Journal articles on the topic 'Emotional caregiving'
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Camacho, David. "Blurring boundaries: An emotionally aware caregiver, social worker, and researcher." Qualitative Social Work 15, no. 5-6 (August 1, 2016): 682–95. http://dx.doi.org/10.1177/1473325016652682.
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In this article, I illustrate lived experiences within my roles as caregiver, clinical social worker, and researcher. Empirical attention has focused on the emotional toll of caregiving and management of emotions as clinical social workers, however, little attention has been given to the impact emotions have on the researcher and how emotional awareness can be useful in the creation of knowledge. Using a personal reflexive account, I “out” myself as an emotionally aware caregiver, clinical social worker, and researcher. Finally, I provide examples of how to incorporate emotion into the research process.
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Scogin, Forrest, Gretchen Stephens, Jerry Bynum, Lorin A. Baumhover, Colleen Beall, and N. Philip Grote. "Emotional Correlates of Caregiving." Journal of Elder Abuse & Neglect 4, no. 4 (April 15, 1993): 59–70. http://dx.doi.org/10.1300/j084v04n04_06.
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Hua, Alice Y., Jenna L. Wells, Casey L. Brown, and Robert W. Levenson. "Emotional and Cognitive Empathy in Caregivers of People With Neurodegenerative Disease: Relationships With Caregiver Mental Health." Clinical Psychological Science 9, no. 3 (March 19, 2021): 449–66. http://dx.doi.org/10.1177/2167702620974368.
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Caregiving for a person with dementia or neurodegenerative disease is associated with increased rates of depression and anxiety. As the population ages and dementia prevalence increases worldwide, mental health problems related to dementia caregiving will become an even more pressing public health concern. In the present study, we assessed emotional empathy (physiological, behavioral, and self-reported emotional responses to a film depicting others suffering) and two measures of cognitive empathy (identifying the primary emotion experienced by another person and providing continuous ratings of the valence of another person’s changing emotions) in relation to mental health (standard questionnaires) in 78 caregivers of people with dementia or neurodegenerative disease. Greater emotional empathy (self-reported emotional responses) was associated with worse mental health even after accounting for known risk factors. Neither measure of cognitive empathy was associated with mental health. A relationship between high levels of emotional empathy and poor mental health in caregivers suggests possible risk indicators and intervention targets.
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Hickman, Ruby, Maria Anna Zdrodowska, Sarah Kellner, Tess E. K. Cersonsky, Daniel Trujillo Diaz, Elan D. Louis, and Joan K. Monin. "The “Caring Giver”: Emotional Caregiving in the Setting of Essential Tremor." Research on Aging 42, no. 2 (December 4, 2019): 83–91. http://dx.doi.org/10.1177/0164027519890132.
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Introduction: Essential tremor (ET) is a common neurological disorder associated with functional impairment. Emerging evidence shows that some ET caregivers experience burden, but the unique interpersonal aspects of caregiving in the context of ET have not been fully examined. Research design: Open-ended questions were administered to 98 ET care-recipient–caregiver dyads. Responses were analyzed using conventional content analysis. Results: The unique visibility of disability and feelings of embarrassment that occur with ET prompts caregivers to be highly attuned to care-recipient emotions. Providing companionship, promoting independence, and reducing embarrassment are three themes we found that describe the ET caregiving experience. Discussion: Caregiving in ET often goes beyond aiding with activities of daily living; it has a significant emotional component especially in relation to independence and embarrassment. Future studies on caregiving in ET and conditions in which disability is visible should consider using a definition of caregiving that includes emotional caregiving.
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Wang, Fei, and Ann W. Nguyen. "CORRELATES OF FAMILY CAREGIVING FOR OLDER ADULTS AND EMOTIONAL STRAIN AMONG AFRICAN AMERICANS." Innovation in Aging 3, Supplement_1 (November 2019): S514. http://dx.doi.org/10.1093/geroni/igz038.1897.
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Abstract Objectives: Despite the growing older African American population and its increasing needs for informal care, few caregiving studies have focused specifically on African Americans. This study aims to 1) identify demographic correlates of caregiving for older family members among African Americans and 2) identify caregiving and demographic correlates of emotional strain among African American caregivers. Method: Logistic regression and linear regression were based on the African American sub-sample of the 2015 Caregiving in the U.S. Survey (N=260). Demographic characteristics included age, gender, education, income, marital status, co-residence of care recipient in the caregiver’s home, relationship of care recipients to caregivers, and household size. Caregiving characteristics included hours of caregiving and whether respondents provide care for an older adult. Results: With respect to demographic correlates of family caregiving, older respondents were more likely to provide care for an older family member, and respondents were more likely to provide care to a parent/parent-in-law than to other relatives. Regarding emotional strain, age and household size were negatively associated with emotional strain, and hours of caregiving was positively associated with emotional strain. Discussion: This study identified demographic profiles of family caregiving and emotional strain. It also suggested the presence of unique risk and protective factors among older African American caregivers. Future research should test the underlying mechanisms between these factors and mental health outcomes for a better understanding of how caregiving strain can be attenuated.
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Iancu, Andreea Elena, and Cosima Rughiniș. "Emotional socialization and agency: Representations of coping with old age dementia and Alzheimer’s in graphic novels." Sociologie Romaneasca 20, no. 1 (June 30, 2022): 69–107. http://dx.doi.org/10.33788//sr.20.1.4.
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This research investigates representations of emotion work and emotional labor in caregiving, in the medium of graphic novels. The study is based on a collection of six contemporary graphic novels that discuss the relationships between older adults who are suffering from dementia or Alzheimer’s and their family caregivers and professional caretakers. Family caregivers are caught in a complicated web of family relationships and new, emerging caregiving roles. We rely on thematic content analysis to identify the main forms of emotional agency, structural constraints and trade-offs in family and professional situations. Emotional agency in caregiving is portrayed as situated, though emerging from divergent definitions of the situations for caretakers and patients; it is embedded in the family system, which is contrastively portrayed with the procedural, less empathic medical institution, and also with the general mass media portrayal of old age. Graphic novels contribute to the emotional socialization of people anticipating situations of suffering, or caring for mental disorders associated with old age.
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Ihara, Emily, Catherine Tompkins, William Kennedy, Rhea Vance-Cheng, Bianca Kwan, and Kendall Barrett. "Emotional Experiences of Dementia Caregiving Transitions." Innovation in Aging 4, Supplement_1 (December 1, 2020): 72. http://dx.doi.org/10.1093/geroni/igaa057.236.
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Abstract Research indicates that family caregivers of individuals living with dementia are at risk for high levels of stress, depression, physical health declines, and illness. The health and well-being of family caregivers is critically important to a long-term care system that is dependent on them to continue their caregiving role. In-depth individual and focus group interviews of 16 dementia caregivers were conducted to explore the emotional experiences of caregiving stress during transitions of individuals living with dementia to a higher level of care. Data were transcribed verbatim, checked for accuracy, and analyzed by at least two members of the research team. Line-by-line coding, memo writing, and constant comparative analyses were conducted until redundancy, when no new themes were discovered. Caregivers described various levels of feeling overwhelmed and symptom progression leading to the move to a nursing facility. Social isolation featured prominently, with caregivers describing a gradual erosion of their social network and socializing opportunities because of their caregiving responsibilities and the care recipient’s deteriorating symptoms. Caregivers described feeling isolated and stigmatized. One caregiver said, “…you’re being less invited, you’re being less involved. People don’t know how to deal with you…I don’t know if they become the pariah or I become the pariah.” At the same time, maintaining social connections and having help with caregiving featured prominently in the coping mechanisms described. The health of caregivers is equally as important as the person living with dementia, and programs, interventions, and resources should be a priority for supporting families through transitions.
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Lee, Jeongeun, and Nicholas Cone. "Caregiving Appraisals and Emotional Valence: Buffering Effect of Activity Participation." Innovation in Aging 5, Supplement_1 (December 1, 2021): 53. http://dx.doi.org/10.1093/geroni/igab046.203.
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Abstract Caregiving activities often lead to positive and negative appraisal for caregivers. Caregivers may limit social participation due to caregiving activities. Changes in level of activity participation could have profound consequences for caregiver’s valence. However, little is known about how activity participation could moderate the association between these caregiving appraisals and emotional valence. Data came from the National Study of Caregiving (Round 1 and 2), a nationally representative study of caregivers. Referencing Lawton’s two-factor model (1990), we examined both the level and changes in activity restriction interacting with positive and negative caregiving appraisals to predict both valence across two waves. Consistent with two factor models, findings revealed level and changes in activity restriction moderated the relationship between caregiving appraisal and outcomes for both valences. These findings highlight the role of activity restriction as a target to reduce negative valence and improve positive valence for caregivers.
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Hu, Rita X., Lydia Li, and Toni C. Antonucci. "TRANSITIONING OUT OF GRANDCHILDREN CAREGIVING: EFFECTS ON GRANDPARENTS’ EMOTIONAL WELL-BEING." Innovation in Aging 3, Supplement_1 (November 2019): S280—S281. http://dx.doi.org/10.1093/geroni/igz038.1037.
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Abstract Research has suggested that grandparents caring for grandchildren experience both psychological gains and loss. Less clear is what happens to these grandparents after they exit from the caregiving role. This study used the Health and Retirement Study (HRS) 2010 to 2014 data to examine the effects of transitioning out of caregiving on the psychological well-being of grandparents. Psychological well-being was measured by the Positive and Negative Affect Schedule. We defined caregiving grandparents as grandparents who provide 100+ hours of care per year to their grandchildren. In the first wave, 8,278 respondents in the HRS were identified as caregiving grandparents. Among them, 3,914 continued to be caregivers and 4,364 transitioned out of the caregiving role by indicating they are no longer providing care in the second wave. Grandparents who transitioned out of caregiving are more likely to be older in age, less educated and not married. Linear regression analysis was conducted to compare the two groups (continuing vs. exiting caregiving) on positive and negative affect, controlling for the first wave’s measures of the dependent variable, sociodemographic characteristics and health status of respondents. Results show that grandparents who continued caregiving had less decline in positive affect than grandparents who transitioned out of caregiving (b = -0.05, SE = 0.02, p<0.01), adjusting for covariates. But they were not significantly different in negative affect. These findings indicate that older adults may have fewer sources of joy after exiting the role of caregivers of their grandchildren.
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Krøjer, Jo. "Tillid: En emotionel relation i pædagogprofessionen." Tidsskrift for Professionsstudier 14, no. 26 (September 8, 2017): 34–43. http://dx.doi.org/10.7146/tfp.v14i26.110401.
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A new study explores how professional knowledge are shaped in the relation between pedagogues and parents in kindergartens. It is well known that the care work of professional pedagogues holds emotional aspects as in integrated part of professional, pedagogical know-how. Opposed to what you might think, these emotional aspects of pedagogues’ work in this study seems not to be exclusively related to caregiving for children, on the contrary: Emotions also arises from relations with parents. This article examines this unexpected finding. How come that relations between professional pedagogues and kindergarten parents are carrying such a heavy, emotional load? And what are the implications of this for the pedagogical profession? The relevance of these questions is to expand the understanding of emotional demands in professional, pedagogical work in institutional caregiving practices.
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Bell, David C. "Evolution of Parental Caregiving." Personality and Social Psychology Review 5, no. 3 (August 2001): 216–29. http://dx.doi.org/10.1207/s15327957pspr0503_3.
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Parental caregiving consists of a set of behaviors that has evolved to a high level among mammals and has been most developed among humans. In this article, I propose an evolutionary model of 4 changes (3 of them neurobiological) leading to caregiving. Two of the changes, including the emergence of a dyadic preference bond, occurred first among the reptile precursors to mammals. The dyadic preference bond is hypothesized to have preceded and facilitated the emergence of mammalian species through the subsequent emergence of mammary glands and live births. Somewhat later, the dyadic preference bond began to evolve into the complex, multifaceted parental caregiving system in humans. The evolutionary model of caregiving suggests a need to expand attention beyond cognitions, which are of major importance in humans as mechanisms of planning and implementing strategies, to include at least some emotional processes located in older parts of the brain that appear to follow a different, emotional logic. The model identifies a neurobiological basis for the emotional attraction of parent to child and the motivation to nurture. Further research is needed to translate these neurobiological processes into psychological models of caregiving.
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Roggman, Lori A., and J. Craig Peery. "Caregiving, emotional involvement, and parent‐infant play." Early Child Development and Care 34, no. 1 (January 1988): 191–99. http://dx.doi.org/10.1080/0300443880340114.
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Ali, Sidra, and Iram Zehra Bokharey. "Caregiving in dementia: Emotional and behavioral challenges." Educational Gerontology 42, no. 7 (February 19, 2016): 455–64. http://dx.doi.org/10.1080/03601277.2016.1156375.
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Templeman, Maureen E., Adrian N. S. Badana, and William E. Haley. "The Relationship of Caregiving to Work Conflict and Supervisor Disclosure With Emotional, Physical, and Financial Strain in Employed Family Caregivers." Journal of Aging and Health 32, no. 7-8 (May 17, 2019): 698–707. http://dx.doi.org/10.1177/0898264319848579.
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Objective: To determine whether employed family caregiver reports of caregiving to work conflict (CWC) are associated with emotional, physical, and financial strain, and whether organizational factors, including supervisor disclosure and caregiver-friendly workplace policies, attenuate these effects. Method: We examined 369 full-time employed caregivers of adults aged 50 years and above from the 2015 AARP and National Alliance for Caregiving population-based study, Caregiving in the United States, using ordinary least squares hierarchical regression and moderation analyses. Results: Regression analyses showed that caregiver reports of more CWC, in addition to disclosure of caregiving, were associated with greater emotional, physical, and financial strain after controlling for demographics and caregiving stressors, and workplace policies did not attenuate strain. Neither disclosure nor policies moderated the impact of CWC on caregiver strain. Discussion: Results suggest the importance of workplace strain in the caregiving stress process and suggest that disclosing caregiving responsibilities to supervisors should be closely examined.
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Cosper, Pamela Rose, and Cindy L. Moyer. "Physical and Emotional Impacts of the Caregiving Experience." Journal of Student Research 2, no. 1 (May 31, 2013): 9–16. http://dx.doi.org/10.47611/jsr.v2i1.140.
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Informal caregiving has become a widespread phenomenon, with family members and friends providing care for patients who have chronic or terminal illnesses and prefer to remain in their homes. The physical and emotional impacts of this unpaid work upon the caregiver can range from minor to severe. This study sought to identify qualities about the caregiving situation that may relate to the presentation of physical and/or emotional symptoms in the caregiver.
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Lopez–Anuarbe, Monika, and Priya Kohli. "Understanding Male Caregivers’ Emotional, Financial, and Physical Burden in the United States." Healthcare 7, no. 2 (May 22, 2019): 72. http://dx.doi.org/10.3390/healthcare7020072.
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Men caregivers face caregiving burden, have weak support networks and are less likely to seek out programs which increase their caregiving capabilities and help them cope with this burden. Using the 2011 and 2015 National Study of Caregiving (NSOC) database and hierarchical regressions, we studied the emotional, financial, and physical burden of male caregivers as spouses, sons, and other caregivers by assessing the impact of caregiver characteristics, tasks and resources for each subgroup. We highlighted the importance of using a nationally representative database for men caregivers only and emphasized that these caregivers are not a monolithic group. We found that all caregivers experienced these three burden types, particularly elevated emotional stress, with sons reporting the highest emotional and financial strain levels. Assisting with personal care was the most stressful task and caregivers vastly under-utilized support and training. Our results suggest that burden suppressants included having family and friends help with caregiving, having time to decompress, and feeling appreciated by the care recipient. These findings offer insight for devising future policies that intentionally include relationship and burden type to encourage improved and more caregiving from men while supporting their well-being.
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Lee, Gloria K., Katarina Krizova, and Carolyn M. Shivers. "Needs, strain, coping, and mental health among caregivers of individuals with autism spectrum disorder: A moderated mediation analysis." Autism 23, no. 8 (March 20, 2019): 1936–47. http://dx.doi.org/10.1177/1362361319833678.
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This study investigated the relationships among caregiving strain, coping, and mental health among caregivers of individuals with autism spectrum disorder (ASD) and the mediational moderation of caregiver needs. One hundred and ninety-three caregivers of individuals with ASD completed an online survey. Results showed that maladaptive coping behaviors were significant in mediating the relationship between strain and mental health. Professional service and emotional caregiving needs moderated the relationship between maladaptive coping and mental health at times of high caregiving strain, but not involvement, health information, and instrumental support needs. Results highlighted the negative effect of maladaptive coping, as well as professional service and emotional support needs were salient in moderating coping and mental health in times of high caregiving strain.
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Nikolaidou, Evdokia, Marianna Tsatali, Marina Eleftheriou, Helen Wang, Konstantina Karagiozi, Petrina Margaritidou, and Magdalini Tsolaki. "Emotional Function, Negative Thoughts about the Pandemic, and Adaptability Skills among Dementia Caregivers during the COVID-19 Pandemic." Brain Sciences 12, no. 4 (March 29, 2022): 459. http://dx.doi.org/10.3390/brainsci12040459.
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Background: It can be easily inferred that dementia caregivers were severely affected by the general home confinement, or ‘lockdown’, due to their caregiving roles. Aim: The aim of the current study is to investigate how the quarantine measures applied during the COVID-19 pandemic affected the emotional function (specifically the emotional management, emotional experience, and stress symptoms) and the negative thoughts, as well as the adaptability skills, of Greek dementia caregivers. Materials andMethods: In total, 303 participants (138 in the non-caregiving adults-control group; 165 in the dementia caregivers-experimental group) were recruited from the day centers of the Greek Association of Alzheimer Disease and Related Disorders (GAADRD) from June 2020 to January 2021 in Thessaloniki, Greece. The caregiving population was split into group 1 (those who participated in support groups) and group 2 (those who did not participate in support groups). A self-reported questionnaire was created for research purposes and was digitally administered to participants via Google forms. Results: During the quarantine period, dementia caregivers had more difficulties in emotional management, especially in regards to stress symptoms, which was measured via the Beck Anxiety Inventory (BAI), in comparison to the control group. In regards to the caregiving populations, caregivers from group 1 were more able to manage their emotions according to their self-reports, but had increased agony and loneliness. Moreover, statistical significance was found between emotional management, negative feelings, and stress symptoms in those from group 2 who self-reported that the PwD deteriorated. This evidence was not found in group 1. Finally, there were no differences in the means of negative thoughts about the pandemic, as well as in the adaptation skills, both in dementia caregivers and in the control group, according to their self-reports. Discussion: It seems that different emotional aspects were affected in the dementia caregivers’ population, and, therefore, future psychotherapeutic interventions should focus on those most severely affected by the restrictive measures imposed.
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Kerba, Marc, Shireen Kassam, Crystal Beaumont, Patricia Biondo, Madalene Earp, Patricia A. Tang, Jessica Simon, Sharon Watanabe, and Aynharan Sinnarajah. "Living with advanced colorectal cancer: How prepared are informal caregivers to care for their loved ones?" Journal of Clinical Oncology 37, no. 27_suppl (September 20, 2019): 179. http://dx.doi.org/10.1200/jco.2019.37.27_suppl.179.
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179 Background: The ‘Living with Colorectal Cancer’ prospective cohort study seeks to characterize the experiences of patients diagnosed with advanced colorectal cancer and their caregivers, in order to inform care improvements. Here we describe informal caregivers’ perceived preparedness for caregiving. Methods: Eligible patients were identified by oncologists in Alberta, Canada’s two tertiary cancer centers. Consenting patients were given the option to invite a caregiver to participate. Caregivers’ preparedness for caregiving was assessed at enrollment and every 3 months thereafter using the Preparedness for Caregiving survey. This survey assesses levels of preparedness using 5-point Likert scales for 8 caregiving domains (e.g. caring for the patient’s physical and emotional needs, finding and setting up services, stress of caregiving, responding to emergencies), and one open-ended question. Results: In one year of recruitment, 55 caregivers in Calgary and Edmonton were enrolled, of which 65% were female, and 80% lived with the patient. Caregiver preparedness decreased over time from months 1 to 7 of follow-up, across all categories. Caregivers were least prepared for the stress of caregiving and caring for the patient’s emotional needs. They were most prepared for taking care of the patient’s physical needs at enrollment. Open-ended comments on specific preparedness needs were numerous and extensive. A range of topics were reported, the top three being: caregiver health (physical, mental, self-care), emotional aspects (preparing children and family, feeling alone) and end of life (hospice, palliative care, transitioning). Conclusions: Our data suggest that in the advanced cancer setting, caregiver perceived preparedness declines, with increasing stress and emotional distress over time. This may be related to patient illness progression. The open-ended qualitative comments on the Preparedness for Caregiving survey were particularly useful in understanding specific caregiver concerns. Caregiver experience, including sense of preparedness, is often under evaluated and this study suggests more attention is needed. Clinical trial information: NCT03572101.
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Wang, Yang, Yihan Wang, Florian Kohlbacher, and Ernest Gonzales. "PRODUCTIVE ACTIVITIES AND LONELINESS AMONG JAPANESE MIDLIFE AND OLDER ADULTS." Innovation in Aging 3, Supplement_1 (November 2019): S827. http://dx.doi.org/10.1093/geroni/igz038.3049.
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Abstract Background: Loneliness among older population is a public health concern shared worldwide. Using the motivational theory for life-span development, this study examined the associations between loneliness (social and emotional) and productive activities among midlife and older adults in Japan. Methods: The Japanese National Data on Lifestyle and Mental Health, a nationally representative sample of midlife and older adults (2011, N=1,575), were used to examine how employment, volunteering, helping family and friends, and informal caregiving was associated with social and emotional loneliness, controlling for multiple risk and protective factors. Results: Family caregiving was related to more social loneliness. Working, helping family, and volunteering were related to less emotional loneliness, while family caregiving was related to more emotional loneliness. Japanese male caregivers reported more social isolation compared to female caregivers. Face-to-face interactions reduced emotional loneliness among caregivers. Discussion: Findings underscored the nuanced difference of social loneliness and emotional loneliness. Social policies that advance productive aging should recognize “unintended consequences” and aim to protect older adults from social and emotional loneliness. Counselling services and social support programs specifically for Japanese male caregivers are warranted.
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Fenton, Anny, Alexi A. Wright, Julia H. Rowland, Erin E. Kent, Kristin Litzelman, and Nancy Lynn Keating. "Comparing adult child and spousal caregiver burden and potential causes." Journal of Clinical Oncology 39, no. 15_suppl (May 20, 2021): 12127. http://dx.doi.org/10.1200/jco.2021.39.15_suppl.12127.
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12127 Background: Adult children caring for a parent with cancer comprise a significant segment of caregivers. Demographic trends indicate this caregiving population will grow as the baby boomer generation ages. Yet little is known about adult child caregivers’ needs and experiences and how they differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult children’s caregiver burden and its impact on patients. Methods: We analyzed adult child and spousal/partner caregivers’ surveys from the Cancer Care Outcomes Research and Surveillance consortium, a multi-regional population-based study of approximately 10,000 persons with newly diagnosed colorectal and lung cancer. We used t-tests and a series of multivariate regression models to assess whether adult child and spousal caregivers’ caregiving responsibilities, social/emotional burden, and financial burden (scaled 0-10) differed and examined patient and caregiver characteristics’ mediation of variation in burden. Results: Compared to spouses/partners (N=1029), adult children (N=230) completed similar levels of caregiving tasks but spent less time (14 vs. 24 hours/week; p<0.001). However, adult children experienced higher social/emotional burden (2.9 vs. 2.4; p<0.01). In baseline models controlling for patient clinical factors, caregiving characteristics, and caregiver demographics, adult children’s average social/emotional and financial burdens were statistically higher than spouses/partners. Additional adjustment for caregivers’ childcare responsibilities and employment eliminated social/emotional and financial burden disparities. Additional adjustment to the baseline model for caregiver-patient gender concordance eliminated the social/emotional burden gap. Communication quality was a large and statistically significant predictor of both burdens (p<0.001). Conclusions: Adult children spend less time caregiving than spouses/partners but experience higher caregiving burden. Adult children’s childcare and career responsibilities help explain this increased burden. Gender concordance between caregiver and patient may also contribute to social/emotional burden, adding important context to prior research indicating female caregivers experience the greatest burden. Interventions to improve communication between caregivers and patients have the potential to reduce both adult child and spouses/partners caregiver burden.[Table: see text]
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Gibson, Kirstian, Shelley Peacock, and Melanie Bayly. "Qualitative exploration of emotional and social changes from diagnosis to bereavement for spousal caregivers of persons with dementia." BMJ Open 9, no. 9 (September 2019): e031423. http://dx.doi.org/10.1136/bmjopen-2019-031423.
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ObjectivesTo understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse’s disease, from diagnosis into bereavement.DesignQualitative interview study with convenience sampling and thematic analysis approach.ParticipantsParticipants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.SettingData collected in a small Canadian prairie city between fall 2014 and winter 2015.FindingsTwo overarching themes were developed as important components of participants’ caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.ConclusionsThe findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
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Malhotra, Chetna, Rahul Malhotra, Truls Østbye, David Matchar, and Angelique Chan. "Depressive symptoms among informal caregivers of older adults: insights from the Singapore Survey on Informal Caregiving." International Psychogeriatrics 24, no. 8 (March 22, 2012): 1335–46. http://dx.doi.org/10.1017/s1041610212000324.
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ABSTRACTBackground: This paper determines care recipient and caregiver characteristics and caregiving dimensions – associated with depression among caregivers of older adults, using path analysis and assesses whether the identified path model differs between spousal and adult child caregivers.Methods: Data from 1,190 dyads comprising care recipients (community-dwelling adults aged ≥75 years with at least one activity of daily living (ADL) limitation) and caregivers (family member/friend most involved in providing care/ensuring provision of care to care recipient), who were interviewed through the Singapore Survey on Informal Caregiving (2010–2011), were used. Using path analysis, we assessed the direct and indirect associations between primary stressors (care recipient's ADL and instrumental ADL status, and memory and behavior problems), caregiver health status, receipt of assistance from a foreign domestic worker/maid, amount of caregiving, negative reaction to caregiving, caregiver's self-esteem, perceived emotional support, and caregiver depressive symptoms.Results: Our analysis showed that primary stressors, receipt of assistance from a foreign domestic worker/maid, perceived emotional support, and caregiver health status were directly or indirectly associated with caregiver depressive symptoms, and this association was mediated by negative reaction to caregiving. Caregiver self-esteem mediated the relationship between perceived emotional support and negative reaction to caregiving only among adult child caregivers.Conclusions: The results provide insights into factors associated with depressive symptoms among spousal and adult child caregivers, and help identify targeted interventions for improving caregiver mood.
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Longacre, Margaret L., Eric A. Ross, and Carolyn Y. Fang. "Caregiving Choice and Emotional Stress Among Cancer Caregivers." Western Journal of Nursing Research 36, no. 6 (November 11, 2013): 806–24. http://dx.doi.org/10.1177/0193945913510211.
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Vogus, Timothy J., Allison S. Gabriel, and Laura E. McClelland. "The Social Context of Caregiving Work in Health Care: Pushing Conceptual and Methodological Frontiers." Work and Occupations 47, no. 2 (March 9, 2020): 123–43. http://dx.doi.org/10.1177/0730888420909495.
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As the demands and nature of caregiving work in the health-care sector become more varied and challenging, our research and theories need to match this evolving reality. This editorial introduces theories of caregiving work and then uses each of the four papers featured in the special issue to advance a more nuanced and social approach to theorizing and studying the emotional experience of caregiving work. The articles and editorial explore the implications of whole person organizational and social supports, (un)shared social location between caregivers and patients, the complexity and consequences of emotional experience, and novel measurement and analytic tools to study them.
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SCHOFIELD, H. L., B. MURPHY, H. E. HERRMAN, S. BLOCH, and B. SINGH. "Family caregiving: measurement of emotional well-being and various aspects of the caregiving role." Psychological Medicine 27, no. 3 (May 1997): 647–57. http://dx.doi.org/10.1017/s0033291797004820.
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McDonnell, Cadhla, Nancy Luke, and Susan E. Short. "Happy Moms, Happier Dads: Gendered Caregiving and Parents’ Affect." Journal of Family Issues 40, no. 17 (July 5, 2019): 2553–81. http://dx.doi.org/10.1177/0192513x19860179.
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Parenting is emotionally demanding and highly gendered. We use data from the American Time Use Survey to examine mothers’ and fathers’ momentary affect during childcare activities. We observe a gender imbalance in the emotional rewards of childcare: Fathers report more happiness, less stress, and less tiredness than mothers. We introduce the “care context”—defined as the type of childcare activity, when and where it takes place, who is present, and how much care is involved—as an explanation for these gender differences in parents’ affect. The analysis reveals that most dimensions of the care context vary between mothers and fathers. We also find that the care context fully accounts for differences in mothers’ and fathers’ happiness, partially explains differences in stress, and does little to explain differences in tiredness. Thus, the gender imbalance in the emotional rewards of childcare is partially due to parents’ highly gendered engagement with their children.
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Monnot, Marilee, Robert Foley, and Elliott Ross. "Affective prosody: Whence motherese." Behavioral and Brain Sciences 27, no. 4 (August 2004): 518–19. http://dx.doi.org/10.1017/s0140525x04390114.
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Motherese is a form of affective prosody injected automatically into speech during caregiving solicitude. Affective prosody is the aspect of language that conveys emotion by changes in tone, rhythm, and emphasis during speech. It is a neocortical function that allows graded, highly varied vocal emotional expression. Other mammals have only rigid, species-specific, limbic vocalizations. Thus, encephalization with corticalization is necessary for the evolution of progressively complex vocal emotional displays.
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Tarter, Robin, Dena Hassouneh, Allison Lindauer, and Nathan Dieckmann. "CHOICE MODERATES RELATIONSHIPS BETWEEN LEVEL AND DURATION OF CARE AND THE HEALTH IMPACT OF CARING FOR AN OLDER PARENT." Innovation in Aging 3, Supplement_1 (November 2019): S109. http://dx.doi.org/10.1093/geroni/igz038.405.
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Abstract The perception of choice in the caregiving role has emerged as a key theme in qualitative gerontological caregiving research but few studies have examined choice quantitatively. The aim of our study was to test whether perceived choice moderated the relation between level and duration of care and the health impact of caring for a parent over the age of 65. We tested these questions in a series of structural equation models using existing data from the National Alliance for Caregiving, Caregiving in the U.S. 2015 Survey. We found that for adult-child caregivers of parents who reported a lack of choice in taking on the caregiving role, greater responsibilities for assistance with activities of daily living (ADLs) (p<0.01) and instrumental ADLS (p<0.01), and greater time providing care (p<0.05) predicted the negative impact of caregiving on caregiver health. The number of ADLs performed also predicted the emotional stress of caregiving for parents (p<0.01). Conversely, for caregivers who reported that they did have a choice in taking on the caregiving role, level and duration of care were not significantly related to the impact of caregiving on caregiver health, or the emotional stress of caregiving. Women were significantly more likely to report a lack of choice than men (p<0.05). Additional research is needed to explore the meaning of choice, and the ways in which choice may be especially constrained for daughters who care for older adults, in order to develop interventions to ameliorate the potentially deleterious health effects of caregiving on adult-children.
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Yap, LKP, CCD Seow, LM Henderson, and YNJ Goh. "Family caregivers and caregiving in dementia." Reviews in Clinical Gerontology 15, no. 3-4 (August 2005): 263–71. http://dx.doi.org/10.1017/s0959259806001900.
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The alarming statistics of dementia are now widely acknowledged. The most recent estimates indicate 24.3 million suffer from this condition worldwide, with a new case being diagnosed every seven seconds. For the person afflicted, it robs him of his identity and, in the opinion of many, even his personhood. For family members, bereavement can begin from the early stages of the disease where a once-treasured relationship is gradually eroded. Family carers remain the main persons providing care, having to face much emotional, practical and economic strain in the process. Although there is no standard definition of family caregiving, it is understood to involve providing extraordinary care, often outside the bounds of what is usual in family relationships. Caregiving typically stretches over a prolonged period and entails significant expenditure of time, energy, finances, and tasks that may be unpleasant, emotionally stressful and physically exhausting.
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Patterson, Sarah E., and Rachel Margolis. "The Demography of Multigenerational Caregiving: A Critical Aspect of the Gendered Life Course." Socius: Sociological Research for a Dynamic World 5 (January 2019): 237802311986273. http://dx.doi.org/10.1177/2378023119862737.
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Multigenerational caregiving is important because it affects social and economic outcomes. Existing studies usually exclude theoretically and empirically important aspects—emotional care and horizontal care—that may systematically underestimate gender differences. In this study, we comprehensively describe caregiving by gender and age and examine how sensitive estimates are to the inclusion of directions and types of care. Using the Generations and Gender Survey (GGS) in Europe (N = 114,147), we find that women are more likely to provide care than men across the life course, and gender gaps are largest during critical periods for human capital accumulation. Significant gender gaps in favor of more women providing care are found in most countries, especially when emotional caregiving is included, but in some countries, more men provide care at the oldest ages. These findings highlight how measuring caregiving well is critical to understanding the gendered life course.
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Hu, Mengyao, and Sarah Patterson. "LATE-LIFE CARE FOR OLDER ADULTS: FINDINGS FROM NHATS AND NSOC." Innovation in Aging 6, Supplement_1 (November 1, 2022): 418. http://dx.doi.org/10.1093/geroni/igac059.1640.
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Abstract With the aging of the U.S. population, caregiving has become an emerging public health issue that affects the health and quality of life for millions of care recipients and their caregivers. An increasing number of older adults rely on their family caregiver networks and home-based clinical services for physical, social and emotional support. Caregiving plays an important role in health and wellbeing of older adults both in daily life and in the context of health care, e.g., in post-acute caregiving after hospital discharge. There is a growing interest in identifying caregivers in greatest need of support and developing programs and interventions to help these caregivers. This symposium describes caregiver network and examines the roles of the caregiver network and family caregiving support on care recipients’ and caregivers’ quality-of-life outcomes using the National Health and Aging Trends Study (NHATS) and linked National Study on Caregiving (NSOC). This symposium will 1) evaluate typologies of the structures and compositions of caregiver network and examine their effects on care recipients’ well-being; 2) describe findings on associations between caregiving network and caregiver supports with unmet needs among older adults; 3) describe the role of unpaid caregivers after hospital discharge; 4) evaluate effects of family caregiving support in facilitating the use of home-based clinical services by older adults; 5) examine the effects of family disagreement on caregivers’ emotional difficulty and overload in dementia caregiving. Together, these presentations suggest important public health implications for research, policy and practice for improving late-life caregiving.
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Fairchild, Kaci, Shirit Kamil-Rosenberg, Heather Taylor, Peter Louras, Blake Scanlon, Jonathon Myers, and Jerome Yesavage. "TECHNOLOGY-BASED INTERVENTIONS TO IMPROVE CAREGIVER WELL-BEING." Innovation in Aging 3, Supplement_1 (November 2019): S561. http://dx.doi.org/10.1093/geroni/igz038.2073.
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Abstract Informal or unpaid care is the most common form of long-term care. Despite clear benefits for the care recipient, caregiving can have unintended physical and emotional consequences for caregivers. Traditional caregiver interventions are limited in scope, as they often focus on the emotional consequences of caregiving; however, the physiological effects of caregiving are equally deleterious to caregiver health. Exercise improves physical health, yet the demands of caregiving can limit participation in physical activity. Traditional gym-based interventions may not be feasible for many caregivers. Advances in technology present an opportunity to address these limitations, specifically in the areas of accessibility and acceptability. The Combined Online Assistance for Caregiver Health (COACH) program combines evidence-based skills training with physical exercise in a tablet-based intervention. Preliminary evidence for the physical and psychological benefits are promising; however, differential attrition rates are informative as to the acceptability of technology-based interventions among some caregivers.
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Masterson, Melissa P., Karen E. Hurley, Talia Zaider, and David W. Kissane. "Toward a model of continuous care: A necessity for caregiving partners." Palliative and Supportive Care 13, no. 5 (February 11, 2015): 1459–67. http://dx.doi.org/10.1017/s1478951515000231.
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AbstractObjective:Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum.Method:In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement.Results:Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course.Significance:of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient's death.
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Irani, Elliane, Atsadaporn Niyomyart, and Ronald L. Hickman. "Family Caregivers’ Experiences and Changes in Caregiving Tasks During the COVID-19 Pandemic." Clinical Nursing Research 30, no. 7 (May 17, 2021): 1088–97. http://dx.doi.org/10.1177/10547738211014211.
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The purpose of this descriptive study was to describe family caregivers’ experiences and changes in caregiving tasks and approaches during the COVID-19 pandemic. Using web-based strategies, 69 family caregivers of adults with chronic or disabling conditions were recruited and completed an online survey about positive and negative caregiving experiences, and ways in which caregiving has changed. Data were analyzed using descriptive statistics (structured questions) and conventional content analysis (open-ended responses). Participants reported concerns about their loved one’s physical and mental health, the limited access to other caregiving sources, and the limited opportunities to maintain personal well-being. Caregiving tasks completed more than usual included providing emotional support, shopping for groceries and essentials, and contacting healthcare providers. Participants modified their caregiving approach by assuming added responsibilities, leveraging technology, and managing a new caregiving routine. Findings indicate that family caregivers experienced additional caregiving challenges and changed caregiving tasks considering the limited resources available.
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Beijers, Roseriet, Marta Miragall, Yvonne van den Berg, Hanna Konttinen, and Tatjana van Strien. "Parent–Infant Attachment Insecurity and Emotional Eating in Adolescence: Mediation through Emotion Suppression and Alexithymia." Nutrients 13, no. 5 (May 14, 2021): 1662. http://dx.doi.org/10.3390/nu13051662.
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Emotional eating (EE), the propensity to eat in response to emotions, is thought to have its origins in the early parent–infant relationship. This study tested the hypothesis that infant attachment insecurity results in EE in adolescence through the increased use of the emotion regulation strategy suppression of emotions and subsequent alexithymia. At the age of 15 months, parent–infant attachment security (n = 129) was observed with two abbreviated attachment measures: the shortened strange situation procedure (SSSP), and the shortened attachment Q-set (S-AQS). At the age of 12 years, children completed self-report questionnaires to assess the suppression of emotions, alexithymia, and EE. At the age of 16 years, EE was measured again. The mediation models indicated that lower parent–infant attachment security predicted increased use of suppression of emotions, which was related to increased alexithymia, and in turn more EE at the age of 12 years. These results were similar and significant for both attachment measures, and also (marginal) significant with EE at the age of 16 years as an outcome. Lastly, when parental caregiving quality was included, the models with the SSSP as predictor remained significant, but the models with the S-AQS became insignificant. These results indicated that to a certain extent, infant attachment security could predict adolescent EE above and beyond parental caregiving quality.
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Polenick, Courtney A., and Nicole DePasquale. "Predictors of Secondary Role Strains Among Spousal Caregivers of Older Adults With Functional Disability." Gerontologist 59, no. 3 (January 8, 2018): 486–98. http://dx.doi.org/10.1093/geront/gnx204.
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Abstract Background and Objectives Aging spouses commonly care for a partner with functional disability, but little is known about how spousal caregiving may impact different life domains. This study evaluated how caregiving characteristics are associated with secondary role strains among spousal caregivers. Research Design and Methods This cross-sectional study examined 367 spousal caregivers and their partners from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Hierarchical regressions were estimated to determine how caregiver background factors (sociodemographics, health conditions) along with primary objective (care activities, care recipient health conditions, and dementia status) and subjective (emotional caregiving difficulties, role overload) stressors are linked to care-related valued activity restriction, negative caregiving relationship quality, and care-related family disagreements. Gender differences were considered. Results After accounting for all predictors, older caregivers and caregivers providing more help with activities of daily living and health system interactions (e.g., scheduling appointments) were more likely to report activity restriction, whereas caregivers with more emotional difficulties reported higher negative caregiving relationship quality. Role overload was positively associated with all three secondary strains. For husbands only, caring for a partner with more chronic conditions was linked to higher negative caregiving relationship quality and caring for a partner with dementia was associated with a greater likelihood of family disagreements. Discussion and Implications Secondary role strains may develop through similar and unique pathways for caregiving wives and husbands. Further research is needed to identify those who could benefit from support in managing their care responsibilities alongside other life areas.
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Krippl, Martin, Stephanie Ast-Scheitenberger, Ina Bovenschen, and Gottfried Spangler. "Maternal Perception of Infants’ Expressions of Emotion." Journal of Psychophysiology 24, no. 3 (January 2010): 173–85. http://dx.doi.org/10.1027/0269-8803/a000008.
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In light of Lang’s differentiation of the aversive and the approach system – and assumptions stemming from attachment theory – this study investigates the role of the approach or caregiving system for processing infant emotional stimuli by comparing IAPS pictures, infant pictures, and videos. IAPS pictures, infant pictures, and infant videos of positive, neutral, or negative content were presented to 69 mothers, accompanied by randomized startle probes. The assessment of emotional responses included subjective ratings of valence and arousal, corrugator activity, the startle amplitude, and electrodermal activity. In line with Lang’s original conception, the typical startle response pattern was found for IAPS pictures, whereas no startle modulation was observed for infant pictures. Moreover, the startle amplitudes during negative video scenes depicting crying infants were reduced. The results are discussed with respect to several theoretical and methodological considerations, including Lang’s theory, emotion regulation, opponent process theory, and the parental caregiving system.
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Tolea, Magdalena, Iris Cohen, Simone Camacho, and James Galvin. "MINDFULNESS AND CAREGIVING EXPERIENCE IN ADRD CAREGIVERS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 454–55. http://dx.doi.org/10.1093/geroni/igac059.1772.
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Abstract Mindfulness (being present in the moment without judgement) has been linked to greater caregiver emotional health. Recent mindfulness-based interventions report improved coping skills, mood, and reduced stress in dementia caregivers. In this cross-sectional study of 141 ADRD caregivers, we assessed whether the relationship between caregiver mindfulness and caregiver experience varies by caregiver gender, relationship to patient (spouse-vs-child), etiology (AD-vs-LBD), or stage (MCI-vs-dementia). A stratified univariate analytic approach was used. Four mindfulness parameters (AMPS scale) were used: global score (GS), decentering (F1), positive (F2), and negative emotional regulation (F3). Outcomes included positive and negative appraisals of caregiving (PANAC), preparedness, care confidence, and depression. GS was linked to positive outcomes in male (rPANAC+=0.32/p=0.005), spouse caregivers (rPANAC+)=0.32/p=0.006 ) of ADRD patients regardless of etiology (rPANAC+=0.31/p=0.013 for AD; rconfidence=0.31/p=0.036 for LBD) and stage (rPANAC+=0.33/p=0.010 and rpreparedness=0.38,/p=0.008 for MCI; rPANAC+=0.29/p=0.011 and rconfidence=0.31/p=0.007 for dementia). Inverse relationships were observed with negative outcomes in male (rPANAC-=-0.46/p=0.002 and rdepression=-0.41/p=0.005), spouse caregivers (rPANAC-=-0.25/p=0.035 and rdepression=-0.30/p=0.009) of AD patients (rPANAC-=-0.25/p=0.043 and rdepression=-0.33/p=0.009) in early stages (rdepression=-0.41/p=0.001). F2 contributed to most relationships, with F3 and F1 significant in some but not all caregiver groups. Specifically, male spouse caregivers of AD patients regardless of stage may benefit from full-scope (F1-F3) programs while those of LBD patients from programs focused on improving emotional regulation (F2-F3). Wives of AD and LBD patients may in turn benefit from programs to improve positive emotional regulation (F2). Findings suggest that tailoring mindfulness-based interventions to specific caregiver groups may be effective in improving caregiver experience and mood.
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Ramasamy, Thendral, Surendran Veeraiah, and Kalpana Balakrishnan. "Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer - A Mixed-method Study." Indian Journal of Palliative Care 27 (November 25, 2021): 503–12. http://dx.doi.org/10.25259/ijpc_76_21.
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Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver’s appraisal of caregiving and (4) caregiver’s perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver’s life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.
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Whittick, Janice E. "Dementia and mental handicap: Attitudes, emotional distress and caregiving." British Journal of Medical Psychology 62, no. 2 (June 1989): 181–89. http://dx.doi.org/10.1111/j.2044-8341.1989.tb02825.x.
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Gaugler, Joseph E., Keith A. Anderson, Corinne R. Leach, Charles D. Smith, Frederick A. Schmitt, and Marta Mendiondo. "The emotional ramifications of unmet need in dementia caregiving." American Journal of Alzheimer's Disease & Other Dementiasr 19, no. 6 (November 2004): 369–80. http://dx.doi.org/10.1177/153331750401900605.
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Burnley, Cynthia S. "Caregiving: The impact on emotional support for single women." Journal of Aging Studies 1, no. 3 (September 1987): 253–64. http://dx.doi.org/10.1016/0890-4065(87)90017-x.
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Groh, Ashley M., Glenn I. Roisman, Katherine C. Haydon, Kelly Bost, Nancy McElwain, Leanna Garcia, and Colleen Hester. "Mothers’ electrophysiological, subjective, and observed emotional responding to infant crying: The role of secure base script knowledge." Development and Psychopathology 27, no. 4pt1 (September 8, 2014): 1237–50. http://dx.doi.org/10.1017/s0954579414000881.
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AbstractThis study examined the extent to which secure base script knowledge—reflected in the ability to generate narratives in which attachment-relevant events are encountered, a clear need for assistance is communicated, competent help is provided and accepted, and the problem is resolved—is associated with mothers’ electrophysiological, subjective, and observed emotional responses to an infant distress vocalization. While listening to an infant crying, mothers (N= 108,Mage = 34 years) lower on secure base script knowledge exhibited smaller shifts in relative left (vs. right) frontal EEG activation from rest, reported smaller reductions in feelings of positive emotion from rest, and expressed greater levels of tension. Findings indicate that lower levels of secure base script knowledge are associated with an organization of emotional responding indicative of a less flexible and more emotionally restricted response to infant distress. Discussion focuses on the contribution of mothers’ attachment representations to their ability to effectively manage emotional responding to infant distress in a manner expected to support sensitive caregiving.
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Zheng, Robert Z., Candice M. Daniel, Robert D. Hill, Marilyn Luptak, Bret L. Hicken, Marren Grant, and Randall Rupper. "The Effects of High and Low Technologies on Emotional Support for Caregivers." International Journal of Cyber Behavior, Psychology and Learning 3, no. 3 (July 2013): 34–45. http://dx.doi.org/10.4018/ijcbpl.2013070103.
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Understanding the role of modern technology in providing adjunctive emotional support to caregivers has been a focus in contemporary caregiving research. However, it remains largely unknown (1) whether there are differences regarding the technologies used in caregiving support to achieve this objective and (2) which factors influence the outcome of emotional support. The current research describes a framework to address this issue and examines the role of different technologies in supporting caregiver emotional needs. Sixty older caregivers were recruited in the current study and randomly assigned to high and low technology guided caregiver support conditions. The findings revealed a significant impact in the high technology guided intervention for emotional support as measured by burden reduction. The discussion on the use of high technology guided support strategies for older caregiver training is offered with implications for future research and practice.
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Johansson, Marcus F., Kevin J. McKee, Lena Dahlberg, Martina Summer Meranius, Christine L. Williams, and Lena Marmstål Hammar. "Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden." International Journal of Environmental Research and Public Health 19, no. 3 (February 4, 2022): 1788. http://dx.doi.org/10.3390/ijerph19031788.
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(1) Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2) Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4) Conclusions: Support to spouse carers of PwD should address the carer–care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.
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Tong, Huijuan, Feng Qiu, and Ling Fan. "Characterising common challenges faced by parental caregivers of children with type 1 diabetes mellitus in mainland China: a qualitative study." BMJ Open 12, no. 1 (January 2022): e048763. http://dx.doi.org/10.1136/bmjopen-2021-048763.
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ObjectivesThe mental state of parental caregivers affects outcomes in children with type 1 diabetes mellitus (T1DM). This study aimed to qualitatively examine perception of common challenges among parental caregivers of children with T1DM.SettingSemistructured interviews 45–60 min long were conducted with parental caregivers of children with T1DM. Interview recordings were transcribed and coded in NVivo V.11.0 to observe emergent themes.ParticipantsEligible T1DM caregiving parents (parent(s) and/or legal guardian(s)) were identified from caregivers attending visits with children hospitalised or assessed in the Pediatric Neuroendocrinology Department of Shengjing Hospital, China Medical University in Shenyang from January 2018 to June 2019.Primary and secondary outcome measuresNot applicable.ResultsA total of 20 T1DM caregiving parents were interviewed, aged 30–53 years, including 7 fathers and 13 mothers, with their children whose mean age was 10.6±2.45 years. Content analysis revealed 5 major themes with 13 subthemes, including persistent psychological stress (catastrophic emotions, emotional distress and altered self-efficacy), family function change (altered family life patterns and changes in parental role/function), challenges in daily management (technical challenges, emotional regulation, parent–child conflict and transition of care autonomy from parent to child), financial burden (cost burden of treatment and altered family economics), and lack of social support (social activity limitations and insufficient support system).ConclusionsThe period of emotional disturbance during initial diagnosis, psychological stresses of long-term caregiving, and conflict emerging from transition from parental to child responsibility all can cause psychological response detrimental to parental caregivers and children with T1DM. This work provides compelling evidence for the role of assessment and intervention in parental caregivers’ psychological and emotional well-being in diabetes care, as well as for the necessity of improved social and school support for children with T1DM in China.
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JO, SUSAN, KEVIN BRAZIL, LYNNE LOHFELD, and KATHLEEN WILLISON. "Caregiving at the end of life: Perspectives from spousal caregivers and care recipients." Palliative and Supportive Care 5, no. 1 (February 27, 2007): 11–17. http://dx.doi.org/10.1017/s1478951507070034.
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Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.
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Sherman. "A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients." Healthcare 7, no. 2 (April 24, 2019): 63. http://dx.doi.org/10.3390/healthcare7020063.
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In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver’s opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers’ health and well-being.
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Ketlogetswe, Tinalipi S., Jacoba J. Jansen Van Rensburg, and Johanna Elizabeth Maree. "The experiences of caregivers of patients living with cancer admitted to a hospice in South Africa." International Journal of Palliative Nursing 28, no. 4 (April 2, 2022): 164–71. http://dx.doi.org/10.12968/ijpn.2022.28.4.164.
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Background: Caregivers share cancer experiences with patients, but little is known about their own experiences in the end-of-life phase, the most difficult phase in the caregiving journey. Aims: To describe the experiences of caregivers of cancer patients admitted to a hospice in South Africa. Methods: A qualitative design was used; 22 (n=22) participants were purposively selected and in-depth interviews were conducted. Analysis of the data was by qualitative content analysis. Findings: A total of three themes arose from the data: emotional responses towards the caregiver role, personal cost of caregiving and spiritual issues relating to caregiving. Conclusion: Caring for cancer patients during the last phase of life was not easy. Responsibilities overwhelmed the participants and they were emotionally exhausted. They lacked knowledge of how to care and experienced a heavy financial burden. Despite the challenges that they faced, faith and religious practices served as a coping mechanism and kept some going.