rhythmic exercises as the activity segment, 10 minutes of cool-down exercises as the final segment, and 40 minutes of free walking. The physical activity program was designed to accommodate the ergonomics and physiological structure of the caregiver. The program consisted of 12 sessions. The Zarit Caregiver Burden Scale and the Beck Depression Inventory were used to the physical activity and control groups before the program's implementation. Results: A total of 62 caregivers were randomized to the intervention (n = 31) or control group (n = 31). Postintervention measurement was completed by 61 caregivers, and all the caregivers completed the intervention. Mean scores of Zarit Caregiver Burden Scale score and Beck Depression Inventory score in the physical activity group of caregivers at postintervention, significantly reduced at <.05 level than their mean baseline scores. Conclusions: Engagement in a 12-week physical activity intervention can improve the perceived burden of caregiving and symptoms of depression. Future research should examine with larger sample groups, carry out interventions, and apply the physical activity intervention by targeting caregivers, along with different interventions. [ABSTRACT FROM AUTHOR]
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- 2023
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9. Empirically studying university faculty caring intelligence
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Hendrickson, Kenny A. and Francis, Kula A.
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- 2024
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10. Examining Utilization of Formal Supports and Related Impacts on Overall Well-Being Among East Asian American Family Caregivers of Persons With Dementia: A Mixed-Methods Study
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Lee, Kathy, Cassidy, Jessica, Lee, Jihui, Seo, Chang Hyun, Lomelin, Alan Kunz, Shin, Hye-Won, and Grill, Joshua D
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Health Services and Systems ,Social Work ,Health Sciences ,Human Society ,Behavioral and Social Science ,Caregiving Research ,Neurosciences ,Neurodegenerative ,Clinical Research ,Dementia ,Aging ,Alzheimer's Disease ,Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD) ,Health Services ,Brain Disorders ,Acquired Cognitive Impairment ,8.1 Organisation and delivery of services ,7.1 Individual care needs ,Good Health and Well Being ,Humans ,Asian ,Asian People ,Caregivers ,Ethnicity ,United States ,Caregiving ,Cultural factors ,Diversity in aging ,Formal support services ,Minority aging (race ,ethnicity) ,Minority aging ,Clinical Sciences ,Gerontology - Abstract
Background and objectivesAlthough East Asian American family caregivers are known to underutilize formal support services, there is a lack of evidence regarding the associations of formal service utilization with caregivers' well-being. This study examined the prevalence of different types of home-and community-based formal service utilization among Korean and Chinese American family caregivers of persons with dementia and how utilization of such services was associated with their well-being. We also explored their overall experience in accessing and utilizing formal dementia support services and programs.Research design and methodsWe employed a convergent mixed-methods study design. In a convenience sampling method, we recruited 62 family caregivers. Logistic regression and thematic analysis were utilized to analyze data.ResultsThe results showed in-home services were mostly utilized among family caregivers of these ethnic groups. Out of 9 different support services, those who utilized nutrition programs and case management were more likely to report higher overall well-being. Four themes were developed: (1) awareness of formal support services but uncertainty on how to access them, (2) language barriers imposing additional challenges in accessing formal support services, (3) traveling to access culturally appropriate services, and (4) desire for culturally tailored medical and long-term care services.Discussion and implicationsFindings from this study suggest the importance of case management services to overcome barriers to accessing and utilizing a wide range of formal support services and provision of culturally appropriate food in formal support services to increase East Asian American family caregivers' utilization of long-term care services.
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- 2024
11. Why is the composition of older adults' care network associated with psychological wellbeing: an application of the self-determination theory.
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Swinkels, J. C., Abbing, J., and Broese van Groenou, M. I.
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ELDER care , *COMMUNITY health services , *AUTONOMY (Psychology) , *CENTER for Epidemiologic Studies Depression Scale , *DATA analysis , *RESEARCH funding , *PARTICIPANT observation , *INTERVIEWING , *LONG-term health care , *QUESTIONNAIRES , *LONELINESS , *DESCRIPTIVE statistics , *INFORMATION services , *PSYCHOLOGY , *LONGITUDINAL method , *SOCIAL skills , *CONCEPTUAL structures , *ANALYSIS of variance , *STATISTICS , *THEORY , *NEEDS assessment , *PSYCHOLOGICAL tests , *DATA analysis software , *WELL-being , *REGRESSION analysis , *MENTAL depression - Abstract
Objectives: Older care recipients have different types of care networks, varying from spouse-only to large mixed care networks, that add to different levels of wellbeing. Applying Self-Determination Theory (SDT) to the care context, we argue that the care network composition may foster or hamper the three basic needs for wellbeing: relatedness, autonomy and competence. Method: Data are from ten observations between 1992 and 2022 of the Longitudinal Aging Study Amsterdam (N = 18,434 observations from 4,837 older Dutch adults). Five care network types are used: no care, partner, informal, formal or privately paid care. Mixed-hybrid-multilevel regression analysis of depressive symptoms as measure of wellbeing is applied on care network type and loneliness, mastery and care sufficiency as indicators of the three basic needs for wellbeing. Results: Receiving care from a partner care network is, compared to the formal care network, the most negatively associated with depressive symptoms, followed by informal care and privately paid care. Differences in care network types existed in loneliness and care sufficiency, but not in mastery, and in part explained the association between care network types and depressive symptoms. Results of between and within effects are comparable. Conclusion: Using a rich data set and advanced methodology support the hypotheses that formal care networks hamper wellbeing due to insufficient care and increased loneliness, in particular compared to partner and informal care. The role of mastery was less important, possibly because it does not measure care related level of control. [ABSTRACT FROM AUTHOR]
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- 2025
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12. Positive affect expression during a play interaction and psychological health among older adults living with cognitive impairment and their adult children.
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Gad, Dustin, Wells, Jenna L., Piechota, Amanda, Feeney, Brooke, Birditt, Kira S., Marottoli, Richard A., Gaugler, Joseph E., Vranceanu, Ana-Maria, and Monin, Joan K.
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PLAY , *SELF-evaluation , *PSYCHOTHERAPY , *STATISTICAL correlation , *RESEARCH funding , *MENTAL health , *MENTAL illness , *SEX distribution , *PARENT-child relationships , *EMOTIONS , *DESCRIPTIVE statistics , *COGNITION disorders , *RESEARCH methodology , *RESEARCH , *AFFECT (Psychology) , *PSYCHOLOGY of parents , *PSYCHOLOGY of adult children , *FACIAL expression , *MENTAL depression , *MEMORY disorders , *VIDEO recording , *LAUGHTER , *COGNITION , *PSYCHOSOCIAL factors , *OLD age - Abstract
Objectives: We examined the extent to which positive affect expression in play interactions between adult children and their parents living with cognitive impairment was associated with lower depressive symptoms and mental health difficulties for both dyad members. Gender differences in positive affect expression were also examined. Method: Dyads (N = 126) self-reported their depressive symptoms and mental health difficulties. Dyad members later engaged in a video-recorded play interaction together, and their positive affect expression was observationally coded by trained coders in terms of 'enjoyment', 'laughter', and 'positive affect towards partner'. Results: Findings from mixed models using the Actor Partner Interdependence Model showed that one's partner's positive affect was associated with one's own lower depressive symptoms. There were no significant actor effects or effects of role (parent vs. child). Results also revealed that women expressed more positive affect and had greater mental health difficulties, but not depressive symptoms. We found that one's partner's positive affect expressions were more associated with women's mental health than men's mental health. Conclusion: Positive affect expression may be a useful indicator of psychological health in parent-child relationships in which the parent has cognitive impairment. Positive affect may be useful to target in supportive, dyadic, psychosocial interventions. [ABSTRACT FROM AUTHOR]
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- 2025
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13. Family Management of Hypertension in Brazil: A Cross-Sectional Study.
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Sales, Paloma Cesar de, McCarthy, Margaret M., Dickson, Victoria Vaughan, Sullivan-Bolyai, Susan, Melkus, Gail D'Eramo, and Chyun, Deborah
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In Brazil, research indicates that primary family members are the main source of support for individuals with chronic conditions such as hypertension (HTN). The burden of caregiving not only hinders effective HTN management but can also cause stress and anxiety, potentially leading to HTN in caregivers. Despite this, few studies have explored the impact of caregiving on these family members. Aims of the study were to: (1) Describe the prevalence of blood pressure (BP) control in family members of individuals with HTN; (2) identify family member perspectives on facilitators and barriers to HTN management; and (3) identify influences that help or interfere with family member functioning (levels of stress, quality of life [QOL], and caregiver burden). This descriptive, cross-sectional study included 213 family members randomly selected from 3 Family Health Strategy units. Family members were largely female (n = 143; 67.1%); the mean age was 60.1 years (SD ± 17.02) and 42.6% (n = 96) had less than a high school education. The three most important facilitators and barriers were related to medication, medical visits, healthy eating, physical activity, and stress. The mean systolic BP was 132.7 (SD ± 21.9) mmHg and a diastolic BP of 85.9 (SD ± 18.1) mmHg with 120 (56.3%) of family members classified as having normal BP. In regard to family member contributions to the self-care of the individual with HTN, family members displayed low levels of self-care maintenance (n = 148; 69.4%) and management (n = 47; 71.2%) support, while a slight majority (n = 114; 53.5%) had adequate levels of self-care confidence in supporting the individual with HTN. Family members (n = 189; 88.8%) showed moderate-to-high levels of perceived stress, but good physical (n = 189; 88.7%) and mental QOL (n = 196; 92%) and low levels of caregiver burden (n = 113; 53.1%). A variety of contextual sociocultural influences were associated with the outcomes under study. Family-based interventions are urgently needed to address the inadequate management of HTN. [ABSTRACT FROM AUTHOR]
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- 2025
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14. The Impact of an Intergenerational Service Learning Program on Psychological Distress for Homebound Older Adults.
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Chan, Keith T., Marsack-Topolewski, Christina N., Ratnayake, Maggie, Kaplan, Daniel B., Voet, K. Alida, Riemenschneider, Maddi, and Graves, Jillian
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SERVICE learning , *PSYCHOLOGICAL distress , *OLDER people's attitudes , *COMMUNITY development , *MULTIVARIATE analysis - Abstract
This study examined the benefits of an intergenerational home-based service learning program to reduce psychological distress for homebound older adults. Multivariate regression analyses were conducted with a sample of 182 to examine the association of length of service from the program and presence of caregivers with psychological distress. Findings indicated length of service (β = -0.15, p <.05) and having a child as a caregiver (β = -0.14, p <.05) were associated with a reduction in psychological distress. Policies and practice can support a pipeline of geriatric health professionals through innovative service learning models to benefit older adults, caregivers, and students. [ABSTRACT FROM AUTHOR]
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- 2025
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15. Navigating the emotional landscape: exploring caregivers’ journey alongside breast cancer survivors with chronic pain.
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Filipponi, C., Masiero, M., Chichua, M., Traversoni, S., and Pravettoni, G.
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Purpose: Caregiving is a crucial but frequently overlooked part of cancer care, as well as the main emotions experienced by caregivers during that journey. This qualitative study aimed to explore the emotional landscape of informal caregivers in supporting breast cancer survivors (BCs) living with chronic pain (CP). Methods: We conducted 3 focus groups with informal caregivers of BCs with CP. For the sentiment analysis, we used R Software and the NRC Emotion Lexicon following Plutchik’s theoretical framework of emotions. The emotion spectrum was visualized using the “PyPlutchik” package in Python. Results: Caregivers (Mage = 43.17, SD = 10.97) predominantly experienced negative emotions (n = 65; M = 0.06, SD = 0.25) compared to positive ones (n = 37; M = 0.10, SD = 0.31), with sadness (n = 46), fear (n = 43), and disgust (n = 37) being most common, alongside feelings of remorse (n = 37), despair (n = 41), and shame (n = 37). The COVID-19 pandemic, as reported by caregivers, also intensified feelings of shame, frozenness, and ambivalence. Despite more frequent negative sentiments, trust (n = 53) and hope (n = 24) were consistently expressed, indicating a complex emotional landscape where positive and negative feelings coexist. Discussion: This study identifies the broad spectrum of emotions experienced by caregivers in the context of BCs with CP, ranging from individualistic feelings (e.g., fear, despair) to social emotions (e.g., shame, frozenness), and even includes instances of positive emotions (e.g., trust, hope). While our study highlights the emotional toll on caregivers, we suggest that future research and interventions focus more on providing effective support frameworks to manage these emotional challenges. Any discussion regarding the specific impacts of these emotional experiences on clinical outcomes (e.g., quality of life, fear of cancer recurrence) should be approached with caution. [ABSTRACT FROM AUTHOR]
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- 2025
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16. The flexibility paradox and spatial‐temporal dimensions of COVID‐19 remote work adaptation among dual‐earner mothers and fathers.
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Parry, Ashley
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FLEXIBLE work arrangements , *TELECOMMUTING , *SOCIAL norms , *WORKING mothers , *MODERN society - Abstract
There is an increased blurring of work and home life in contemporary society due to access to technology and the mass expansion of remote work during the COVID‐19 pandemic. Flexible working arrangements like remote work can lead to men self‐exploiting themselves in the workplace and women self‐exploiting themselves in the domestic sphere in the context of a work‐centric society that is reliant upon passion at work and traditional gender norms. This study extends Chung's ideas on gendered patterns in the flexibility paradox by examining spatial‐temporal dimensions of COVID‐19 remote work adaptation among an extreme sample: dual‐earner parents with young children. Semi‐structured interviews were conducted on Zoom with 20 mothers and 17 fathers working from home in the U.S. with children ages 5 and under between the summer of 2020 and the spring of 2021. Findings indicate that fathers' work is prioritized in spatio‐temporal terms whereas mothers' work is fragmented and dispersed. Gendered patterns in the flexibility paradox and labor shouldered by mothers as primary caregivers are considered as potential theoretical explanations for the privileging of fathers' workspace and work time. [ABSTRACT FROM AUTHOR]
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- 2025
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17. The use of photovoice to explore the physical disability experience in older adults with mild cognitive impairment/early dementia.
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Jenkins, Emerald, Szanton, Sarah, Hornstein, Erika, Reiff, Jenni Seale, Seau, Quinn, Huynh, Grace, Gray, Ja'Lynn, Wright, Rhonda Smith, Li, Qiwei, Cotter, Valerie, Curriero, Samantha, and Taylor, Janiece
- Abstract
Although co-occurring cognitive impairment and physical disability in older adults is common, there is little understanding of how this group perceives their ability to do their daily activities. This study used photovoice to explore how older adults with MCI/early dementia and physical disability without and with care partners (dyads) perceive challenges with their daily activities. Photovoice is a visual research methodology to capture participants' insight on aspects of their daily lives. No known studies have taken this approach to explore the experiences of older adults with MCI/early dementia and co-occurring physical disability. We used a cross-sectional, exploratory research design to understand participants' (n = 12) experiences in their home environment. Photos and participant thoughts on the photos were categorized based on the Blackfoot Breath of Life Theory and the Hierarchy Model of Needs in Dementia, an adaptation of Maslow's Model. Notable findings included: awareness of physical/cognitive difficulties by older adults, solutions for ADL difficulty in persons with MCI/early dementia, care partners' difficulty recognizing pain without the presence of severe emotional or physical responses, reducing mood severity, and self-esteem needs met with structured, memory-issue adapted, meaningful activities. Older adults with co-occurring physical disability and MCI/early dementia identified both physiological and psychological needs despite challenges impacting their cognition. Photovoice evoked daily situations of these individuals and revealed the importance of developing individualized intervention elements for older adults with dementia and physical disability. [ABSTRACT FROM AUTHOR]
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- 2025
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18. Caregivers and Coping: Well-Being, Depression, and Coping Strategies Among Caregivers of Young Adults With Developmental Disabilities.
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Singer, Hannah, Clarke, Elaine B., Schiltz, Hillary K., and Lord, Catherine
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MULTIRACIAL people ,YOUNG adults ,CAREGIVERS ,INTELLECTUAL disabilities ,CAREGIVER education - Abstract
This 10-year study followed 134 caregivers of young adults with autism and intellectual disabilities, examining the effects of caregivers' coping strategies, sociodemographic features, and young adult symptomatology on caregiver well-being and depression. Lower caregiver education and higher young adult externalizing behaviors predicted lower well-being and higher depression among caregivers. Caregivers who were Black or mixed-race experienced higher depression than White caregivers. All five coping strategies investigated predicted changes in caregiver well-being and/or depression, with some effects moderated by young adult externalizing behaviors and sociodemographic features. Notably, higher use of positive coping among caregivers of adults with high externalizing behaviors predicted higher caregiver well-being and lower depression. Findings highlight the importance of effective coping strategies for improving caregiver mental health. [ABSTRACT FROM AUTHOR]
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- 2025
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19. Exploring Social Support Experiences of Caregivers of Persons Living With Dementia in Hospice Care.
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Cho, Hannah, Sefcik, Justine S., Washington, Karla, Parker Oliver, Debra, and Demiris, George
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As the number of persons living with dementia (PLWD) enrolling in hospice care rises, caregiver support becomes increasingly crucial. While social support can help buffer caregiver stress, many caregivers report feeling isolated and having unmet needs, highlighting the limited research on this population. This qualitative descriptive study aimed to better understand caregivers' social support during the period when the PLWD is enrolled in hospice care. Analyzing qualitative data from 22 caregivers of PLWD using conventional content analysis, we identified the theme "Variations in Social Connections." This theme encompasses two subthemes: "never completely alone," indicating social support from family, friends, and neighbors, and "disappointed sometimes," reflecting instances when some individuals in the caregivers' lives couldn't provide regular support. These findings underscore the need for individualized interventions, as each caregiver experiences social support uniquely. Future research should consider the variations in social support among caregivers of PLWD to inform caregiving practices effectively. [ABSTRACT FROM AUTHOR]
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- 2025
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20. "How do You Take that Much Time for One Person's Life?" Experiences of Dementia Caregivers Who are Not Immediate Family.
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Lowers, Jane, Brus, Kaitlyn, Smith, Colby, Kavalieratos, Dio, Hepburn, Kenneth, and Perkins, Molly M.
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One in three people with Alzheimer's or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo), yet most dementia caregiving research has focused solely on spouses or children. This study examined the experiences of friends, neighbors, siblings, and others providing unpaid care for someone with dementia. We conducted semi-structured interviews with 14 caregivers (100% female; age 54–85, mean 71; 93% white, 7% black; 29% friend, 29% sibling or in-law, 21% neighbor, 21% church congregant). Participants balanced three priorities: the person living with dementia's quality of life, the person's safety and well-being, and the caregiver's resources. Caregivers described tensions when these priorities conflicted, such as the person with dementia's goal to live alone versus risks to their physical safety. These findings and future research can inform policies and programs to support non-family dementia caregiving. [ABSTRACT FROM AUTHOR]
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- 2025
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21. A Mixed Methods Analysis of Standardized Documentation of Serious Illness Conversations Within an Electronic Health Record Module During Hospitalization.
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Serna, Myrna Katalina, Yoon, Catherine, Fiskio, Julie, Lakin, Joshua R., Schnipper, Jeffrey L., and Dalal, Anuj K.
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Background: Analysis of documented Serious Illness Conversations (SICs) in the inpatient setting can help clinicians align management to address patient and caregiver needs. Methods: We conducted a mixed methods analysis of the first instance of standardized documentation of a SIC within a structured module among hospitalized general medicine patients from 2018 to 2019. Percentage of documentations that included a description of patient or family understanding of the patient's medical condition and use of radio buttons to answer the "prognostic information shared," "hopes," and "worries" modules are reported. Using grounded theory approach, physicians analyzed free text entries to: "What is important to the patient/family?" and "Recommendations or next steps planned." Results: Out of 5142 patients, 59 patients had a documented SIC. Patient or family understanding of the medical condition(s) was reported in 56 (95%). For "prognostic information shared," the most frequently selected radio buttons were: 49 (83%) incurable disease and 28 (48%) prognosis of weeks to months while those for "hopes" were: 52 (88%) be comfortable and 27 (46%) be at home and for "worries" were: 49 (83%) other physical suffering and 36 (61%) pain. Themes generated from entries to "What's important to patient/family?" included being with loved ones; comfort; mentally and physically present; and reliable care while those for "Recommendations" were coordinating support services; symptom management; and support and communication. Conclusions: SIC content indicated concern about pain and reliable care suggesting the complex, intensive nature of caring for seriously ill patients and the need to consider SICs earlier in the life course of patients. [ABSTRACT FROM AUTHOR]
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- 2025
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22. Policy proposals to promote inclusion of caregivers in the research funding system.
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Torres, Isabel L., Collins, Rayven-Nikkita, Hertz, Anaelle, and Liukkonen, Martta
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Research funding is critical for scientific production and career advancement in science, technology, engineering, mathematics, and medicine (STEMM). The COVID-19 pandemic has unmasked a deeply flawed research funding system riddled by inequitable policies, biased evaluations, and a lack of transparency and accountability. While most scientists were affected by the pandemic to some extent, evidence shows that women with caregiving responsibilities were disproportionately impacted, with long-term effects on their careers. However, despite calls for change by scientists globally, whose careers depend largely on funding success, decision-makers have made little to no effort to reform a funding system that marginalises a large proportion of researchers, including women, and especially mothers. Here, we review the current literature on gender bias in the STEMM funding process and propose a set of specific, actionable policies to promote caregiver inclusion and close the gender gap in research funding. [ABSTRACT FROM AUTHOR]
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- 2024
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23. A typology of US parents' mental loads: Core and episodic cognitive labor.
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Weeks, Ana Catalano and Ruppanner, Leah
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HOUSEKEEPING , *EXPLORATORY factor analysis , *CONFIRMATORY factor analysis , *GENDER differences (Psychology) , *FACTOR analysis - Abstract
Objective Background Methods Results Conclusion This article examines whether domestic cognitive labor functions like other forms of domestic labor as a means to “do gender.”Domestic cognitive labor is increasingly conceptualized as the invisible thinking work associated with childcare and housework. A critical question for this growing literature is the gender distribution of cognitive labor tasks: do women do it all, or does domestic cognitive labor follow similar patterns to other forms of domestic physical labor (e.g., childcare and housework), cleaving by separate spheres of activity? In this regard, is domestic cognitive labor another way parents “do gender” at home?Applying unique survey data from a sample of US parents (N = 3000), we assess a 21‐item battery measuring different domestic cognitive labor tasks. We first apply exploratory factor analysis and confirmatory factor analysis to identify whether domestic cognitive labor holds underlying constructs. Second, we estimate whether gender differences in these indices are robust in regression models net of a range of sociodemographic factors.We identify that domestic cognitive labor, like other forms of domestic labor, forms two distinct facets, with mothers holding the bulk of the core Daily tasks related to family well‐being and fathers holding the Episodic tasks related to maintenance and finances. Further, we document that, consistent with previous housework literature, question wording structures parents' reported contributions by gender.Ultimately, our study expands our theoretical, conceptual, and methodological understanding of domestic cognitive labor and points to the value of “doing gender” perspectives. [ABSTRACT FROM AUTHOR]
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- 2024
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24. Grandmothers matter: how grandmothers promote maternal perinatal mental health and child development.
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Riem, Madelon M. E. and van der Straaten, Merel
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MENTAL illness ,GRANDPARENTS ,CHILD development ,SOCIAL support ,CHILDREN'S health ,GRANDCHILDREN ,HEALTH programs - Abstract
Low social support has been identified as a risk factor for maternal perinatal mental health problems. However, previous studies have predominantly focused on general social support or support from the partner, often overlooking the roles of grandparents. This mini review discusses recent developments in perinatal health research showing that supportive grandparents may constitute a protective factor against the development of maternal perinatal mental health problems. In addition, we will discuss how grandparental support may promote fetal and child health. The mini review concludes with a call for more research on the role of grandparents in perinatal health. Recognizing grandmothers as collaborators in maternal and child health may afford more effective perinatal health programs and clinical practice, thereby reducing the risk of adaptational and developmental problems. [ABSTRACT FROM AUTHOR]
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- 2024
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- View/download PDF
25. Navigating Challenges and Coping Strategies Among Family Caregivers of Memory-Impaired Stroke Survivors in Metro Cebu, Philippines.
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Pondoc, Sharmaine Shane W. and Bulan, Paolo Miguel P.
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- *
FAMILY support , *CAREGIVERS , *OCCUPATIONAL therapists , *STROKE patients , *MEMORY disorders , *ABUSE of older people , *LIFE course approach - Abstract
AbstractThis study explored the lived experiences of family caregivers for stroke survivors with memory impairments in Metro Cebu, Philippines, using a qualitative design. In-depth semi-structured interviews with six caregivers were analyzed using Yin’s five-phase thematic analysis. Three key themes emerged: (1) Nurturing Patient Well-Being, highlighting the emotional and physical demands of caregiving; (2) Navigating the Trials of Caregiving, detailing the emotional, psychological, and financial challenges caregivers face; and (3) Altered Life Course, illustrating the lifestyle changes and coping mechanisms employed. The findings emphasize the need for structured support systems and tailored caregiving guidelines for occupational therapists to assist caregivers. [ABSTRACT FROM AUTHOR]
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- 2024
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26. The Well-Being Costs of Informal Caregiving.
- Author
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Krämer, Michael D. and Bleidorn, Wiebke
- Subjects
- *
LIFE satisfaction , *FULL-time employment , *PREDICTION theory , *WELL-being , *MENTAL health , *LONELINESS , *CAREGIVERS - Abstract
How does informal care affect caregivers' well-being? Theories and existing research provide conflicting answers to this question, partly because the temporal processes and conditions under which different aspects of well-being are affected are unknown. Here, we used longitudinal data from Dutch, German, and Australian representative panels (281,884 observations, 28,663 caregivers) to examine theoretically derived hypotheses about changes in caregivers' life satisfaction, affective experiences, depression/anxiety, and loneliness. Overall, results provided evidence for negative well-being effects after the transition into a caregiver role, with more pronounced and longer-lasting well-being losses in women than in men. We further found that well-being losses were larger with more time spent on caregiving, in both men and women. These results were robust across moderators of the caregiving context (care tasks, relationship with care recipient, and full-time employment). Together, the present findings support predictions of stress theory and highlight lingering questions in theoretical frameworks of care-related well-being costs. [ABSTRACT FROM AUTHOR]
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- 2024
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27. Perceived expressed emotion in individuals with a first episode of psychosis from a south Asian background.
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Ramanathan, Amrita, Miah, Syed K., Nagularaj, Lidushi, Sharif, Hira Salman, and Shaikh, Madiha
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- *
FAMILY communication , *FAMILY values , *QUALITY of service , *THEMATIC analysis , *GENERATION gap - Abstract
Aim: To explore perceived expressed emotion in the south Asian context for individuals with a first episode of psychosis (FEP). Method: Semi‐structured interviews were conducted with 16 service users experiencing a FEP to understand their experience of expressed emotion (EE) from their caregivers. Interviews were analysed using inductive thematic analysis. Results: Four main categories were identified: connection and support, understanding and awareness, boundaries and independence and context and influence. Factors influencing perceived expressed emotion such as acceptance, acculturation, warmth and expressions of love, communication and family values were identified. Findings highlight south Asian's experiences of being cared for, and their perception of EE, including warmth and connection as a strength and resource. Conclusion: The findings shed light on culturally specific EE within the context of FEP that can be considered when working with south Asian communities within early intervention services. Findings highlight the impact of navigating and negotiating bicultural identities and generational differences in EE in the British south Asian context. [ABSTRACT FROM AUTHOR]
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- 2024
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28. Longitudinal neuroanatomical increases from early to one-year postpartum.
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Dufford, Alexander J., Patterson, Genevieve, and Kim, Pilyoung
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- *
MAGNETIC resonance imaging , *HIPPOCAMPUS (Brain) , *MEDICAL sciences , *PUERPERIUM , *DIENCEPHALON - Abstract
Preclinical studies have provided causal evidence that the postpartum period involves regional neuroanatomical changes in 'maternal' brain regions to support the transition to offspring caregiving. Few studies, in humans, have examined neuroanatomical changes from early to one-year postpartum with longitudinal neuroimaging data and their association with postpartum mood changes. In the present study, we examined longitudinal changes in surface morphometry (cortical thickness and surface area) in regions previously implicated in the transition to parenthood. We also examined longitudinal volumetric neuroanatomical changes in three subcortical regions of the maternal brain: the hippocampus, amygdala, and ventral diencephalon. Twenty-four participants underwent longitudinal structural magnetic resonance imaging at 1–4 weeks and 1 year postpartum. Cortical thickness increased from early to one-year postpartum in the left (p =.003, Bonferroni corrected) and right (p =.02, Bonferroni corrected) superior frontal gyrus. No significant increases (or decreases) were observed in these regions for surface area. Volumetric increases, across the postpartum period, were found in the left amygdala (p =.001, Bonferroni corrected) and right ventral diencephalon (p =.01, Bonferroni corrected). An exploratory analysis of depressive symptoms found reductions in depressive symptoms from early postpartum to one-year postpartum were associated with greater cortical thickness in the superior frontal gyrus for both the left (p =.02) and right (p =.02) hemispheres. The findings expand our evidence of the neuroanatomical changes that occur across the postpartum period in humans and motivate future studies to examine how mood changes across this period are associated with cortical thickness of the superior frontal gyrus. [ABSTRACT FROM AUTHOR]
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- 2024
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29. Psychometric Testing of the Cross‐Culturally Adapted Thai Version of the Caregiver Self‐Efficacy in Contributing to Patient Self‐Care Scale in Caregivers of Patients With Chronic Illnesses.
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Chaiyawan, Saowannee, Suwanno, Jom, Bunsuk, Chonchanok, Kumanjan, Wanna, Klinjun, Nuntaporn, Srisomthrong, Kannika, and Thiamwong, Ladda
- Subjects
- *
CHRONIC disease treatment , *HEALTH self-care , *GOODNESS-of-fit tests , *CROSS-sectional method , *PEARSON correlation (Statistics) , *SELF-efficacy , *INCOME , *CRITICALLY ill , *PATIENTS , *RESEARCH funding , *RESEARCH methodology evaluation , *PRIMARY health care , *STATISTICAL sampling , *DESCRIPTIVE statistics , *CAREGIVERS , *MOTIVATION (Psychology) , *THAI people , *PSYCHOMETRICS , *MARITAL status , *RESEARCH methodology , *INTRACLASS correlation , *MEASUREMENT errors , *STATISTICAL reliability , *STATISTICS , *RESEARCH , *FACTOR analysis , *DATA analysis software , *EDUCATIONAL attainment , *EMPLOYMENT , *RELIABILITY (Personality trait) ,RESEARCH evaluation - Abstract
Aim: To evaluate the psychometric properties of the Caregiver Self‐Efficacy in Contributing to Patient Self‐Care Scale (CSE‐CSC). Background: The CSE‐CSC scale was developed congruently with the Caregiver Contribution to Self‐Care of Patient with Chronic Illness Inventory (CC‐SC‐CII) to assess caregiver self‐efficacy (CSE), the motivation factor of caregiving. Its applicability in Asian populations, including Thailand, was limited. Methods: Psychometric tests were guided by COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) principles. This included translating the English version into Thai, following the principles of good practice for the translation and cultural adaptation process for patient‐reported outcome (PRO) measures. Nine nursing experts evaluated the content validity. The analysis included caregivers of patients with chronic conditions from 16 primary care centres in Thailand. We tested the structural validity using exploratory factor analysis (EFA), confirmatory factor analysis (CFA) and concurrent validity for CC‐SC‐CII‐v2. We tested the scale's reliability with methods for multidimensional and unidimensional constructs, the intraclass correlation coefficients (ICCs) and measurement error variance. Results: Kappa coefficient (k = 1.00) indicated the scale's excellent content validity. The final analysis included a total of 407 samples. The EFA with the first split‐half subsample (n = 194) extracted a two‐dimensional structure. One reflected CSE in Maintenance and Monitoring behaviour and another captured CSE in Management behaviour. CFA with the second split‐half subsample (n = 213) and the overall sample (n = 407) supported the scale's bidimensional model with high factor loadings. Each dimension and the overall CSE‐CSC scale positively correlated with each scale and the overall CC‐SC‐CII‐v2. McDonald's ω and Cronbach's α (both ranged from 0.91–0.94) indicated excellent internal reliability. Test–retest reliability showed ICCs between 0.95 and 0.96. Measurement error yielded satisfactory results. Conclusion: Testing of the Thai CSE‐CSC scale supported validity and reliability, indicating that the scale can apply to Thai caregivers. This scale can be used in clinical practice and research to evaluate CSE in contribution to patient self‐care. [ABSTRACT FROM AUTHOR]
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- 2024
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30. Impacts of Caregiving for Individuals with Autism in Low-Resource Settings, a Report from the Kurdistan Region of Iraq.
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Samadi, Sayyed Ali and Rashid, Hero M.
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- *
AUTISM , *MOTHERS , *INTERVIEWING , *PARENT attitudes , *FAMILY relations , *BURDEN of care , *FATHERS , *CONCEPTUAL structures , *PSYCHOLOGICAL stress , *ASPERGER'S syndrome , *RESOURCE-limited settings - Abstract
Caring for children with different developmental trajectories brings various challenges, which are often exacerbated in low-resource settings. International research has shown that raising a child with autism strongly impacts family caregivers, particularly mothers. There is a dearth of information regarding caregiving for individuals with autism in the Kurdistan Region of Iraq (KRI) and for fathers as well as mothers. This study examined the similarities and differences in caregiving for mothers and fathers of a child with autism in KRI using validated rating scales to measure various aspects of their general well-being. Over two years, a sample of 118 parents of individuals with autism (81 mothers and 37 fathers) self-completed the rating scales, which were further discussed through individual interviews with service personnel mainly known to them. The findings indicated that mothers and fathers were similarly impacted. Although there were no statistically significant differences in the ratings of their general health, sources of stress, family functioning, and satisfaction with caregiving, the majority of parents had elevated ratings on all the measures. In addition, parents who rated their children higher on the Aberrant Behavior Checklist had significantly higher scores on their general health issues and were less satisfied with their caregiving role. Parents of female individuals with autism were also significantly more stressed compared to the male individuals with autism and parents of children who received a diagnosis before three years of age, reported fewer behavioral problems with their child compared to the parents who received a diagnosis when the child was older. In this sample, mothers and fathers seem to be similarly impacted by caring for a child with autism, which is contrary to findings from other countries. However, in this region, family bonds between couples and the wider family may have had an influence which further cross-cultural research in low-resource settings could help elucidate, notwithstanding the challenges this poses. The findings have policy implications for health authorities in the KRI to improve the support provided to both mothers and fathers who care for children with autism, which presently is rarely available to them. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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31. Paid Informal Caregivers' Management of Older Adults' Health Demands: Implication for Social Work Professionals in Contemporary Nigerian Society.
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Ene, Jacinta C., Agha, Agha A., Ebimgbo, Samuel O., Onalu, Chinyere E., Okah, Paulinus S., and Ekoh, Prince C.
- Subjects
- *
ELDER care , *SOCIAL workers , *QUALITATIVE research , *HEALTH status indicators , *MEDICAL care , *WAGES , *AGE distribution , *THEMATIC analysis , *BURDEN of care , *PSYCHOLOGY of caregivers , *MEDICAL needs assessment , *PATIENTS' attitudes - Abstract
Oftentimes, older adults experience a decline in health as they age. In Nigeria and other African countries, caregiving for older adults is usually a filial responsibility. With the decline in health and increasing demand for care, family members often require the assistance of paid informal caregivers. These are unskilled workers, extended relations and personal care attendants who shoulder the responsibility of providing services to older adults whose family members are not able to provide regular caregiving. This study explored paid informal caregivers' management of older adults' health demands and its implication for social work professionals in contemporary Nigerian society. The study employed a qualitative research method. Focus Group discussions (FGDs) were utilized to elicit data from 48 participants residing in Enugu State, Nigeria. Data was coded into parent and child notes. An inductive coding approach was adopted to provide meaning to the coded data as we studied the transcripts. Codes with similar characteristics were grouped thematically. We found that various challenges experienced by paid informal caregivers in the management of older adults' health demands were gender preference, age, health status of older adults and low financial reward. The reward received is not commensurate with the provided services and so they experience burden, stress and unsatisfied life. It was also found that paid informal caregivers adopt inadequate coping strategies and have no knowledge of health apparatus utilized in care management, owing to lagging care support. It is essential to revitalize the traditional community-based care system since care for older adults is gradually eroding to paid informal caregivers in contemporary Nigerian society. This is a clear indication that care for older adults is threatened. There is a need for social work professionals to work in collaboration with families and caregivers in various community settings. Overall, adequate health policy consideration should be given to all older adults in Nigeria. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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32. Association of Caregiving Receipt With Mental Health Utilization in a National Cohort of Older Adults.
- Author
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Wyman, Mary F., Jacobs, Josephine, Stalter, Lily, Venkatesh, Manasa, Voils, Corrine I., Trivedi, Ranak B., Gleason, Carey E., and Byers, Amy L.
- Abstract
• What is the primary question addressed by this study? Using a unique combination of comprehensive survey data and Veterans Affairs health care records encompassing 12 years, we used mixed effects logistic regression models to examine the association between receiving any in-home caregiving assistance and likelihood of mental health utilization in a sample of community-dwelling older veterans. • What is the main finding of this study? After accounting for demographics, caregiver availability, health factors, and socioeconomic status, caregiving receipt was associated with two-fold odds of MH utilization, compared to receiving no assistance. Being classified as having dementia and reporting less severe depressive symptoms potentiated the relationship between caregiving receipt and using mental health care. • What is the meaning of the finding? We found that for this group of community-dwelling older adults, having a caregiver is associated with increased odds of using mental health care, suggesting that caregivers may represent an underutilized resource to reduce age-related disparities in mental health access. There exist significant age disparities in mental health (MH) utilization, such that older adults, including older veterans, are much less likely to use MH services. In-home caregivers represent a novel, yet understudied, pathway to increase appropriate utilization. We sought to examine the association between receiving caregiving assistance and MH utilization and test moderation effects of cognitive status and depression severity in a sample of older veterans. Cross-sectional, mixed effects logistic regression with moderation analyses was used with a unique data resource combining survey data from the 2000–2012 U.S. Health and Retirement Study with Veterans Affairs (VA) healthcare administrative records. The analytic sample included N=1,957 Community-dwelling veterans (mean age 68.2 [9.7]), primarily male (96.5%) and non-Hispanic white (77.0%). Measures included MH utilization extracted from VA records or self-report; CESD-8 for depressive symptoms; and the Langa-Weir cognitive status classification using the modified TICS. After accounting for demographics, spousal caregiver availability, health factors, and socioeconomic status, caregiving receipt was associated with two-fold odds of MH utilization, compared to receiving no assistance (8,839 person-year observations; OR = 2.02; 95% CI 1.54–2.65) and remained similar following VA policy changes to enhance MH access. Exploratory analyses revealed that categories of cognition and depressive symptoms may moderate the association. Receipt of any in-home caregiving is associated with increased likelihood of MH use by older adults. Caregivers may represent an underutilized resource to reduce age-related mental health access disparities. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
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33. Examining Differences in Health-Related Technology Use between Millennial and Older Generations of Caregivers.
- Author
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Gallagher, Virginia T., Reilly, Shannon E., Martin, David, Manning, Carol, and Shaffer, Kelly M.
- Abstract
Background/Objective: Caregivers from the Millennial generation are an emerging and understudied group of unpaid care providers in America who may benefit from digitally delivered support. To inform the design/tailoring of interventions for this group, we aimed to understand how Millennials may differ from other generations of caregivers regarding digital health-related technology use. Methods: Using the Health Information National Trends Survey (HINTS), Version 6, we conducted a cross-sectional study comparing health technology access and use across four generations of unpaid caregivers (n = 545; Millennials, Gen X, Baby Boomers, and Silent Generation) of adults with chronic conditions using chi-square and Kruskal–Wallis non-parametric tests. Results: Compared to Baby Boomer and Silent Generation caregivers, Millennial caregivers more frequently reported having a cellular internet connection, using a wearable activity device, a health/wellness mobile application, choosing telehealth appointments for convenience, and most frequently used social media in general and to view health-related videos (ps < 0.005). Additionally, Millennials were more likely to report possessing a smartphone (compared to Gen X and Silent Generation) and more frequently used social media for peer interaction about health (compared to all older generations; ps < 0.005). Conclusion: Millennials differ from older generations of caregivers regarding health-related technology access and use, which may have implications for intervention design and tailoring. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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34. Unconditional Love, Some Implications for the Law.
- Author
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Allen, Anita L
- Subjects
SOCIAL services ,INDIVIDUALS' preferences ,PRISON visits ,SOCIAL responsibility ,ADULT children ,ABORTION laws - Abstract
Love is a rich topic for recent moral philosophers, theologians, writers and social justice activists. Yet, normative concepts of love embedded in modern law are seldom closely examined by legal theorists. This article is the first to illustrate that the concept of unconditional love plays significant roles across diverse areas of the positive law. Relying on a stipulated ethical understanding of unconditional love as a durable, constant, loyal, faithful, generous and self-sacrificing love, I demonstrate that, for better or worse, law can serve unconditional love's paramount demands. Significant categories of contemporary legal regulation are explicable to the communities bound by them because the evocative notion that some familial love is and ought to be 'unconditional' is socially pervasive. I do not advocate for the problematic concept of unconditional love but demonstrate that the law embeds it in two ways. One way is by affording opportunities for individuals voluntarily to exercise the felt imperatives of unconditional love (eg through prison visitation rights and spousal testimonial privileges). The other is by imposing duties of unconditional love that may run strongly counter to individuals' choices and preferences (eg by restricting access to safe abortion and requiring parental support of adult children). I suggest that derelict and gender-biased governments may shun their own social welfare responsibilities by imposing on private individuals caregiving duties that bespeak unconditional love. Attention to the powerful unconditional love concepts embedded throughout the law can foster an improved understanding of the norms and politics of marriage and family governance. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
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35. Engagement in Physical Activity and Quality of Life Among Informal Caregivers of Older Adults.
- Author
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A'Azman, Shamirah, Sung, Pildoo, and Malhotra, Rahul
- Subjects
ELDER care ,RESEARCH funding ,MULTIPLE regression analysis ,MULTIVARIATE analysis ,SERVICES for caregivers ,BURDEN of care ,QUALITY of life ,SOCIAL networks ,PSYCHOLOGICAL stress ,SOCIAL participation ,PHYSICAL activity ,PSYCHOSOCIAL factors - Abstract
Objectives: This study examined (1) the association of caregiver engagement in physical activity (PA) with their quality of life (QoL) and (2) the moderating effect of caregiver engagement in PA on the relationship between several caregiving stressors and their QoL, among informal caregivers of older adults. Methods: Multivariable regression was applied to data from 278 adult caregivers, aged 23–90 years, in Singapore. Results: Engagement in PA by caregivers was positively associated with psychological, social relationships, and environment domains of their QoL. Caregiver engagement in PA also mitigated the negative association between care-recipient mood impairment and QoL of caregivers in the physical health and social relationships domains. Discussion: QoL of caregivers may be improved or protected by their regular engagement in PA, especially when their care-recipients have mood impairment. Policymakers and practitioners should encourage caregivers to engage in PA and provide them with the necessary support to do so. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
36. Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.
- Author
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Seshadri, Sandhya, Contento, Angela, Sugiura, Kei, Abendroth, Maryann, Macchi, Zachary, and Kluger, Benzi M.
- Abstract
Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving. Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving. Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16). Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes. Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress. Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management ; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth. Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
37. The Experience of Emerging Adult Daughters Caring for a Parent With Advanced Disease.
- Author
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Tong, Eryn, Nissim, Rinat, and Goldstein, Abby L.
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ADULT children ,CAREGIVERS ,CARING ,PARENTS ,DISEASES - Abstract
Caring for a parent during emerging adulthood may be a disruptive and non-normative experience. Despite the growing prevalence of emerging adult (EA) caregivers, there remains limited research. We explored the experiences of EAs caring for parents living with advanced disease. Interviews were conducted with 12 EA daughters and analyzed using constructivist grounded theory. The core category was identified as negotiating accelerated adulthood, a dynamic interplay between feeling more of an adult than before and the paradoxical feeling of I'm not where I should be. Prior to the core category, participants' caregiving role is assumed. Availability of support influenced participants' process of negotiating accelerated adulthood. Findings highlight the uniqueness and developmental impact of this experience. Results suggest an interplay of different factors with how the role is assumed, appraised, and experienced by EA daughters. Greater awareness of these experiences may inform the development of tailored interventions and strategies for EA caregivers. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
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38. Mary Main’s concept of conditional strategies: influences on studies of child–parent and adult romantic attachments.
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Cassidy, Jude, Stern, Jessica A., Mikulincer, Mario, and Shaver, Phillip R.
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- *
AGE groups , *ADULTS , *INFANTS , *CLINICAL medicine , *ADOLESCENCE - Abstract
Among Mary Main’s many vital contributions to the field of attachment is the idea that human infants develop adaptive
conditional strategies in the service of maintaining proximity to a secure base in light of a particular caregiving history. In this tribute paper, we describe Main’s original theorizing, which delineated three types of conditional strategies: a primarysecure base strategy and two secondary strategies ofminimizing ormaximizing the naturally occurring output of the attachment behavioral system, using a variety of cognitive, affective, and behavioral means. We review the large body of evidence for minimizing and maximizing strategies in infancy, childhood, adolescence, and adulthood. Across a range of studies – including age groups and methodologies extending well beyond Main’s original work with infants – there is remarkable convergence of findings that support Main’s ideas. We conclude with several promising directions in implementing Main’s groundbreaking ideas to enrich future research and clinical applications. [ABSTRACT FROM AUTHOR]- Published
- 2024
- Full Text
- View/download PDF
39. Psychological distress in Asian American informal caregivers: an analysis by disaggregated ethnic groups.
- Author
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Qi, Xiang, Wang, Katherine, Pei, Yaolin, Ðoàn, Lan N., Yi, Stella S., and Wu, Bei
- Subjects
- *
ASIAN Americans , *ASIANS , *PSYCHOLOGICAL distress , *PSYCHOLOGICAL well-being , *CAREGIVERS - Abstract
Background: Despite Asians being the fastest-growing ethnic group in the US, most studies have focused on Asian Americans as an aggregate racial/ethnic group. The burden of mental health problems is increasing among caregivers due to population aging, yet little is known about the distress experienced by Asian caregivers when examined by disaggregated ethnic groups. Methods: Using 2019–2020 California Health Interview Survey data, we examined disparities in psychological well-beings between non-Hispanic White and Asian American adult caregivers, with an emphasis on understudied Asian ethnic groups. Psychological distress was measured using the Kessler 6 scale, with scores ≥6 indicating mental distress and ≥13 indicating serious mental illness. Multivariable logistic regression adjusted for socio-demographics, physical health, caregiving relationship, intensity of care, and care recipients’ characteristics. Results: The study included 8,722 caregivers (mean age, 58.7 years; 61.3% women; 14.1% Asian [379 Chinese, 260 Filipino, 167 Japanese, 138 South Asian, 105 Korean, 101 Vietnamese, 78 other Asian], 85.9% White). Overall, 26.8% had mental distress, and 8.5% had serious mental illness. Compared to White caregivers, Korean American caregivers had higher odds of mental distress (Odds Ratio [OR], 2.37; 95% CI, 1.47–3.82) and serious mental illness (OR, 2.15; 95% CI, 1.17–3.92), while Chinese (OR, 0.72; 95% CI, 0.55–0.95) and Japanese (OR, 0.67; 95% CI, 0.45–0.99) American caregivers had lower odds of mental distress. Korean American caregivers had the highest prevalence of mental distress (43.1%) and serious mental illness (15.3%), compared with White and other Asian American caregivers. Conclusion: Disaggregating data reveals significant mental health disparities among ethnic subgroups of Asian American caregivers. Tailored resources should address the distinct needs of ethnic subgroups of Asian American caregivers, considering language barriers, acculturation, and cultural norms that may exacerbate psychological distress. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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40. Including Families in a Response to the Unregulated Toxic Drug Crisis: A Call to Action.
- Author
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Mathias, Holly, Auger, Sarah, Schulz, Petra, and Hyshka, Elaine
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- *
DECISION making , *BEREAVEMENT , *FAMILIES , *GRIEF , *PUBLIC health - Abstract
AbstractThe unregulated toxic drug crisis continues to be an urgent health issue in North America. Many families of people who use drugs have been significantly impacted by this issue. In addition to the thousands of North Americans who have been bereaved by drug mortality, many families are providing unpaid care to bridge gaps in services while navigating the grief and stress associated with caring for a loved one amidst a heavily politicized and rapidly changing context. Despite the impact on families, few interventions are in place to lessen the burden of the crisis. This commentary presents a call to action to include families of people who use drugs in a public health response to the toxic drug crisis. We emphasize the need for (1) the consideration and involvement of families in all aspects of policy and program decision making, (2) the recognition of families of people who use drugs within national caregiving and bereavement strategies; (3) increased supports and services for families; and (4) additional research and public health monitoring on the impact of the toxic drug crisis on families. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
41. Experiences of caregivers of patients with noncancer diseases readmitted to an emergency department at the end of life.
- Author
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Amado-Tineo, Jose, Oscanoa-Espinoza, Teodoro, Loli-Ponce, Rudi, and Delgado-Guay, Marvin Omar
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HOME care services , *QUALITATIVE research , *PALLIATIVE treatment , *RESEARCH funding , *PATIENT readmissions , *INTERVIEWING , *HEALTH , *HOSPITAL admission & discharge , *HOSPITAL emergency services , *EMOTIONS , *INFORMATION resources , *DESCRIPTIVE statistics , *EXPERIENCE , *CHRONIC diseases , *THEMATIC analysis , *FRUSTRATION , *CLINICAL deterioration , *LOVE , *SPIRITUALITY , *TERMINALLY ill , *PHENOMENOLOGY , *DATA analysis software , *CAREGIVER attitudes , *HEALTH care rationing , *PATIENT aftercare , *COVID-19 pandemic , *SUFFERING , *HOPE - Abstract
Background: When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America. Methods: We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4. Results: Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient's problems, and "insensitive" treatment by the staff. Some also expressed gratitude for "saving patient's lives." They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that "they were ignored." When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients' progressive deterioration. As patients approached death, caregivers expressed that they tried to "give them all the love" and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for "a better place" after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end. Conclusion: Caregivers reported "traumatic" and "shocking" experiences during ED care, as well as conflict between wanting the patient's suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope. [ABSTRACT FROM AUTHOR]
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- 2024
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42. Family caregiving experiences of medical school faculty: high prevalence, high strain, and low resource awareness.
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Skarupski, Kimberly A., Roth, David L., and Durso, Samuel C.
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SERVICES for caregivers , *CAREGIVERS , *MEDICAL school faculty , *ALZHEIMER'S disease , *ADULTS - Abstract
Background: Adult caregiving can be demanding and stressful, especially when the caregiver is employed. As the age of the U.S. population and workforce increases, more adults are providing care to aging family members. Objective: To understand the prevalence and aspects of the caregiving experience and caregiving strain among department of medicine faculty members, and to gauge their awareness and utilization of caregiving resources. Design: We used a cross-sectional survey design. A questionnaire survey was developed and launched in Redcap in October, 2022, and an invitation was emailed followed by two reminders to all full-time and part-time faculty members (N = 1053) in our department of medicine. Main measures: Faculty demographics, caregiver status, caregiving details, degree of mental or emotional strain, and knowledge of and use of employer and external caregiver resources. Key results: Of the 1053 faculty members who received up to three email survey invitations, 209 (20%) responded of which 76 (36%) were current caregivers and 117 (56%) were non-caregivers. Among the 76 current caregivers, 53 (70%) reported providing care for parents or parent-in-laws and 9 (12%) reported caring for a spouse. One-third of current caregivers reported caring for individuals with Alzheimer's disease or dementia/memory problems. Ninety-five% of current caregivers reported some or a lot of caregiving strain. A wide variation in knowledge of and use of employer and external caregiver resources was reported. Conclusions: Department of medicine faculty who provide adult caregiving report a high prevalence of strain and wide variation in knowledge of and use of employer and external caregiver support services, suggesting opportunity to better understand where gaps exist in providing support for caregivers. [ABSTRACT FROM AUTHOR]
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- 2024
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43. Caregivers' cognitions about infants' mental and emotional states.
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Garon‐Bissonnette, Julia, Bailes, Lauren G., Kwasneski, Kate, Lempres, Sarah, Takemoto, Sydney, Li, Lu, DeLuca, Julia, Salo, Virginia C., and Humphreys, Kathryn L.
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CAREGIVER attitudes , *CHILD behavior , *COGNITIVE development , *CAREGIVERS , *CHILD development - Abstract
Given the relevance of caregivers' perceptions, cognitions, and emotions about their child's mental states for caregiving behavior and children's development, researchers from multiple theoretical perspectives have developed constructs to assess caregivers' cognitions, resulting in a large but scattered body of literature. In this article, we highlight the conceptual overlap among and uniqueness of six constructs assessing caregivers' cognitions about their child at 36 months and younger: infant intentionality, mental representations, mind‐mindedness, parental embodied mentalizing, parental empathy, and parental reflective functioning. We define constructs, present approaches to measurement, and propose elements of importance that fall under the umbrella of caregivers' cognitions and that may be associated differentially with children's early cognitive and social–emotional development. We conclude with recommendations for researchers aiming to capture caregivers' cognitions about their child's mental states, whether focusing on one of the six reviewed constructs or on specific elements (e.g., awareness of the child's mind or accuracy of caregivers' perceptions of their child) under the umbrella of caregivers' cognitions. [ABSTRACT FROM AUTHOR]
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- 2024
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44. Learning to care on one's own: Chinese children's caregivers' reflections on family care.
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Zhang, Xue, Madureira Ferreira, Juliene, Liu, Jianjin, Zhang, Qian, and Midgette, Allegra
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FAMILY structure , *FILIAL piety , *HOUSEKEEPING , *CHINESE people , *CAREGIVERS , *GRANDPARENTS - Abstract
Background Objective Method Results Conclusion Implications The past few decades have witnessed drastic changes in family structures and the provision of care within the family in China.The current study investigated how familial caregivers of children (N = 30, Mage = 41.67, SD = 11.32) living in one of the largest urban centers in China learned and taught how to care within the family.Nine focus groups were conducted to collect data, and thematic analysis was adopted to analyze the data.Two main themes were found: (a) learning to care on one's own and (b) the importance of encouraging one to want to care. The findings indicate that Chinese caregivers received limited direct instruction in learning how to care and were often faced with the challenge of having to self‐teach care. Meanwhile, when teaching care, caregivers focused on the motivation to care (e.g., filial piety) as an important element for learning to practice care.These findings highlight considerations of motivation of care often not mentioned in the Western literature while also indicating the need of society to support teaching and learning the practice of care within the family.This study highlights the importance of cultural considerations when designing intervention programs to help individuals to develop the ability to care and provides insights exploring how school‐family partnership promotes children's ability to be caring. [ABSTRACT FROM AUTHOR]
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- 2024
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45. Adult children's responsiveness to parental needs during the pandemic.
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Lin, I‐Fen, Wiemers, Emily E., Chin, Janecca A., Strauss, Anna Wiersma, Seltzer, Judith A., and Hotz, V. Joseph
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ADULT children , *INTERGENERATIONAL relations , *GROCERY shopping , *FOOD security , *NONRESIDENTS , *PARENT-adult child relationships - Abstract
Objectives Background Method Results Conclusion Guided by the life‐course principles of linked lives embedded in historical time and place, we investigated whether nonresident adult children provided financial and time assistance to parents in response to their needs during the COVID‐19 pandemic.Adult children are an important source of support for older adults during crises, yet their ability to help parents may have been constrained during the pandemic.Data were extracted from the 2016, 2018, and 2020 waves of the Health and Retirement Study. We employed three analytic strategies. First, we examined how nonresident adult children responded to parental needs during the pandemic. Second, we compared the financial and time assistance received during the pandemic with earlier periods. Third, we assessed whether support patterns varied depending on the severity of the pandemic in places where parents lived. All analyses used linear probability models, adjusting for pre‐pandemic characteristics.Parents facing economic hardship more often received money help and those experiencing difficulty buying food for nonfinancial reasons more often received time help from adult children compared to those without such challenges. Moreover, both financial and time assistance from adult children increased during the pandemic compared to pre‐pandemic levels. Hardships increased the probability of receiving money and time help from adult children when parents lived in areas with a high level of pandemic severity.Adult children became more responsive to parental needs during the COVID‐19 pandemic, underscoring the importance of linked lives across generations during times of crisis. [ABSTRACT FROM AUTHOR]
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- 2024
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46. Assessing Foodservice Management: A Study of Social Homes in Palangka Raya, Indonesia.
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Anden, Dhini, Munifa, Maulia, Resna, and Al Mamun, Abdullah
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FOOD service management , *NUTRITIONAL requirements , *NUTRITIONAL status , *MENU planning , *FOOD consumption - Abstract
Introduction: Effective foodservice management in social homes and orphanages is vital for ensuring residents' nutritional needs are met. Foodservice management in these establishments aims to provide balanced nutrition to residents. This study aimed to assesses the effectiveness of foodservice management by evaluating input, process, control, environment, and output (food intake, macro nutrition intake, and nutritional status) in social homes. Materials and methods: A cross-sectional study was conducted in two social homes from June to October 2023. Both social homes (A and B) are located in Palangka Raya City of Indonesia and administered by provincial government and church, respectively. Results: Office hours at home A and B in a week took about 30-45 hours, falling short of standard requirements. Funds in home A complied with regulations, while those in home B did not meet governmental standards. Human resources in both homes lacked hygiene and sanitation training. Ingredient supplies were insufficient due to a lack of policy governing foodservice management, particularly regarding menu cycles. Despite the absence of menu planning, employees engaged in purchasing, storage, preparation, processing, and distribution activities. Sanitation practices appeared neglected. Average adolescent energy nutrient intake in both homes fell below Indonesia's recommendations, except for protein intake in home B. Nutrition status in home A reflected a 15.4% prevalence of thinness, with the majority having a normal status (69.2%). Home B demonstrated better nutrition status, with 90.4% of residents classified as normal and 9.6% as obese. Conclusion: The implementation of foodservice management, encompassing input, process, control, environment, output, and outcome, was found to be inadequate in both homes, necessitating further evaluation. [ABSTRACT FROM AUTHOR]
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- 2024
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47. Family Care Partner's Preparedness in Caring for Hospitalized Persons With Dementia.
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Paudel, Anju, Al Harrasi, Azza Mubarak, Kuzmik, Ashley, Berish, Diane, Yahaya, Ahmed‐Rufai, and Boltz, Marie
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PSYCHOLOGICAL resilience , *RESEARCH funding , *HOSPITAL care , *HUMANITY , *DISCHARGE planning , *PATIENT care , *AGE distribution , *PSYCHOLOGICAL adaptation , *EMOTIONS , *SERVICES for caregivers , *FAMILY attitudes , *BURDEN of care , *PSYCHOLOGICAL stress , *FAMILY support , *DEMENTIA patients , *TIME , *CAREGIVER attitudes , *MENTAL depression - Abstract
Objectives: To examine care partner preparedness in caring for recently hospitalized persons with dementia and care partner characteristics associated with preparedness at discharge, 2 months, and 6 months post discharge. Methods: Stepwise regression in a sample of 461 care partners of hospitalized persons with dementia who participated in the Fam‐FFC clinical trial. Results: On average, care partners were 61.81 years old (SD = 14.19) and primarily female (n = 334, 72.5%). Care partners reported having some preparedness in general and it increased from discharge (23.75, SD = 6.78) to 2 months (24.5, SD = 6.49) and 6 months (26.35, SD = 6.73). Multiple care partner characteristics were associated with preparedness at discharge [age (b = −0.071; p < 0.001), burden (b = −0.283; p < 0.001), and depression (b = −0.284; p < 0.01)], 2 months [burden (b = −0.226; p < 0.001), strain (b = −0.144; p < 0.05), depression (b = −0.185; p < 0.05)] and 6 months [burden (b = −0.164; p < 0.01), strain (b = −0.183; p < 0.05), depression (b = −0.279; p < 0.01)] post discharge. While care partners' feelings of greater burden and depression were associated with lower preparedness at all time points, care partners' higher age was associated with lower preparedness at discharge only and care partners' feelings of higher strain was associated with lower preparedness at two and 6 months post discharge. Conclusion: Findings suggest the need to address care partners' feelings of burden, strain, and depression with tailored interventions and programs to optimize their preparedness in meeting unique care needs of hospitalized persons with dementia. Resilience‐based interventions and programs can be useful to manage feelings of burden, strain, and depression and optimize preparedness. [ABSTRACT FROM AUTHOR]
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- 2024
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48. Balancing Duty, Stigma, and Caregiving Needs of People With Neurodevelopmental or Neurocognitive Disorders During a Public Health Emergency in South Asia: A Qualitative Study of Carer Experiences.
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Tjin, Anna, Goodwin, Anna, Troy, Carol, Yeo, Selvie, Saha, Sanjib, O'Sullivan, Roger, Leroi, Iracema, and Chen, Yaohua
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CHILD psychopathology , *QUALITATIVE research , *RESEARCH funding , *DESCRIPTIVE statistics , *CAREGIVERS , *EXPERIENCE , *SURVEYS , *THEMATIC analysis , *COGNITION disorders , *MEDICAL emergencies , *NEEDS assessment , *PUBLIC health , *SOCIAL stigma , *COVID-19 pandemic - Abstract
Objective: Individuals with neurodevelopmental and/or neurocognitive disorders (NNDs) have complex, long‐term care needs. In Bangladesh, India, and Pakistan, informal carers shoulder the responsibility and strain of providing care for people with NNDs. Intense care demand, societal and cultural care expectations, and lack of support infrastructure often lead to psychosocial strain in this inadequately researched community, particularly during crises such as the COVID‐19 pandemic. This study explored and identified specific features of the coping styles exhibited by informal carers of people with NNDs from Bangladesh, India, and Pakistan during the COVID‐19 pandemic. Material and methods: Between June and November 2020, 245 carers in India, Pakistan, and Bangladesh responded to open‐ended questions in the CLIC (Coping with Loneliness, Isolation, and COVID‐19) survey. A reflexive thematic analysis was conducted to uncover the underlying themes and identify coping strategies and stressors. A frequency analysis was performed to examine the associations between these themes and carer nationality. Significant tests identified coping styles. Results: We identified three coping styles: religiosity (Pakistan), caregiving as a natural life path (Bangladesh), and self‐care (India). The religiosity and natural life path styles reside on the fatalism/acceptance continuum and suggest an insight‐oriented therapeutic approach. Self‐care is a problem‐solving strategy that calls for a behaviorally oriented approach. Family overreliance on the carer was a concern across all three groups. Conclusions: The findings underscore the need for accessible support pathways to sustain care standards, ensuring the well‐being of carers and care recipients. [ABSTRACT FROM AUTHOR]
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- 2024
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49. Predictors of mental well-being among family caregivers of adults with intellectual and developmental disabilities during COVID-19.
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Mendoza, Olivia, St. John, Laura, Tarzi, Gabriel, Thakur, Anupam, Lake, Johanna K., and Lunsky, Yona
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CAREGIVERS , *PEOPLE with intellectual disabilities , *COVID-19 - Published
- 2024
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50. "What choice do we have?" Reactive and proactive decision‐making for aging in place with dementia.
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Auriemma, Catherine L., Butt, Maayra I., McMillan, Julia, Silvestri, Jasmine A., Chow, Carolyn, Bahti, Melanie, Klaiman, Tamar, Harkins, Kristin, Karlawish, Jason, and Halpern, Scott D.
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FAMILIES & psychology , *PSYCHOLOGY of physicians , *PATIENTS' families , *FEAR , *MEDICAL personnel , *QUALITATIVE research , *RESEARCH funding , *PATIENT safety , *PATIENT-family relations , *INTERVIEWING , *CONTENT analysis , *DECISION making , *DECISION making in clinical medicine , *DESCRIPTIVE statistics , *CAREGIVERS , *THEMATIC analysis , *AGING in place , *RESEARCH , *RESEARCH methodology , *TRUST , *PSYCHOLOGY of caregivers , *PHYSICIANS , *DEMENTIA patients , *RESIDENTIAL care - Abstract
Background: Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision‐making to age in place versus seek a higher level of residential care for PWD. Methods: A qualitative study was undertaken as part of a larger mixed‐methods study utilizing semi‐structured interviews with PWD, family care partners, and dementia clinicians. Interview transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within subgroups. Results: We conducted 74 interviews among 14 PWD, 36 care partners, and 24 clinicians. Preferences for AIP were driven by (1) desire to preserve independence, (2) a sense that the "best care" is delivered by loved ones and in a familiar environment, (3) distrust and fear of care facilities, and (4) caregiver guilt. PWD and care partners frequently considered moving from home as a "last resort" and wanted to avoid planning for future care needs. Many decisions to move were reactive and triggered by patient safety events, physical dependency, or the loss of caregiver. Proactive decision‐making was facilitated by (1) prior experience witnessing the challenges of caring for a person with advanced dementia in the home; and (2) having substantial financial resources such that participants could seek major home adaptations or avoid "lower quality" institutions. Conclusions: Decisions regarding care setting for PWD frequently do not feel like a choice and are made under imperfect conditions. Programs using AIP as an outcome measure should recognize the various patient‐centered and non‐patient‐centered factors that influence such choices, and interventions should be designed to promote more informed and equitable decision‐making for care setting in dementia. [ABSTRACT FROM AUTHOR]
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- 2024
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