Full Text Available ... the many challenges of caregiving. Read stories Caregiver e-newsletter This free, electronic newsletter offers Medicare updates ... other resources for caregivers. Sign up for our e-newsletter Caregiver resources Get targeted information and tools ...
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... current/fahc.html/ Search Share Embed Caregiver stress Caregivers care for someone with an illness, injury, ... be rewarding, but it can also be challenging. Stress from caregiving is common. Women especially are at ...
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Burton, Lynda C.; Zdaniuk, Bozena; Schulz, Richard; Jackson, Sharon; Hirsch, Calvin
Describes transitions over 5 years among community-dwelling elderly spouses into and within caregiving roles and associated health outcomes. The trajectory of health outcomes associated with caregiving was generally downward. Those who transitioned to heavy caregiving had more symptoms of depression, and poorer self-reported health and health…
Caring for the Caregiver is information for persons helping to care for people with cancer. The emphasis is on what caregivers can do to help themselves at this stressful time. Topics included are: Who Is a Caregiver, Your Feelings, Asking For Help, Caring for Yourself, Going With Your Loved One to Medical Visits, Talking With Others, Remember, Other Resources for Caregivers. The information is written on a basic level and it is very suitable for health professionals to share with persons helping to care for family members or friends who have cancer. The National Cancer Institute posted this information on its website last June 29. PMID:19062356
... Month Friend: Living Independently Group Improving Doctor/ Caregiver Communications Helpful Ideas for Family Caregivers From NFCA There is much to be gained by improving communications between family caregivers and health care professionals, especially ...
... leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ...
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... FCA - A A + A You are here Home Depression and Caregiving Order this publication Printer-friendly version ... a more serious depression over time. Symptoms of Depression People experience depression in different ways. Some may ...
... feel angry because their lives have been turned upside down by taking on caregiving responsibilities. These feelings ... person you are caring for, are also under stress. People react in different ways to stressful events ...
Cohen, Steven A.; Cook, Sarah; Kelley, Lauren; Sando, Trisha; Bell, Allison E.
Background Over 50 million informal caregivers in the United States provide care to an aging adult, saving the economy hundreds of billions of dollars annually from costly hospitalization or institutionalization. Despite the benefits associated with caregiving, caregiver stress can lead to negative physical and mental health consequences, or “caregiver burden”. Given these potential negative consequences of caregiver burden, it is important not only to understand the multidimensional componen...
Daniela de Araújo Lamino
Full Text Available Cross-sectional study, carried out at the outpatient clinic of an oncology hospital. Data were collected from 88 caregivers of cancer patients using the Caregiver General Comfort Questionnaire (GCQ to assess the caregivers’ comfort. The caregivers’ GCQ score mean was 203.9; better comfort scores was associated with age, care time and current occupation; positive aspects of comfort were related to the fact that caregivers felt loved, to patients’ physical and environmental comfort and to caregivers’ spirituality. 203.9; better comfort scores were associated with age of the caregiver and current occupation; positive aspects of comfort were related to the fact that caregivers felt loved, to patients’ physical and environmental comfort and to caregivers’ spirituality. Caregivers, who didn’t have a paid job or leisure’s activities showed a worse GCQ. The GCQ scale can help to identify factors that interfere in caregivers’ comfort, as well as needs that can be modified through health professionals’ interventions.
Boerner, Kathrin; Schulz, Richard
Most deaths are preceded by chronic illness and disability and the provision of support by family caregivers. The purpose of this article is to describe how the caregiving experience affects bereavement, with an emphasis on the relationship between challenging caregiving situations and difficult grieving processes – often referred to as `complicated grief'. The article starts with a brief summary of the general literature on caregiving and bereavement. It then defines complicated grief and discusses why some caregivers may struggle with the death of their loved one. Finally, it offers practical suggestions for what professionals can do to help caregivers both before and after the death has occurred. PMID:20463850
... calling a friend, praying, meditating, singing, listening to music or taking a bath. Try experimenting with different ... Center on Caregiving, FCA offers information on current social, public policy ... in the development of public and private programs for caregivers. For ...
... the End of Life Caregivers need help and emotional support. A caregiver responds in his or her ... summaries on Fatigue and Sleep Disorders . Nausea , vomiting , anorexia , and cachexia —See the PDQ summaries on Nausea ...
Boerner, Kathrin; Schulz, Richard
Most deaths are preceded by chronic illness and disability and the provision of support by family caregivers. The purpose of this article is to describe how the caregiving experience affects bereavement, with an emphasis on the relationship between challenging caregiving situations and difficult grieving processes – often referred to as `complicated grief'. The article starts with a brief summary of the general literature on caregiving and bereavement. It then defines complicated grief and di...
Sloman, Kimberly N; Vollmer, Timothy R; Cotnoir, Nicole M; Borrero, Carrie S.W; Borrero, John C; Samaha, Andrew L; St. Peter, Claire C
We conducted descriptive observations of 5 individuals with developmental disabilities and severe problem behavior while they interacted with their caregivers in either simulated environments (an inpatient hospital facility) or in their homes. The focus of the study was on caregiver reprimands and child problem behavior. Thus, we compared the frequency of problem behavior that immediately preceded a caregiver reprimand to that immediately following a caregiver reprimand, and the results showe...
Hermanns, Melinda; Mastel-Smith, Beth
A common definition of caregiving does not exist. In an attempt to define the concept of caregiving, the authors used a hybrid qualitative model of concept development to analyze caregiving. The model consists of three phases: (a) theoretical, (b) fieldwork, and (c) analytical. The theoretical phase involves conducting an interdisciplinary…
This podcast discusses the role of caregivers in Indian County and the importance of protecting their health. It is primarily targeted to public health and aging services professionals. Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 12/23/2009.
Schulz, Richard; Hebert, Randy; Boerner, Kathrin
Approximately 20% of bereaved caregivers will experience a variety of psychiatric symptoms including depression and/or complicated grief, a disorder characterized by persistently high levels of distress that impair functioning in important life domains. We identify prebereavement risk factors for poor adjustment after the death of a loved one along with preventive strategies that can be implemented prior to death as well as diagnostic procedures and therapeutic strategies that can be used to ...
Describes the role caregivers play in helping young children dealing with obesity. Examines: (1) causes of childhood obesity; (2) caregiver's position; (3) learning nutrition concepts; (4) preparing and serving healthy foods; (5) encouraging physical activity; (6) working with parents; and (7) assisting an obese child. (SD)
Chappell, Neena L.; Dujela, Carren
Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies…
MacNeil, Gordon; Kosberg, Jordan I.; Durkin, Daniel W.; Dooley, W. Keith; DeCoster, Jamie; Williamson, Gail M.
Purpose: Caregivers feeling stress and experiencing mental health problems can be at risk for engaging in abusive acts against elderly care recipients. Potentially harmful behavior (PHB) was used as a measure of caregivers' engagement in, or fear of engagement in, behavior that places dependent care recipients at risk of physical and/or…
This study aims to measure the causal effect of informal caregiving on the health and health care use of women who are caregivers, using instrumental variables. We use data from South Korea, where daughters and daughters-in-law are the prevalent source of caregivers for frail elderly parents and parents-in-law. A key insight of our instrumental variable approach is that having a parent-in-law with functional limitations increases the probability of providing informal care to that parent-in-la...
Minna Maria Pöysti
Full Text Available The proportion of male caregivers is rapidly increasing. However, there are few large scale studies exploring gender differences in the burden or coping with caregiving. We investigated this among caregivers of patients with dementia. The study cohort consisted of 335 dyads of wife-husband couples from two studies including dementia patients and their spousal caregivers. Baseline mini-mental state examination (MMSE, clinical dementia rating scale (CDR, neuropsychiatric inventory (NPI, cornell depression scale and charlson comorbidity index (CCI were used to describe patients with dementia, Zarit burden scale and geriatric depression scale were used to measure experienced burden and depression of caregivers. Mean age of caregivers was 78 years. There were no differences in depression, satisfaction with life, or loneliness according to caregivers' gender. Male caregivers had more comorbidities than females (CCI 1.9 versus 1.1, P<0.001, and the wives of male caregivers had a more severe stage of dementia than husbands of female caregivers (CDR, P=0.048; MMSE14.0 versus 17.7, P<0.001. However, the mean Zarit burden scale was significantly lower among male than female caregivers (31.5 versus 37.5; P<0.001. Lower education of male caregivers tended to be associated with less experienced burden. In conclusion, male caregivers of dementia experienced lower burden than female caregivers despite care recipients' more severe disease.
Andruccioli, Jessica; Russo, Maria Maffia; Bruschi, Angela; Pedrabissi, Luigi; Sarti, Donatella; Monterubbianesi, Maria Cristina; Rossi, Sabina; Rocconi, Sabina; Raffaeli, William
In this study, we investigated caregiver's death representation in hospice. The results presented here are a further analysis of the data collected in our previous study, concerning the evaluation of the caregiver in hospice. The data analysis of 24 caregivers of patients hospitalized in Rimini Hospice (Italy) underlined that caregivers avoiding death representation of the patient admitted to hospice had fewer protective factors (52.3%) and more risk factors (47.7%) than caregivers nonavoiding (66.5% and 33.5%, respectively). Caregivers avoiding death representation, moreover, experienced a greater distress (58%) than those nonavoiding (42%). PMID:22241459
Gupta, Shaloo; Isherwood, Gina; Jones, Kevin; Van Impe, Kristel
Background Research indicates schizophrenia is a cause of burden for patients and caregivers. This study examined health-related quality of life (HRQoL) and comorbidities experienced by informal schizophrenia caregivers compared with non-caregivers and caregivers of adults with other conditions (e.g., Alzheimer’s disease, cancer, and stroke). Methods Data were obtained from the 5EU (France, Germany, Italy, Spain, UK) National Health and Wellness Survey, an online questionnaire that is represe...
Talkington-Boyer, Shannon; Snyder, Douglas K.
Examined impact of caregiving among 110 caregivers to aging family member with Alzheimer's disease. Family caregivers' appraisals along dimensions of subjective burden, negative impact, caregiving satisfaction, and caregiver mastery were correlated with extent of memory and behavior problems of patient and caregivers' coping style, locus of…
Brank, Eve M; Wylie, Lindsey E
Informal older adult caregiving allows older adults to stay in their homes or live with loved ones, but decisions surrounding older adult care are fraught with complexities. Related research and case law suggest that an older adult's need for and refusal of help are important considerations; the current study is the first to examine these factors experimentally. Two samples (potential caregivers and care recipients) provided responses regarding anticipated emotions, caregiver abilities, and allocation of daily caregiving decision making based on a vignette portraying an older adult who had a high or low level of autonomy and who accepted or refused help. Study findings suggest differing views about caregiving; potential caregivers may not be as well prepared to take on caregiving as the potential care recipients anticipate and potential caregivers may allocate more decisional responsibility to older adults than the care recipients expect. Implications for older adult abuse are discussed. PMID:24652926
Valerie E. Boyer
Full Text Available A disconnect is present between philosophical desire to actively involve caregivers in early intervention (EI and implementation by EI providers. Preservice education may shape beliefs and build knowledge and skills supporting active participation of caregivers. Two graduate clinicians in speech-language pathology completed a practicum with a two-year-old child, Sam, and his family with half of the sessions including active participation by the caregivers. Analysis of progress notes, individual reflections, and interview transcript yielded clinicians reporting beliefs in collaboration with caregivers and building relationships with caregivers as key to involving caregivers. The clinicians demonstrated knowledge regarding intervention techniques with differences in progress notes based on the presence of the caregiver in sessions. This practicum opportunity promoted development of beliefs, knowledge, and skills about actively involving caregivers in early intervention.
... Supplements Videos & Tools You Are Here: Home → Multiple Languages → All Health Topics → Caregivers URL of this page: https://medlineplus.gov/languages/caregivers.html Other topics A-Z A B ...
Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.
Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…
Hüll, M; Wernher, I
Despite an increasing number of trials on the effects of psychosocial interventions in dementia, recommendations concerning these interventions are still based on limited evidence. The S3 dementia guidelines, initiated by the German associations of psychiatry and neurology (DGPPN and DGN), suggest the use of procedures including reality orientation, reminiscence, and cognitive stimulation at recommendation level C. Occupational therapy (including caregiver education), physical activation and music therapy are also suggested at recommendation level C. On a higher level of recommendation (level B), structured support of the caregiver is recommended. Based on the German healthcare system and depending on local structures, this may be offered at the medical office of a general practitioner, a specialist for neurology or psychiatry or at a memory clinic or an outpatient clinic. Furthermore, caregiver support is provided by local branches of the German Alzheimer Association. An increase in recent high level trials suggests an upcoming improvement of the evidence base for psychosocial interventions. PMID:20567961
... caregiver. Even from far away, there are different roles you can take on based on the needs of your family member. Who is a long-distance caregiver? Anyone, anywhere, can be a long-distance caregiver , no matter your gender, income, age, social status, or employment. If you ...
Szinovacz, Maximiliane E.; Davey, Adam
Purpose: Caregiving research has typically relied on cross-sectional data that focus on the primary caregiver. This approach neglects the dynamic and systemic character of caregiver networks. Our analyses addressed changes in adult child care networks over a 2-year period. Design and Methods: The study relied on pooled data from Waves 1 through 5…
Humble, Aine M.; Keefe, Janice M.; Auton, Greg M.
Using the concept of "retirement congruency" (RC), which takes into account greater variation in retirement decisions (low, moderate, or high RC) than a dichotomous conceptualization (forced versus chosen), multinomial logistic regression was conducted on a sample of caregivers from the 2002 Canadian General Social Survey who were retired from…
Tolkacheva, N.; Broese van Groenou, M. I.; Boer; Tilburg, van, P.J.A.
Previous research on the care-giver burden experienced by adult children has typically focused on the adult child and parent dyad. This study uses information on multiple informal care-givers and examines how characteristics of the informal care-giving network affect the adult child's care-giver burden. In 2007, 602 Dutch care-givers who were assisting their older parents reported on parental and personal characteristics, care activities, experienced burden and characteristics of other inform...
Buscemi, Valérie; Font Guiteras, Antoni; Viladrich, M. C.,
Objetive: Study the relationships between caregivers unmet needs and others caregiving outcomes in palliative care and cancer, which is a first and necessary step to offer adequate supporting intervention. Methods: 59 caregivers participated in a research that examined the caregiving outcomes using an Unmet Needs Questionnaire, the Hospital Anxiety and Depression Scale, and the Bakas Caregiving Outcomes Scale. Results and conclusions: Results showed a high average of unmet needs, especially e...
Murat Ilhan Atagun
Full Text Available Duration of human life has been substantially increased in the last fifty years. Survivals of diseases have been prolonged through the advances in medicine. Together with these gratifying consequences, there appeared novel difficulties to cope with. Furthermore developments including globalization, industrialization and transition from rural to urban life occurred during the last century; so family units became smaller and numbers of members on employment in family units increased. As a result numbers of family members to undertake the responsibility of care decreased. As a concept, caregiver burden expresses physical, psychosocial and financial reactions during the course of care providing. Distinct factors including structures of social, cultural and family units and health care systems may affect conditions of care. Caregiver’s age, gender, ethnicity, education, relationship with the patient, attitude towards providing care, financial situation, coping abilities, her own health, beliefs, social support and cultural pattern are the personal factors that are related to perception of caregiver burden. Burden of care giving is geared to differential aspects of care needs. For instance care needs of physically disabled and medical care requiring patients with spinal cord injuries may differ from care needs of chronic psychiatric disorders, demented patients in advanced age of their lives or cancer patients in terminal periods. Strain due to care giving may differ as a result of properties of care demands. It is aimed to review the burden of caregivers in different medical and psychiatric care requiring conditions and to introduce differential aspects of caregiver burden in these different conditions.
Pascual, Angel María; Santamaría, Juan Luis
This article provides a definition and description of grief, its characteristics, and the current explanatory models of this phenomenon (the stage model, task model, constructivist model and dual process model). The authors argue that a state of mourning in advance is produced in the process of dementia as a result of significant relational loss before death and describe the risk factors for complicated grief in caregivers: overload, lack of personal and material resources, delegation of care, and complex feelings such as guilt. The need for healthcare organizations to provide professional caregivers with the appropriate means to help with grief and to develop their own measures to prevent burnout is stressed. These measures could include protocols that provide bereavement intervention with the family, the primary caregiver, other patients and/or residents and the professional caregiving team. Finally, losses in persons with dementia must be taken into consideration, avoiding phenomena such as silencing and overprotection and encouraging acceptance and emotional support of their pain so that organic and emotional complications do not occur. PMID:19837483
...).'' Rather than establish a different program for travel benefits before and after training, we authorize beneficiary travel benefits (as implemented in 38 CFR part 70) in Sec. 71.25(d) to support the education and... beneficiary travel benefits to Family Caregivers but does not also require the equal application of...
Bruna Moretti Luchesi
Full Text Available Background The number of older caregivers is getting bigger and it is important to know if they experience depressive symptoms because there can be consequences for both caregiver and care recipient. Objective To analyze the recent publications related to the assessment of depressive symptoms in elderly caregivers. Methods Lilacs and PubMed databases were reviewed associating the descriptors “caregivers” AND “aged” AND “depression”. Inclusion criteria were texts including primary data in Portuguese, Spanish or English, published between 2009-2013, also data which evaluated elderly caregivers (≥ 60 and depression or depressive symptoms. There were found n = 1129 texts and after applying the inclusion criteria n = 17 were selected and analyzed. Results Geriatric Depressive Scale (-30 and -15 items and Center for Epidemiologic Studies Depression scale were the most used scales to evaluate depressive symptoms in older caregivers. Caregivers were in the most of the cases female and cared for a family member with dementia. The majority of the texts that compared older caregivers to older non-caregivers found that caregivers had more depressive symptoms. Discussion Early identification of depressive symptoms can help professionals to minimize damage in caregivers and in care recipient and to plan interventions focusing on improving quality of life of this specific caregiver group.
Moore, Helen; Gillespie, Alex
Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be. Caregivers understood the care-receivers' ratings but disagreed with them' Second, we report a qualitative analysis focussing on how caregivers felt themselves to be perceived by significant others. Caregivers felt that the care-receiver, family members, the general public, health services and even friends often have negative views of them. The 'caregiving bind' is proposed as a cause of caregivers' negative identity. It arises when caregivers try to protect the care-receiver's identity by concealing the extent of informal care provision, with the unintended consequence of undermining the prospects of the caregiver receiving positive social recognition for the challenging work of caregiving. The caregiving bind has implications for therapy and points to the potential of friends and health services to provide caregivers with positive social recognition. PMID:24996218
Martin, MY; Sanders, S.; Griffin, JM; Oster, RA; Ritchie, C; Phelan, SM; Atienza, AA; Kahn, K; van Ryn, M
BACKGROUND: As cancer care shifts from hospital to outpatient settings, the number of cancer caregivers continues to grow. However, little is known about the cancer caregiving experience. This gap in knowledge is especially evident for racially diverse caregivers. OBJECTIVE: This study, part of a multisite study of care recipients with either lung or colorectal cancer and their caregivers, examined the caregiving experiences of African American (AA) and white caregivers. METHODS: Caregivers w...
Kent, Erin E; Rowland, Julia H; Northouse, Laurel; Litzelman, Kristin; Chou, Wen-Ying Sylvia; Shelburne, Nonniekaye; Timura, Catherine; O'Mara, Ann; Huss, Karen
Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society. PMID:26991807
Sheehan, Nancy W.; Nuttall, Paul
Examined influence of interpersonal conflict, affection, and distress concerning dependency and caregiving satisfactions in predicting caregiver strain and negative emotion in 98 family caregivers. Found that interpersonal conflict between elderly carereceiver and caregiver predicted greatest amount of variance in both caregiver strain and…
Conclusions: Behavioral changes in patients (especially irritability and financial constraints had a significant independent impact on the burden experienced by primary caregivers of patients operated for intracranial tumors. Identifying and managing, these are essential for reducing caregiver burden.
Monin, Joan K.; Martire, Lynn M.; Schulz, Richard; Clark, Margaret S.
This study examined the association between care-recipients’ willingness to express emotions to spousal caregivers and caregiver’s well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients’ willingness to express happiness was associated with less insensitive caregiver responding, and willingness to express interpersonal emotions (e.g., compassion, guilt) was associated with less caregiving stress. There were also gender differences, such that caregiving wives, in particular, benefited from their husband’s willingness to express vulnerable (e.g., anxiety, sadness) and interpersonal emotions. PMID:19186921
MAYBERRY, LINDSAY S.; Heflinger, Craig Anne
Family caregivers’ conceptualizations of their child’s emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child’s EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child’s EBP: 12 caregivers viewed the EBP as caused by a disorder and described the ...
Makoae, Mokhantšo G.
The article describes the caregiving responsibility to provide food for chronically ill family members and the meanings attached to food and eating when ill created stress for family caregivers. The results come from a qualitative phenomenological study using in-depth interviews with 21 family caregivers of chronically ill HIV and AIDS patients in one district in Lesotho. Analysis of the interview data showed that the caregivers attached profound meanings to food and feeding care recipients. ...
Jennifer R. Pharr; Carolee Dodge Francis; Christine Terry; Clark, Michele C.
Ethnic minorities are expected to experience a greater demand for family caregiving than non-Latino Whites due to their projected population growth. Although the consensus of researchers on caregiving and culture finds that the caregiving experience differs significantly among cultural/ethnic groups, the question remains as to how cultural values and norms influence the caregiver experiences. We conducted an interpretative, phenomenological qualitative analysis of focus group transcripts from...
Monin, Joan K.; Martire, Lynn M.; Schulz, Richard; Clark, Margaret S.
This study examined the association between care-recipients’ willingness to express emotions to spousal caregivers and caregiver’s well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients’ willingness to express happiness was ass...
He, Daifeng; McHenry, Peter
Using the Survey of Income and Program Participation, we examine the impact of formal employment on informal caregiving. We instrument for individual work hours with state unemployment rates. We find that, among women of prime caregiving ages (40-64 years), working 10% more hours per week reduces the probability of providing informal care by about 2 percentage points. The effects are stronger for more time-intensive caregiving and if care recipients are household members. Our results imply that work-promoting policies have the unintended consequence of reducing informal caregiving in an aging society. Copyright © 2015 John Wiley & Sons, Ltd. PMID:26017375
Jang, Yuri; Clay, Olivio J.; Roth, David L.; Haley, William E.; Mittelman, Mary S.
Purpose: We examined the impact of caregiver neuroticism on longitudinal change in depression among spouse-caregivers of individuals with Alzheimer's disease receiving either enhanced psychosocial treatment or usual care. We were interested in whether high levels of caregiver neuroticism would lead to a diminished response to the enhanced…
Cantin, Gilles; Plante, Isabelle; Coutu, Sylvain; Brunson, Liesette
Despite the importance of establishing meaningful parent-caregiver relationships, little is known about these dyadic relationships among beginning caregivers, who often feel insufficiently prepared to build successful alliances with parents. The present study examined the congruence between parents' and beginning caregivers' perceptions of their…
Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.
Lund, Line; Ross, Lone; Petersen, Morten Aagaard; Grønvold, Mogens
caregiver's relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the 'Cancer Caregiving Tasks, Consequences and Needs...
Full Text Available Aim. Caregiver burden (CB in epilepsy constitutes an understudied area. Here we attempt to identify the magnitude of this burden, the factors associated with it, and its impact to caregiver quality of life (QOL. Methods. 48 persons with epilepsy (PWE underwent video-EEG monitoring and their caregivers completed questionnaires providing demographic, disease-related, psychiatric, cognitive, sleep, QOL, and burden information. Results. On regression analysis, higher number of antiepileptic drugs, poorer patient neuropsychological performance, lower patient QOL score, and lower caregiver education level were associated with higher CB. Time allocated to patient care approximated but did not attain statistical significance. A moderate inverse correlation between CB and caregiver QOL physical component summary score and a stronger inverse correlation between CB and caregiver QOL mental component summary score were seen. Conclusion. In a selected cohort of PWE undergoing video-EEG monitoring, we identified modest degree of CB, comparable to that reported in the literature for other chronic neurological conditions. It is associated with specific patient and caregiver characteristics and has a negative effect on caregiver QOL.
Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo
Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. PMID:26527229
Zarit, Steven; Femia, Elia
Gerontologic research in the past 40 years has shown that caring for an older, disabled person affects the health and well-being of the caregiver. This important contribution led to a wide range of programs and services designed to buffer caregivers from the effects of stressors. Many of these programs have been quite innovative. Although…
Samson, Zoe Blake; Parker, Monica; Dye, Clinton; Hepburn, Kenneth
Dementia family caregivers display significant rates of psychological and physical symptoms. African Americans (AAs) are disproportionately affected by dementia. African American caregivers display unique patterns of symptomology and responses to interventions designed to promote caregiver well-being. This study analyzed qualitative focus group data from 32 AA caregivers to explore how issues of race and culture may be incorporated into a culturally sensitive intervention for AA dementia family caregivers. Caregivers were asked scripted questions about their caregiving experiences and to suggest alterations to an existing psychoeducation program. Analysis revealed 4 key themes: the tradition of family care, caregiving and caregiving issues, culturally appropriate care, and navigating without a map. Suggestions for an educational program included a focus on developing caregiver skills and knowledge for caregiving, promotion of self-care, and reflection on the AA family and community as resources for care. PMID:26953236
Van Houtven Courtney
Full Text Available Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient
José Mauricio Ocampo
Full Text Available Objectives: To determine the frequency and the associated factors with the presence of care burden imposed by dependent elderly of Buenaventura, Valle; Colombia. Design: A pilot cross-sectional study. Patients and methods: Between March and May of 2006, data were collected on 35 over 60 years old patients who live in the community of Buenaventura, with a score in the Barthel index Results: The mean age and the standard deviation of the patient group was 78.9±10 years. There was a larger proportion of women (68.5%. In the care givers, the regular age and the standard deviation was 49.4±18.8 years, where 91% were women. It was found that for 54.2% of the caregivers there was no burden at all, 40% of them had a minimum burden and the others a greater burden. Bivariate analysis between the care giver’s burden and the number of chronic disease, the score on the minimental test, elderly depression and the family APGAR, resulted in statistic association (p Conclusions: There is an association between aged people, dependent in basic common day activities related with physical aspects, and care giver’s burden. Being the caregivers mostly family members, further studies must be focused on identifying and realizing interventions to prevent or limit the decrease of declining mental health and loss of life quality and the consequent increase of the care giver’s burden.
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This case report shares a nursing experience assisting a caregiver of a patient with a head injury to reduce her stressors. The period of care ran from November 4 to January 7, 2008. The author collected subjective and objective data through observations and interviews with the caregiver using the Neuman systemic model in a hospital intensive care unit. Data was analyzed to identify key healthcare problems, which included anxiety, caregiver role strain and changes in family dynamics. The stressors involved in each were applied to the above nursing problems in order to deliver individualized nursing care to the caregiver based on mutual trust. Such transferred care skills, taught the caregiver how to face main stressors, decreased anxiety, and helped the caregiver build up her confidence and ability to take care of her daughter. Such was complemented by leveraging hospital and external resources, which helped the caregiver solve problems and improve family dynamics during the crisis. The approach helped the entire family adjust and reorient. PMID:20405402
Guadalupe Nieves Sevilla Gómez
Full Text Available Background: caregivers are people without professional training who receive courses and seminars in schools for home caregivers and social institutions since their entry into the system. However, their training as health promoters is still inadequate.Objective: to design a program for training caregivers in senior citizens´ homes as health promoters. Methods: a pedagogical research was carried out in the province of Cienfuegos aimed to design a training program for caregivers. A survey to determine the training needs of caregivers was conducted together with a semi-structured interview to determine the experiences and knowledge provided to them. The focus group technique with ten specialists of the National Comprehensive Program for the Elderly and directors of senior citizens´ homes was used to determine the health promotion actions included in the training of these personnel. Results: a program for training caregivers as health promoters was designed. It consists of a course (theoretical and practical update and practical training in participatory techniques for the elderly divided into 96 hours. The rationale, feasibility, relevance, sustainability, transferability, characterization and objectives of the program are described as well as the literature to be used. Conclusions: the design and implementation of this practical and participatory program will allow assuming health promotion as part of the caregivers´ work in senior citizens´ homes.
Full Text Available Background: Stroke is one of the most prevalent causes of adult disability and handicap. Informal caregivers play an important role in poststroke care. However, informal caregivers may experience strain, which threatens the recovery of stroke subjects. This study aimed to describe changes in strain experienced by informal caregivers from 3 to 6 months after the stroke, and identify the predicting factors.Methods: We recruited pairs of inpatients with ischemic stroke and informal caregivers from a tertiary referral hospital and interviewed them at 3 and 6 months after the stroke. Caregiver strain was evaluated using the Caregiver Strain Index (CSI, with a CSI Ÿ 7 indicating considerable caregiver strain. Various factors associated with caregiver strain were analyzed using generalized estimating equations.Results: Eighty-nine stroke patients and caregivers completed the study. Considerable strain was reported in 46% and 43% of the caregivers at the 3rd and 6th month, respectively. Patient factors such as severe disabilities (Barthel Index ŷ 60, poor cognition (Mini-Mental State Examination ŷ 23, depression (Beck Depression Inventory [BDI] Ÿ 10, and recurrent stroke were predictors for caregiver strain. Caregiver factors, such as changed employment status, help from formal caregivers, and depression (BDI Ÿ 10 were also associated with considerable caregiver strain.Conclusions: Nearly 50% of caregivers experienced considerable strain. Interventions aimed at reducing the caregivers’ strain should focus on enhancing the functional and emotional status of stroke subjects, prevention of recurrent stroke, and efficient management of depression symptoms in caregivers.
Ghazvini, Alisa S.; Readdick, Christine, A.
Investigated the relationship between parent-caregiver communication and child care quality in 12 child care centers representing different types of sponsorship. Compared to parents, caregivers rated all forms of parent-caregiver communication as more frequent and as more important. Frequency of parent-caregiver communication and quality of child…
Røhder, Katrine; Trier, Christopher Høier; Brennan, Jessica;
to the child´s attachment system. The Prenatal Caregiving Experiences Questionnaire (PCEQ) (Brennan, George, & Solomon, 2013) is the first questionnaire that directly assesses prenatal caregiving representation. This poster presentation brings together different researchers who use the instrument in ongoing......The caregiving system was originally described by Bowlby and has been conceptually developed by George and Solomon (1989; 1996; 2008). It is “the other half” of the social bond between parent and child and is described as a behavioural system in its own right that is reciprocally linked...
In October 2004, a case of caregiver-fabricated illness in a child was identified in a children's hospital in the Midwest. This case report begins with a discussion and explanation of the various nomenclatures that have been used by the healthcare community such as Munchausen syndrome by proxy, factitious disorder by proxy, medical child abuse, and caregiver-fabricated illness in a child. A discussion of case facts is then presented, which includes key concepts that nurses should know regarding a diagnosis of caregiver-fabricated illness in a child and the interventions that should be taken. PMID:25900681
Cumming, John McClure
Caregiver burden and distress have been associated with informal caregivers. Research findings on the specific aspects of the caregiving role that influence burden are mixed. Factors such as amount of time per day giving care and specific characteristics about the disease progression have been linked to caregiver burden and distress. Other…
Corcoran, Mary A.
Purpose: An increasing number of elderly individuals are diagnosed with Alzheimer’s disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a “cultural activity,” and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking–action process has important implications for future research and service. Reasoned action theory provides empirical evidence that att...
Wittenberg-Lyles, Elaine; OLIVER, DEBRA PARKER; Demiris, George; Washington, Karla; Regehr, Kelly; Wilder, Heidi M.
This paper reports findings from a pilot study that enabled family caregivers to use videophone technology to participate in hospice interdisciplinary team meetings. The goal of the study was to ascertain which issues were important to caregivers and the hospice team. A qualitative content analysis of video-recorded team meetings between team members and caregivers was conducted. In a sample of 12 caregivers in 36 discussions, caregivers asked a total of 137 questions, with the majority as Ye...
Jain, FA; Nazarian, N.; Lavretsky, H.
Objectives: Family dementia caregivers are at high risk of depression and burnout. We assessed the feasibility of Central Meditation and Imagery Therapy for Caregivers (CMIT-C), a novel 8-week group meditation and guided imagery group therapy program, for dementia caregivers reporting stress because of caregiving responsibilities. Methods: Twelve family dementia caregivers enrolled in CMIT-C. Primary outcomes included depression and anxiety, and secondary outcomes included insomnia, quality o...
Kally, Zina; Cote, Sarah D; Gonzalez, Jorge; Villarruel, Monica; Cherry, Debra L; Howland, Susan; Higgins, Melinda; Connolly, Lora; Hepburn, Kenneth
This article reports on the impact of the Savvy Caregiver Program (SCP) on English-speaking caregivers of Hispanic, Black/African American, and Asian/Pacific Islander descent. Caregivers completed a questionnaire prior to study enrollment, at 6 and 12 months postenrollment. Caregivers in all 3 ethnic groups showed more caregiver competence, reduced depression, greater tolerance for care recipients' memory problems, better management of their overall situation, and improved perception of that situation 6 months and 12 months post-enrollment. The study demonstrates that in the sample studied the SCP was as effective in helping ethnically diverse caregivers as it has shown to be with Caucasian caregivers. PMID:24820315
Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali
This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving. PMID:25602761
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Lohne, Vibeke; Høy, Bente; Wilhelm Rehnsfeldt, Arne;
This qualitative study is focusing on dignity in nursing homes from the perspective of family caregivers. Dignity is a complex concept and central to nursing. Dignity in nursing homes is a challenge, according to research. Family caregivers are frequently involved in their family members’ daily...... experiences at the nursing home. This Scandinavian application study has a descriptive and explorative design. Twenty-nine family caregivers were included. A phenomenological-hermeneutic approach was used to understand the meaning of the narrated text. The interpretations revealed two main themes: “One should......, but still important in nursing homes. It seems therefore important to further investigate experiences of family caregivers in the context of nursing homes....
... your medications in the medicine cabinet in the bathroom or in the kitchen because heat and moisture ... caregiving in the U.S.: findings from a national survey. Travis, S. S., et al. (2003). Development of the family ...
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Kahn, Phoebe V.; Wishart, Heather A.; Jennifer S. Randolph; Santulli, Robert B.
Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-t...
Riddell, R Pillai; Racine, Nicole
BACKGROUND: Pain is largely accepted as being influenced by social context. Unlike most other developmental stages throughout the lifespan, infancy is marked by complete dependence on the caregiver. The present paper discusses the primary importance of understanding the caregiver context when assessing infant pain expression.OBJECTIVES: Based on a review of research from both the infant pain and infant mental health fields, three lines of evidence are presented. First, pain assessment is as s...
International best-practice guidelines for the management of first-episode psychosis have recommended the provision of psychoeducation for multifamily groups. While there is ample evidence of their efficacy in multiepisode psychosis, there is a paucity of evidence supporting this approach specifically for first-episode psychosis. We sought to determine whether a six-week caregiver psychoeducation programme geared specifically at first-episode psychosis improves caregiver knowledge and attitudes.
Rofail, Diana; Maguire, Laura; Heelis, Rebecca; Colligs, Antje; Lindemann, Marion; Abetz, Linda
Introduction Neural tube defects (NTDs) are the second most common birth defects. Spina bifida (SB) and anencephaly make up approximately 90% of total NTDs. Given the number of infants born with an NTD each year, anyone who provides unpaid care for the child (especially caregivers) is affected. This literature review explores the humanistic burden on caregivers of people with SB, specifically myelomeningocele. Methods A search using PubMed, PsycINFO, and Embase was performed to find studies f...
Clark, Patricia C; Dunbar, Sandra B; Aycock, Dawn M; Courtney, Elizabeth; Wolf, Steven L
Post-stroke memory and behavior changes (MBC) are associated with negative outcomes for stroke survivors and caregivers. This article describes the types of MBC that occur most frequently and caregivers' responses to these behaviors. Data were obtained through in-person interviews and administration of questionnaires to 132 caregivers of first-time stroke survivors 3-9 months after stroke. MBC were measured with a modified version of a Memory and Behavior Problems checklist. On average, caregivers reported 7.7 +/- 3.6 (range 0-17) behaviors. Common stroke survivor MBC included appearing sad or depressed, interrupting the caregiver, and being restless or agitated. These MBC were distressing to caregivers. Caregivers may not recognize some MBC as potential symptoms of depression. In addition, caregiver misunderstanding of the amount of control survivors may have over some behaviors has implications for rehabilitation and caregivers' responses to these changes. PMID:16422042
Dang, Stuti; Badiye, Amit; Kelkar, Geetanjali
Caring for loved ones with dementia is challenging and stressful for family members who have to provide the home care. The responsibility takes a huge physical, emotional, and financial toll on the caregivers, which is known as caregiver burden. The survival and quality of life of the dementia patient have been shown to be related to the well-being of the caregiver. An overwhelmed caregiver can result in premature institutionalization and increased health-care utilization, by both the patients and the caregivers. The physician should periodically assess caregivers for the level of perceived burden, presence of depression and anxiety, social support, behavioral problems in the care recipient, and coping strategies and help the patient and caregiver with advance care planning. Strategies that meld support, education, and practical counseling about common caregiving stresses and community resources seem to mitigate caregiver burden and depression. PMID:19005434
Paul B. Perrin, MS
Full Text Available This study developed and implemented the Transition Assistance Program (TAP for stroke caregivers. The program is composed of (1 skill development, (2 education, and (3 supportive problem solving. Sixty-one dyads (n = 122 participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10. The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07 than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.
Mohammadi, Somayyeh; Dehghani, Mohsen; Khatibi, Ali; Sanderman, Robbert; Hagedoorn, Mariet
Attentional bias to pain among family caregivers of patients with pain may enhance the detection of pain behaviors in patients. However, both relatively high and low levels of attentional bias may increase disagreement between patients and caregivers in reporting pain behaviors. This study aims to p
Moore, Crystal Dea
A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…
J.C. de Schipper; L.W.C. Tavecchio; M.H. van IJzendoorn
In this study, children's attachment relationships with their professional caregivers in center day care were observed for 48 children. We explored whether more positive caregiving was associated with a more secure attachment relationship and whether this association was stronger for more temperamen
Hayslip, Bert, Jr.; Han, GiBaeg; Anderson, Cristina L.
This study examined similarities and differences between active caregivers (adult children and spouses whose family member had Alzheimer's disease) and not-as-yet caregiving adults (adult children and spouses whose family members are older, but do not as yet suffer from Alzheimer's disease). The objective was to determine what factors predict…
Morse, Jennifer Q.; Shaffer, David R.; Williamson, Gail M.; Dooley, W. Keith; Schulz, Richard
The burden of providing informal care to a family member can lead to caregiver depression and potentially harmful caregiving behavior. Given the interpersonal nature of caregiving, the relationship between caregivers and care recipients may impact caregiver responses. We applied attachment theory to understanding caregiver depression, and both potentially harmful and exemplary caregiving responses. We present data from 430 caregivers in the Family Relationships in Late Life (FRILL 2) Project, a multi-site, longitudinal study of caregiving. Age, gender, and model of self were related to caregiving responses, suggesting that model of self may help identify caregivers at risk for poor responses. PMID:21604890
Morse, Jennifer Q.; Shaffer, David R.; Williamson, Gail M.; Dooley, W. Keith; Schulz, Richard
The burden of providing informal care to a family member can lead to caregiver depression and potentially harmful caregiving behavior. Given the interpersonal nature of caregiving, the relationship between caregivers and care recipients may impact caregiver responses. We applied attachment theory to understanding caregiver depression, and both potentially harmful and exemplary caregiving responses. We present data from 430 caregivers in the Family Relationships in Late Life (FRILL 2) Project,...
Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep
All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly
Sharma, Nidhi; Chakrabarti, Subho; Grover, Sandeep
All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family-caregiver. Stress-coping theories propose that women are more likely to be exposed to caregiving stressors, and are likely to perceive, report and cope with these stressors differently from men. Many studies, which have examined gender differences among family-caregivers of people with mental illnesses, have concluded that women spend more time in providing care and carry out personal-care tasks more often than men. These studies have also found that women experience greater mental and physical strain, greater caregiver-burden, and higher levels of psychological distress while providing care. However, almost an equal number of studies have not found any differences between men and women on these aspects. This has led to the view that though there may be certain differences between male and female caregivers, most of these are small in magnitude and of doubtful clinical significance. Accordingly, caregiver-gender is thought to explain only a minor proportion of the variance in negative caregiving outcomes. A similar inconsistency characterizes the explanations provided for gender differences in caregiving such as role expectations, differences in stress, coping and social support, and response biases in reporting distress. Apart from the equivocal and inconsistent evidence, there are other problems in the literature on gender differences in caregiving. Most of the evidence has been derived from studies on caregivers of elderly people who either suffer from dementia or other physical conditions. Similar research on other mental illnesses such as schizophrenia or mood disorders is relatively scarce. With changing demographics and social norms men are increasingly
Dich, Nadya; Lange, Theis; Head, Jenny;
OBJECTIVES: Studies investigating health effects of work and family stress usually consider these factors in isolation. The present study investigated prospective interactive effects of job strain and informal caregiving on allostatic load (AL), a multisystem indicator of physiological dysregulat......OBJECTIVES: Studies investigating health effects of work and family stress usually consider these factors in isolation. The present study investigated prospective interactive effects of job strain and informal caregiving on allostatic load (AL), a multisystem indicator of physiological...... dysregulation. METHODS: Participants were 7007 British civil servants from the Whitehall II cohort study. Phase 3 (1991-1994) served as the baseline, and Phases 5 (1997-1999) and 7 (2002-2004) served as follow-ups. Job strain (high job demands combined with low control) and caregiving (providing care to aged......). Regardless of job strain, participants with low caregiving burden (below sample median) had lower subsequent AL levels than did non-caregivers (b = -0.22, 95% confidence interval = -0.06--0.37). CONCLUSIONS: The study provides some evidence for adverse effects of stress at work combined with family demands...
Phoebe V. Kahn
Full Text Available Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI and the Caregiver Section of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS-C. Scores on the FS-ADS-C and ZBI were positively correlated (rs=.51, p<.001. Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80 = −4.37, p<.001 and more burden on the ZBI (t(80 = −2.68, p=.009 compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8 = −2.22, p=.034 and more burden on the ZBI (t(80 = −2.65, p=.010 than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.
Home care agencies, recognizing the important part that the family caregiver plays in their new operating plans, are incorporating family caregivers in a way that allows everyone to benefit. PMID:11588878
... caregiver: Hoarding Failure to take essential medications or refusal to seek medical treatment for serious illness Leaving ... either by the caregiver or the person receiving care. If your parent is in a long-term ...
... html Caregivers Often Give Up Necessities to Cover Alzheimer's Costs Many skip food and health care, cut ... 30, 2016 (HealthDay News) -- Caring for someone with Alzheimer's disease means caregivers often skimp on their own ...
Branger, Camille; Burton, Rachel; O'Connell, Megan E; Stewart, Norma; Morgan, Debra
Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role. PMID:24951255
Lund, Line; Ross, Lone; Petersen, Morten Aagaard;
PURPOSE: In order to meet the caregiving challenges, informal caregivers often need a substantial level of interaction with health care professionals (HCPs). This study investigated to which extent the cancer caregivers' needs regarding the interaction with HCPs are met and the associations between...... dissatisfaction with the interaction and socio-demographic and disease-related variables. METHODS: In a cross-sectional questionnaire study, cancer patients with various diagnoses and disease stages were invited to pass on the 'cancer caregiving tasks, consequences and needs questionnaire' (CaTCoN) to up to three...... optimal involvement of the caregivers in the patients' disease, treatment and/or care (30 % were dissatisfied), attention to the caregivers' wellbeing (e.g., 51 % of the caregivers reported that HCPs only sometimes or rarely/never had shown interest in how the caregivers had been feeling), and provision...
Blieszner, Rosemary; Alley, Janet M.
Provides overview of impact of caregiving on families, discusses health policies that have led to limitations in formal support services, and identifies resources available to assist professional and caregiving families. (Author)
... nlm.nih.gov/medlineplus/news/fullstory_158780.html Depression Strikes, Stays With Many Caregivers of Critically Ill ... News) -- Caregivers for the critically ill often suffer depression that lingers long after their loved one's hospital ...
... page: https://medlineplus.gov/news/fullstory_158780.html Depression Strikes, Stays With Many Caregivers of Critically Ill ... News) -- Caregivers for the critically ill often suffer depression that lingers long after their loved one's hospital ...
Ågård, Anne Sophie; Egerod, Ingrid; Tønnesen, Else;
rehabilitation in general hospital wards, rehabilitation facilities and at home. Consequently, millions of spouses become informal caregivers. Little is known, however, about the concrete challenges spouses face in post-intensive care unit everyday life. DESIGN: Explorative, qualitative grounded theory study...... caregiver role. Post-ICU caregiving comprised five patient dimensions: observing, assisting, coaching, advocating and managing activities. CONCLUSIONS: Spouses play a vital and multifaceted role in post-intensive care unit recovery. The findings can inform healthcare professionals in their efforts to...... prepare intensive care unit patients' families for the time following intensive care unit and hospital discharge. Hospital staff, rehabilitation experts and primary care professionals must acknowledge spouses' important contribution from intensive care unit admission throughout recovery....
Full Text Available Alessandro Iavarone,1,2 Antonio Rosario Ziello,3,4 Francesca Pastore,3 Angiola Maria Fasanaro,3 Carla Poderico5 1Neurological and Stroke Unit, CTO Hospital, 2Italian Association on Alzheimer's Disease (AIMA, 3Memory Clinic, Neurological Unit, AORN Cardarelli Hospital, Naples, Italy; 4Clinical Research, Telemedicine and Telepharmacy Centre, University of Camerino, Camerino, Italy; 5Department of Psychology, Second University of Naples, Caserta, Italy Background: Alzheimer’s disease (AD causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods: Eighty-six caregivers received the Caregiver Burden Inventory (CBI and the State-Trait Anxiety Inventory (STAI Y-1 and Y-2. The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS, according to the model proposed by Endler and Parker in 1990.Results: The CBI scores (overall and single sections were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2 correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion: AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored
Hinton, Ladson; Tran, Jane NhaUyen; Tran, Cindy; Hinton, Devon
This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key...
Beinart, N.; Weinman, J; Wade, D; Brady, R
Background Caring for a patient with Alzheimer's disease (AD) is associated with poor quality of life and deteriorating health for the caregiver. Methods This comprehensive review was performed to investigate the current literature on caregiver burden, factors affecting caregiver burden and the effectiveness of different types of intervention. Results Successful psychoeducational interventions for caregivers have included provision of information about AD, care planning, advice about patient ...
Sales, S.; Mathews, P.; Gamblin, D.; Gee, S.
The Kaiser Permanente Northern California Region (KPNCR) CareGiver Workstation (CGW) Project's mission is to develop and implement a clinical workstation system that will enhance each caregiver-member interaction and aid in the decision-making processes of direct patient care in the inpatient and outpatient settings. The requirements analysis approach for CareGiver Workstation (CGW) is based on the belief that extensive caregiver involvement will provide a better understanding of the diverse ...
Lara de Sa Neves Loureiro
Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.
Holtzman, Susan; Abbey, Susan E; Singer, Lianne G; Ross, Heather J; Stewart, Donna E
This study investigated the impact of patient and caregiver gender on caregiver depressive symptoms. Caregivers' use of relationship-focused coping and dimensions of caregiver burden were examined as potential mediators of gender differences in depressive symptoms. Ninety-three organ transplant candidates and their caregivers completed written questionnaires (N = 186). Females providing care to male patients reported significantly higher depressive symptoms than the other caregivers in our sample. Multiple mediation analyses revealed that less support from family members and a greater negative health impact of caregiving helped explain these gender differences. Women caring for men were also perceived as more overprotective, but this did not explain gender differences in depression. Results highlight the benefits of a contextual, dyadic approach to studying caregiver distress. PMID:21421644
Chwalisz, Kathleen; Kisler, Valerie
Reports the results of a study measuring the construct "caregiver burden," as traditionally defined versus when compared to perceived stress. The Perceived Stress Scale was found to be a better predictor of mental and physical health status for 107 spouse caregivers of persons with brain injuries than was a traditional measure of caregiver burden.…
Dunst, Carl J.; Kassow, Danielle Z.
Findings from two research syntheses of the relationship between caregiver sensitivity and secure infant attachment and one research synthesis of factors associated with increased caregiver use of a sensitive interactional style are presented. The main focus of analysis was the extent to which different measures of caregiver contingent social…
Vetter, Rheba E.; Myllykangas, Susan A.; Donorfio, Laura K. M.; Foose, Alice K.
A caregiver is one who provides formal or informal services to a person with physical disabilities or a long-term illness. The day-to-day responsibilities place inordinate amounts of stress on caregivers. Thus, caregivers need mental and physical support. Creative movement enables dancers to express anxieties through movement and to experience an…
Campbell, Philippa H.; Coletti, Catherine Ehret
The purpose of this study was to identify the extent to which multidiscipline early intervention providers identified and demonstrated caregiver-teaching strategies. A total of 78 providers submitted 205 videotaped segments to illustrate 1 of 5 caregiver-teaching strategies (i.e., demonstration; caregiver practice with feedback; guided practice;…
... Documents#0;#0; ] Proclamation 9053 of October 31, 2013 National Family Caregivers Month, 2013 By the... Family Caregivers Month, we thank these tireless heroes for the long, challenging work they perform... cases caring for both young children and aging parents, our Nation's caregivers need and deserve...
Goins, R. Turner; Spencer, S. Melinda; McGuire, Lisa C.; Goldberg, Jack; Wen, Yang; Henderson, Jeffrey A.
Purpose: With a sample of American Indian adults, we estimated the prevalence of adult caregiving, assessed the demographic and cultural profile of caregivers, and examined the association between cultural factors and being a caregiver. This is the first such study conducted with American Indians. Design and Methods: Data came from a…
Feeley, Christine A.; Turner-Henson, Anne; Christian, Becky J.; Avis, Kristin T.; Heaton, Karen; Lozano, David; Su, Xiaogang
Little is known about the influence of sleep quality, stress, and caregiver burden on quality of life in maternal caregivers of young children with bronchopulmonary dysplasia (BPD). In 61 maternal caregivers (mean age 29.59 years) of young children with BPD (mean age 13.93 months), caregivers reported sleeping a mean of 5.8 hours, and significant correlations were found between sleep quality and depressive symptoms and stress, as well as an inverse correlation with quality of life. Sleep qual...
Reed, Catherine; Belger, Mark; Dell'Agnello, Grazia; Wimo, Anders; Argimon, Josep Maria; Bruno, Giuseppe; Dodel, Richard; Haro, Josep Maria; Jones, Roy W.; Vellas, Bruno
Background/Aims To examine factors influencing the caregiver burden in adult-child and spousal caregivers of community-dwelling patients with Alzheimer's disease (AD). Methods Baseline data from the 18-month, prospective, observational GERAS study of 1,497 patients with AD in France, Germany, and the UK were used. Analyses were performed on two groups of caregivers: spouses (n = 985) and adult children (n = 405). General linear models estimated patient and caregiver factors associated with su...
Hagedoorn, M.; Sanderman, R.; Buunk, B.P.; Wobbes, T.
Objectives. This study examined a possible explanation for the frequently reported finding that female caregivers perceive more psychological distress than do male caregivers. Our 'identity-relevant stress' hypothesis asserts that feelings of incompetence with respect to caregiving are more strongly
K.O.W. Helmerhorst; J.M. Riksen-Walraven; H.J. Vermeer; R.G. Fukkink; L.W.C. Tavecchio
Research Findings: High-quality caregiver-child interactions constitute the core of high-quality child care for young children. This article describes the background and development of the Caregiver Interaction Profile (CIP) scales to rate 6 key skills of caregivers for interacting with 0- to 4-year
Helmerhorst, Katrien O. W.; Riksen-Walraven, J. Marianne; Vermeer, Harriet J.; Fukkink, Ruben G.; Tavecchio, Louis W. C.
Research Findings: High-quality caregiver-child interactions constitute the core of high-quality child care for young children. This article describes the background and development of the Caregiver Interaction Profile (CIP) scales to rate 6 key skills of caregivers for interacting with 0-to 4-year-old children in child care centers: sensitive…
Dhar, V Erica
This article concerns how globalization and the aging of the world's population are affecting the already complex issue of intergenerational transnational caregiving. Globalization has caused an increase in workforce mobility with large numbers of individuals seeking employment overseas. This, coupled with increased longevity globally, has resulted in many workers leaving their elderly parents in need of care in their home countries. This has spawned caregiving across national borders, or caring for family relations across nations. Currently in the United States, not enough emphasis is given to family caregiving. Data compiled by AARP and the National Alliance for Caregiving estimate the economic value for this group of family caregivers in 2007 to be $375 billion, accounting for 34-52 million family caregivers per given year. This does not include those families who are transnational caregivers. The seminal work in this emerging field has been done by social anthropologists Loretta Baldassar, Cora Velekoop Baldock, and Raelene Wilding, who have defined the components of transnational caregiving based on an ethnographic study using qualitative data to study nine immigrant communities in Western Australia. Although their research focused on caregiving from a distance, additional work has been added to the discussion by introducing the element of "care drain" and further cultural perspectives. Therefore, this research is an exploratory study on intergenerational transnational caregiving within the context of the changing world and its demographics. Within the context of globalization and global aging, the following questions are addressed: What is the significance of family caregiving? What is a transnational? How has technology changed "transnationalism" today? What are the elements that comprise transnational caregiving? How does culture play a role in transnational caregiving? What are some of the national initiatives undertaken by governments to aid in workforce
Daly, M E
The classical notions of 'virtue' and 'leisure' offer excellent insights into the essentially moral nature of medical practice. This is especially evident in the understanding that professional caregiving has the potential to enhance the moral character as well as the moral awareness of the practitioner. Reflective awareness of the moral nature of the caregiving process can also contribute to coping with negative stress, which almost always has its origins in frustrations rooted in moral quan...
Full Text Available Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.
Namkoong, Kang; DuBenske, Lori L.; Shaw, Bret R.; Gustafson, David H; Hawkins, Robert P.; Shah, Dhavan V.; McTavish, Fiona M.; Cleary, James F.
Numerous studies have investigated the effect of Interactive Cancer Communication Systems (ICCSs) on system users’ improvements in psychosocial status. Research in this area, however, has focused mostly on cancer patients, rather than caregivers, and the direct effects of ICCSs on improved outcomes, rather than the psychological mechanisms of ICCS effects. In an effort to understand the underlying mechanisms, this study examines the mediating role of perceived caregiver bonding in the relatio...
Wittenberg-Lyles, Elaine; Washington, Karla; Demiris, George; Oliver, Debra Parker; Shaunfield, Sara
Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver's support needs and include assessment on the type of support to be offered. PMID:24345081
... gov/Go4Life Caregivers and Exercise—Take Time for Yourself Taking care of yourself is one of the most important things you ... all at once. l Make an appointment with yourself to exercise. Set aside specific times and days ...
Direct caregivers in nursing homes are the certified nursing assistants (CNAs) who provide the majority of hands-on care. This study administered a knowledge instrument to a sample of CNAs () employed at nursing homes in a northeastern city to evaluate their knowledge in the domains of aging, cognition, and mental health. This study found that…
This podcast discusses role of family caregivers and the importance of protecting their health. It is primarily targeted to public health and aging services professionals. Created: 12/23/2009 by National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). Date Released: 12/23/2009.
... Caring for an older family member often requires teamwork. Set up a meeting with your family team and the care recipient, if possible, to discuss the type of care needed and caregiving responsibilities. Caring for ... family member often requires teamwork. While one sibling might be local and take ...
Females care for individuals with chronic illness more commonly than males and have different attitudes to illness. Additionally, they experience greater burden and reduced quality of life, when compared to their male counterparts. Since knowledge has been shown to be related to burden, we sought to determine whether there were gender differences in knowledge acquisition during a six-week caregiver psychoeducation programme (CPP).
Shiatsu therapy is a manual discipline originating from traditional Chinese medicine. It is developing as an interesting form of support in the fight against stress and chronic fatigue. Shiatsu is used in some hospitals to support not only patients but also caregivers, to prevent burnout. PMID:26861088
Minkler, Meredith; And Others
Brookdale Grandparent Caregiver Information Project tracked 124 community interventions/service programs for grandparents raising grandchildren. Found that, among programs, lack of funding and institutional support, and the consequent inability to provide child care, were among key obstacles faced, whereas while sponsorship by health and social…
Campell, D D; Travis, S S
Of those spousal caregivers who identified a time when they most needed assistance, morning or afternoon time periods appeared to be most problematic. Spousal caregivers who reported receiving respite time on the weekends identified adult children as the informal support person most often available. However, more than half of the caregivers reported having no respite time during the weekend. Differences in the ways spousal caregivers spent their respite time on the weekends, if available, varied by gender, length of tenure as a caregiver, and age. PMID:10461273
Namkoong, Kang; DuBenske, Lori L; Shaw, Bret R; Gustafson, David H; Hawkins, Robert P; Shah, Dhavan V; McTavish, Fiona M; Cleary, James F
Numerous studies have investigated the effect of Interactive Cancer Communication Systems (ICCSs) on system users' improvements in psychosocial status. Research in this area, however, has focused mostly on cancer patients, rather than on caregivers, and on the direct effects of ICCSs on improved outcomes, rather than on the psychological mechanisms of ICCS effects. To understand the underlying mechanisms, this study examines the mediating role of perceived caregiver bonding in the relation between one ICCS (the Comprehensive Health Enhancement Support System [CHESS]) use and caregivers' coping strategies. To test the hypotheses, a secondary analysis of data was conducted on 246 caregivers of lung cancer patients. These caregivers were randomly assigned to (a) the Internet, with links to high-quality lung cancer websites, or (b) access to CHESS, which integrated information, communication, and interactive coaching tools. Findings suggest that perceived bonding has positive effects on caregivers' appraisal and problem-focused coping strategies, and it mediates the effect of ICCS on the coping strategies 6 months after the intervention has begun. PMID:22004055
Full Text Available With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care. Opsomming Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer ‘n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie ‘n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi- gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is
Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard
Objective To examine the unique contribution of social support to burden in caregivers of adults aging with spinal cord injuries (SCI). Design Secondary analyses of cross-sectional data from a large cohort of adults aging with SCI and their primary caregivers. Setting Multiple community locations in Pittsburgh, PA, and Miami, FL. Participants Caregivers of community-dwelling adults aging with SCI (n=173) were interviewed as part of a multisite randomized clinical trial. The mean age of caregivers was 53 years (SD=15) and of care-recipients 55 years (SD=13). Interventions Not applicable. Main Outcome Measures The primary outcome was caregiver burden measured with the Abridged Version of the Zarit Burden Interview. A hierarchical multiple regression analysis examined social supports (social integration, received social support, and negative social interactions) effect on burden in caregivers of adults aging while controlling for demographic characteristics and caregiving characteristics. Results After controlling for demographic characteristics and caregiving characteristics, social integration (β̂ =−.16, P<.05), received social support (β̂ =−.15, P<.05), and negative social interactions (β̂ =.21, P<.01) were significant independent predictors of caregiver burden. Conclusions Findings demonstrate that social support is an important factor associated with burden in caregivers of adults aging with SCI. Social support should be considered for assessments and interventions designed to identify and reduce caregiver burden. PMID:22824248
Fong, Hiu-fai; Bennett, Colleen E; Mondestin, Valerie; Scribano, Philip V; Mollen, Cynthia; Wood, Joanne N
The objective of this study was to describe caregiver perceptions about mental health services (MHS) after child sexual abuse (CSA) and to explore factors that affected whether their children linked to services. We conducted semi-structured, in-person interviews with 22 non-offending caregivers of suspected CSA victimschild advocacy center in Philadelphia. Purposive sampling was used to recruit caregivers who had (n=12) and had not (n=10) linked their children to MHS. Guided by the Health Belief Model framework, interviews assessed perceptions about: CSA severity, the child's susceptibility for adverse outcomes, the benefits of MHS, and the facilitators and barriers to MHS. Interviews were audio-recorded, transcribed, coded, and analyzed using modified grounded theory. Recruitment ended when thematic saturation was reached. Caregivers expressed strong reactions to CSA and multiple concerns about adverse child outcomes. Most caregivers reported that MHS were generally necessary for children after CSA. Caregivers who had not linked to MHS, however, believed MHS were not necessary for their children, most commonly because they were not exhibiting behavioral symptoms. Caregivers described multiple access barriers to MHS, but caregivers who had not linked reported that they could have overcome these barriers if they believed MHS were necessary for their children. Caregivers who had not linked to services also expressed concerns about MHS being re-traumatizing and stigmatizing. Interventions to increase MHS linkage should focus on improving communication with caregivers about the specific benefits of MHS for their children and proactively addressing caregiver concerns about MHS. PMID:26602155
Jansen, Jens Einar; Lysaker, Paul H.; Harder, Susanne;
Objectives While caregivers of persons with first-episode psychosis often report a range of negative experiences, little is known about what psychological factors are involved. The aim of this study was to examine how caregivers' general wellbeing, emotional overinvolvement and metacognition...... influenced their reports of both positive and negative caregiving experiences. Design A prospective consecutive cross-sectional study. Methods Forty caregivers of patients with first-episode psychosis were interviewed using semi-structured interview and questionnaires. Results Greater levels of distress...... and overinvolvement were associated with more negative experiences of caregiving while greater metacognitive capacity was associated with more positive experiences of caregiving. Conclusions The experience of positive and negative aspects of caregiving seems to be associated with different variables. Greater...
Hinton, Ladson; Tran, Jane Nhauyen; Tran, Cindy; Hinton, Devon
This paper focuses on the role of religion and spirituality in dementia caregiving among Vietnamese refugee families. In-depth qualitative interviews were conducted with nine Vietnamese caregivers of persons with dementia, then tape-recorded, transcribed, and analyzed for emergent themes. Caregivers related their spirituality/religion to three aspects of caregiving: (1) their own suffering, (2) their motivations for providing care, and (3) their understanding of the nature of the illness. Key terms or idioms were used to articulate spiritual/religious dimensions of the caregivers' experience, which included sacrifice, compassion, karma, blessings, grace and peace of mind. In their narratives, the caregivers often combined multiple strands of different religions and/or spiritualities: Animism, Buddhism, Taoism, Confucianism and Catholicism. Case studies are presented to illustrate the relationship between religion/spirituality and the domains of caregiving. These findings have relevance for psychotherapeutic interventions with ethnically diverse populations. PMID:20930949
Stalder, Tobias; Tietze, Antje; Steudte, Susann; Alexander, Nina; Dettenborn, Lucia; Kirschbaum, Clemens
Hair cortisol concentrations (HCC) are assumed to reflect integrated long-term cortisol levels and have been proposed as a promising endocrine marker of chronic psychological stress. The current study examined HCC in relation to caregiving burden, a well-established naturalistic model of chronic stress in humans. HCC and relevant psychosocial data were examined in 20 caregivers of relatives with dementia and 20 non-caregiver controls matched for age and sex. Results revealed elevated HCC in dementia caregivers compared to non-caregiver controls (F(1,38)=4.4, p=.04, ηp2=.10). Further, within caregivers, a trend for a positive association of HCC with self-reported caregiving burden (r=.43, p=.058) and a positive association with depressiveness (r=.48, p=.045) were observed. No other associations between HCC and subjective measures were seen. These findings concur with the notion that HCC sensitively capture endocrine aberrations in stress-exposed groups. PMID:25001953
Smith, G. Rush; Williamson, Gail M.; Miller, L. Stephen; Schulz, Richard
This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver de...
Singh, Nirbhay N; Lancioni, Giulio E; Karazsia, Bryan T; Myers, Rachel E
Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS) training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals' behaviors, and an administrative outcome. When compared to pre-MBPBS training, the MBPBS training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof-of-concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation. PMID:26903906
Nirbhay N. Singh
Full Text Available Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals’ behaviors, and an administrative outcome. When compared to pre-MBPBS training, the training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof of concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation.
Nathália R. S. Kimura
Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.
Srivastava, Garima; Tripathi, Rakesh Kumar; Tiwari, Sarvada Chandra; Singh, Bhupinder; Tripathi, Shailendra Mohan
Background: Dementia is the most devastating cognitive disorder of the elderly and needs extra attention to care. Therefore, this study was conducted to identify the caregiver burden of dementia key caregivers and their Quality of Life (QOL). Materials and Methods: Sample consisted of purposively selected 24 dementia key caregivers fulfilling the inclusion criteria from the in-patient of the Department of Geriatric Mental Health, King George's Medical University, Lucknow, Uttar Pradesh, India. Zarit Burden Interview and World Health Organization QOL-BREF were administered. Mean, standard deviation, t-test, Chi-square with Yate's correction were used to analyze the data. Results: All key caregivers felt mild to moderate level of burden. Gender-wise significant difference was found on burden area of expectation (P < 0.05). Mean scores on physical, psychological, social relationship, and environmental QOL were found to be on lower side. A negative correlation was found between burden and QOL. Conclusion: Professional help and supportive psychotherapy can be provided to the key caregivers of dementia patients to reduce their burden, strengthen the coping skill and thus improve their QOL. PMID:27114625
Full Text Available Background: Dementia is the most devastating cognitive disorder of the elderly and needs extra attention to care. Therefore, this study was conducted to identify the caregiver burden of dementia key caregivers and their Quality of Life (QOL. Materials and Methods: Sample consisted of purposively selected 24 dementia key caregivers fulfilling the inclusion criteria from the in-patient of the Department of Geriatric Mental Health, King George′s Medical University, Lucknow, Uttar Pradesh, India. Zarit Burden Interview and World Health Organization QOL-BREF were administered. Mean, standard deviation, t-test, Chi-square with Yate′s correction were used to analyze the data. Results: All key caregivers felt mild to moderate level of burden. Gender-wise significant difference was found on burden area of "expectation" (P < 0.05. Mean scores on physical, psychological, social relationship, and environmental QOL were found to be on lower side. A negative correlation was found between burden and QOL. Conclusion: Professional help and supportive psychotherapy can be provided to the key caregivers of dementia patients to reduce their burden, strengthen the coping skill and thus improve their QOL.
Shaji, K. S.; George, Roy K.; Prince, Martin J.; K S Jacob
Background: Dementia care in developing countries will continue to be provided by co-resident caregivers at home. Behavioral and Psychological Symptoms of Dementia (BPSD) are difficult to manage at home. Interventions leading to reduction or remission of reduction or remission of BPSD will be of immense help in the management of these patients. Materials and Methods: The nature and prevalence of BPSD in a community sample of patients with dementia was assessed by a clinician. The impact of th...
In this work, we study whether labour and leisure costs reported by informal caregivers must be analysed separately, using two comparable Spanish samples, for the years 1994 and 2004. We do this since informal care introduces an additional time constraint on the individual, which complicates the usual trade-off between leisure and work. We find that labour and leisure costs cannot always be identified separately.
Full Text Available Abstract Introduction Data on caregiver strain and depression of principal caregivers of patients with mental illnesses are few in developing countries. Findings from developed countries cannot be applied directly to developing countries as culture specific factors may influence the outcome. Methods A prospective study was carried out in the University Psychiatry Unit of the National Hospital of Sri Lanka (NHSL to identify symptoms of depression, caregiver strain and dissatisfaction with life in caregivers of patients with schizophrenia and bipolar affective disorder. Participants were assessed using the Center for Epidemiological Studies – Depression Scale, Satisfaction with Life Scale and the Modified Caregiver Strain Index. Results and discussion Eighty caregivers were interviewed (males; 36, 45%. Symptoms of depression were significant in 37.5%, while 48.8% had unsatisfactory scores on the Satisfaction with Life Scale. Depression and higher caregiver strain were associated with spending more time with the patient, interruption to work, disputes with relations, being assaulted by patient and self admission of needing professional help to overcome mental stress. Conclusion This study identified several associations for depression and increased caregiver strain among caregivers in a subset of patients with mental disorder in Sri Lanka. These can be used as markers to screen and increase pretest probability to identify caregivers needing help rather than applying the cumbersome questionnaires to all.
Chambers, Mary G.; Connor, Samantha L.; McGonigle, Mary; Diver, Mike G.
Objective: This report describes the design and evaluation of a software application to help carers cope when faced with caring problems and emergencies. Design: The design process involved users at each stage to ensure the content of the software application was appropriate, and the research team carefully considered the requirements of disabled and elderly users. Measurements: Focus group discussions and individual interviews were conducted in five European countries to ascertain the needs of caregivers in this area. The findings were used to design a three-part multimedia software application to help family caregivers prepare to cope with sudden, unexpected, and difficult situations that may arise during their time as a caregiver. This prototype then was evaluated via user trials and usability questionnaires to consider the usability and acceptance of the application and any changes that may be required. Results: User acceptance of the software application was high, and the key features of usability such as content, appearance, and navigation were highly rated. In general, comments were positive and enthusiastic regarding the content of the software application and relevance to the caring situation. Conclusion: The software application has the potential to offer information and support to those who are caring for the elderly and disabled at home and to help them prepare for a crisis. PMID:12807815
Avieli, Hila; Ben-David, Sarah; Levy, Inna
This study is one of the few that has compared volunteers' professional quality of life (PQL), which includes secondary traumatic stress (STS), burnout, and compassion satisfaction (CS), to those of professional caregivers. In addition, the research compared the ethical behavior of volunteers with that of professional therapists and examined the connection between years of experience, ethical behavior, and PQL. One hundred eighty-three volunteers and professional caregivers filled out a sociodemographic questionnaire, an Ethical Behavior Questionnaire and the Professional Quality of Life (ProQOL) questionnaire. The results indicated that professional caregivers report lower levels of STS and burnout, and higher levels of CS and ethical behavior compared with volunteer caregivers. Moreover, the findings suggest that ethical behavior correlates with STS, burnout, and CS. Ethical behavior has a protective value for mental health caregivers. The discussion emphasizes the value of a professional code of ethics and ethical training for professional and volunteering caregivers. PMID:26121172
Little, Emily E; Carver, Leslie J; Legare, Cristine H
Two studies examined the extent to which the type of triadic interaction pervasive in Western populations (i.e., shared visual attention and ostensive pedagogical cues) was representative of infant-caregiver object exploration in a non-Western indigenous community. Caregivers in the United States and Vanuatu interacted with infants and a novel object for 3 min. In Study 1 (N = 116, Mage = 29.05), Ni-Van caregivers used more physical triadic engagement and U.S. caregivers used more visual triadic engagement. In Study 2 (N = 80, Mage = 29.91), U.S. caregivers were more likely than Ni-Van caregivers to transmit an action and to use visual cues while interacting with their child. These studies demonstrate that the Western model of early social learning is not universal. PMID:27018870
Bull, Margaret J; Avery, Jennifer Sjostedt; Boaz, Lesley; Oswald, Debra
A valid, reliable measure of family caregivers' knowledge about delirium was not located in the literature; such an instrument is essential to assess learning needs and outcomes of education provided. The purpose of the current study was to (a) develop a family Caregiver Delirium Knowledge Questionnaire (CDKQ) based on the Symptom Interpretation Model; and (b) establish validity and reliability of the measure. The 19-item CDKQ was developed and administered to 164 family caregivers for community-dwelling older adults. Descriptive statistics were examined for all variables. Psychometric testing included confirmatory factor analysis, item-to-total correlations, and internal consistency reliability. A three-factor model provided the best fit for the data. The findings support initial validity and reliability of the CDKQ with family caregivers. Although the CDKQ was developed for use with family caregivers, it has potential for use with other caregivers, such as home health aides. PMID:25893726
Full Text Available The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI. The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.
Johnson, Rebecca; Hofacker, Jon; Boyken, Lara; Eisenstein, Amy
The concept of age-friendliness has been globally coined by the World Health Organization (WHO) to give value to the physical, social, and environmental factors that can promote or hinder older residents' ability to age in place in cities. The initiative has been very successful in raising awareness among public health policy makers about the generic needs of older adults and urban features that promote active aging. However, the movement has been less focused on highlighting divergent needs of different older adult populations and their informal caregivers. The objective of this mixed method study is to analyze the ratings of 397 caregivers of urban age-friendly features relative to the ratings of 1737 noncaregivers collected as part of a baseline assessment of the age-friendliness of the city of Chicago. Using the approved WHO Vancouver Protocol, the research team also conducted six mixed caregiver/noncaregiver focus groups (n = 84) and three caregiver-only focus groups (n = 21). Survey findings show that informal caregivers rate all eight age-friendly domains with less satisfaction than do noncaregivers. Discussion in focus groups highlighted some of the reasons for these less favorable ratings and foregrounded the domains and themes that mattered most to caregivers. In conclusion, while our study revealed few systematic differences between caregiver and noncaregiver survey satisfaction ratings, caregivers report significantly poorer health than do noncaregivers. In addition, caregiver-only focus groups foregrounded "missing" priority issues specific to caregivers such as respite and the quality of training and flexibility of home help care. Results suggest that one productive next step for researchers would be to widen the usual range of factors considered essential for maintaining the well-being of informal caregivers of community-dwelling older adults. The age-friendly domains provide a starting point for this. Another would be to develop integrated
Belasco, Angelica G; Sesso, Ricardo
The aim of this study is to describe the characteristics of caregivers of chronic hemodialysis patients, assess their perceived burden and health-related quality of life, and investigate factors influencing this burden. We studied 100 hemodialysis patients and their respective primary caregivers for more than 4 months, measuring quality of life by the Medical Outcomes Survey 36-Item Short-Form Health Survey (SF-36). Subjective burden on caregivers was assessed by the Caregiver Burden scale (score range, 1 to 4; higher values indicate a greater effect). The majority of caregivers were women (84%), married (66%), with a mean age of 46 +/- 2 (SE) years, and of low socioeconomic level. Their main types of relationship with patients were wives (38%) and sons or daughters (27%). Caregiver Mental Health and Vitality were the most affected emotional dimensions on the SF-36 (mean scores, 64.4 +/- 1.8 and 66.6 +/- 1.7, respectively). Mean score of total burden experienced was 2.07 +/- 0.05. Multiple regression analysis showed that independent and significant predictors of burden were Mental Health of the caregiver (R2 = 24%), Vitality of the patient (R2 = 10%), type of relationship of the caregiver (female spouse) (R2 = 5%), and Pain of the caregiver (R2 = 3%). Caregivers of hemodialysis patients may experience a significant burden and an adverse effect on their quality of life. Emotional aspects of caregivers (particularly female spouses) and patients are important predictors of burden. Social support and psychological interventions should be considered to improve caregiver life and patient outcomes. PMID:11920347
Bertel-De la Hoz, Anyel María
Introduction: old age increase the likelihood that health problems arise, whichnecessarily involve greater dependency. The family usually assumes the role of caringfor the elderly, becoming informal caregivers.Objective: to determine the risk of overload and illness among informal caregivers ofdependent elderly.Methodology: this is a descriptive study, which included informal caregivers of elderlypatients attending a program of promotion and prevention of cardiovascular disease in Cartagena, ...
Yuen, E Y N; Dodson, S; Batterham, R W; Knight, T; Chirgwin, J; Livingston, P M
Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers' capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy. Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model. Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems. The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy. PMID:25630765
Full Text Available The burden of chronic obstructive pulmonary disease (COPD on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status.
Suwal, Juhee Varacharya
AbstractThis study revisited the “double jeopardy” hypothesis in terms of the health ofimmigrant family caregivers. It also investigated the effect of “reciprocity”(feeling of giving back something) on the health of family caregivers. TheGeneral Social Survey 2002 Cycle 16 data were analyzed using χ2-test andLogistic regressions. About 16% of immigrants and 13.6% of non-immigrantssaid that their health was negatively affected as a result of caregiving.Immigrant family caregivers were three ti...
Ranieri, Veronica; Madigan, Kevin; Roche, Eric; Bainbridge, Emma; McGuinness, David; Tierney, Kevin; Feeney, Larkin; Hallahan, Brian; McDonald, Colm; O'Donoghue, Brian
While knowledge on service users' perspective on their admissions to psychiatric wards has improved substantially in the last decade, there is a paucity of knowledge of the perspectives of caregivers. This study aimed to determine caregiver's perception of the levels of perceived coercion, perceived pressures and procedural justice experienced by service users during their admission to acute psychiatric in-patient units. The perspective of caregivers were then compared to the perspectives of their related service users, who had been admitted to five psychiatric units in Ireland. Caregivers were interviewed using an adapted version of the MacArthur admission experience interview. Sixty-six caregivers participated in this study and the majority were parents. Seventy one percent of service users were admitted involuntarily and nearly half had a diagnosis of schizophrenia or schizoaffective disorder. Caregivers of involuntarily admitted individuals perceived the service users' admission as less coercive than reported by the service users. Caregivers also perceived a higher level of procedural justice in comparison to the level reported by service users. Reducing the disparity of perceptions between caregivers and service users could result in caregivers having a greater understanding of the admission process and why some service users may be reluctant to be admitted. PMID:26163727
Nakken, Nienke; Janssen, Daisy J A; van den Bogaart, Esther H A; Wouters, Emiel F M; Franssen, Frits M E; Vercoulen, Jan H; Spruit, Martijn A
The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status. PMID:26324811
Smith, G. Rush; Williamson, Gail M.; Miller, L. Stephen; Schulz, Richard
This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver depression. In turn, increased caregiver depression and decreased caregiver respectful behavior predicted increases in potentially harmful behavior. These results extend previous cross-sectional findings and indicate that changes in caregiving stressors, caregiver depression, and caregiver respect over time may signal that intervention is warranted in order to forestall or prevent poor quality of care. PMID:21417536
... will affect your physical and mental health, too. Depression Depression is common in caregivers. But caregiving does ... you’ve failed in some way. It seems obvious that as a caregiver, you do the best ...
Expert-reviewed information summary about the challenges faced by family caregivers of cancer patients. This summary focuses on typical caregiver roles and concerns, and helpful interventions for caregivers.
Drugli, May Britt; Mari Undheim, Anne
We studied the quality of caregiver-child relationships from the perspectives of parents and caregivers of young children in full-time day care. The sample consisted of 41 parents of children aged two years or younger (22 boys and 19 girls) in day care, and 35 of their caregivers. Parents and caregivers were interviewed. Parents and caregivers…
Zhang, Shuying; Guo, Qihao; Edwards, Helen; Yates, Patsy; Li, Chunbo
ABSTRACT Background: This study aims to explore moderation and mediation roles of caregiver self-efficacy between subjective caregiver burden and (a) behavioral and psychological symptoms (BPSD) of dementia; and (b) social support. Methods: A cross-sectional study with 137 spouse caregivers of dementia patients was conducted in Shanghai. We collected demographic information for the caregiver-patient dyads, as well as information associated with dementia-related impairments, caregiver social support, caregiver self-efficacy, and SF-36. Results: Multiple regression analysis showed that caregiver self-efficacy was a moderator both between BPSD and subjective caregiver burden, and social support and subjective caregiver burden. Results also showed a partial mediation effect of caregiver self-efficacy on the impact of BPSD on subjective caregiver burden, and a mediation effect of social support on subjective caregiver burden. Caregiver self-efficacy and subjective burden significantly influenced BPSD and social support. Conclusion: Caregiver self-efficacy played an important role in the paths by which the two factors influenced subjective burden. Enhancing caregiver self-efficacy for symptom management (particularly BPSD) can be an essential strategy for determining interventions to support dementia caregivers in China, and possibly in other countries. PMID:24932533
Rodrigo Chaturaka; Fernando Tharanga; Rajapakse Senaka; de Silva Varuni; Hanwella Raveen
Abstract Introduction Data on caregiver strain and depression of principal caregivers of patients with mental illnesses are few in developing countries. Findings from developed countries cannot be applied directly to developing countries as culture specific factors may influence the outcome. Methods A prospective study was carried out in the University Psychiatry Unit of the National Hospital of Sri Lanka (NHSL) to identify symptoms of depression, caregiver strain and dissatisfaction with lif...
Takigawa,Tomoko; Li, Hui-Ying; Nakajima, Kazuo; Tsutsui, Takako; Yajima, Yuki; Wang, Da-Hong; Ogino, Keiki
The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as...
Fernanda Rochelly do Nascimento Mota; Janaína Fonseca Victor; Maria Josefina da Silva; Maria Eliana Peixoto Bessa; Valdicleibe Lira de Amorim; Maria Lígia Silva Nunes Cavalcante; Andréa Carvalho Araújo Moreira; Talita Matias Barbosa
This study aimed to carry out the cross-cultural adaptation of the Caregiver Reaction Assessment CRA for use in Brazil with informal caregivers of dependent elderly METHOD A methodological study, of five steps: initial translation, synthesis of translations, retro-translation, evaluation by a judge committee and a pre-test, with 30 informal caregivers of older persons in Fortaleza, Brazil. Content validity was assessed by five experts in gerontology and geriatrics. The cross-cultural adaptati...
Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A
Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices. PMID:26607814
Fitten Jaime; Vassar Stefanie D; Maines Michele L; Hays Ron D; Vickrey Barbara G; Strickland Tony
Abstract Background Providing care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL) of informal caregivers. To date, there is no existing caregiver quality of life measure for dementia caregivers with breadth of coverage or that is applicable to caregivers of diverse ethnic backgrounds. The purpose of this study was to develop and evaluate a caregiver-targeted quality-of-life measure (CGQOL) for informal caregivers of p...
Rishma Gohil; Roxanne Crosby-Nwaobi; Angus Forbes; Ben Burton; Phil Hykin; Sobha Sivaprasad
Purpose To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD). Methods This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA). Objective caregiver burden was determined by the caregiver tasks and level of ...
Choi, JiYeon; Tate, Judith A.; Hoffman, Leslie A.; Schulz, Richard; Ren, Dianxu; Donahoe, Michael P.; Given, Barbara A.; Sherwood, Paula R.
Context Family caregivers are a vital resource in the recovery of intensive care unit (ICU) survivors. Of concern, the stress associated with this role can negatively affect caregiver health. Fatigue, an important health indicator, has been identified as a predictor of various illnesses, greater use of health services, and early mortality. Examining the impact of fatigue on caregivers’ physical health can assist in identifying critical time points and potential targets for intervention. Objectives To describe self-reported fatigue in caregivers of ICU survivors from patients’ ICU admission to ≤ two weeks, two- and four-months post-ICU discharge. Methods Patient-caregiver pairs were enrolled from a medical ICU. Caregiver fatigue was measured using the Short-Form-36 Health Survey Vitality subscale (SF-36 Vitality). Caregiver psychobehavioral stress responses included depressive symptoms, burden, health risk behaviors, and sleep quality. Patient data included self-reported physical symptoms and disposition (home vs. institution). Results Forty seven patient-caregiver pairs were initially enrolled. Clinically significant fatigue (SF-36 Vitality ≤ 45) was reported by 43% to 53% of caregivers across the time points and these caregivers reported worse scores in measures of depressive symptoms, burden, health risk behaviors and sleep quality, and patients’ symptom burden. In 26 caregivers with data for all time points (55% of the total sample), SF-36 Vitality scores showed trends of improvement when the patient returned home and greater impairment when institutionalization continued. Conclusion In caregivers of ICU survivors, fatigue is common and potentially linked with poor psychobehavioral responses. Worsening fatigue was associated with greater symptom distress and long-term patient institutionalization. PMID:24439845
McGuire-Schwartz, Mandy; Small, Latoya A.; Parker, Gary; Kim, Patricia; McKay, Mary
Homelessness affects a large and increasing number of families in the United States, and exposure to violence and other potentially traumatic events is common among homeless families. It is important to understand more about this population and, more specifically, about the relationship between youth mental health and caregiver mental health and…
Holley, Caitlin K.; Mast, Benjamin T.
Purpose: Interest in anticipatory grief (AG) has typically focused on terminal diseases such as cancer. However, the issues involved in AG are unique in the context of dementia due to the progressive deterioration of both cognitive and physical abilities. The current study investigated the nature of AG in a sample of dementia caregivers and…
Hughes, Sheryl O; Cross, Matthew B; Hennessy, Erin; Tovar, Alison; Economos, Christina D; Power, Thomas G
Researchers use the Caregiver's Feeding Styles Questionnaire (CFSQ) to categorize parent feeding into authoritative, authoritarian, indulgent, and uninvolved styles. The CFSQ assesses self-reported feeding and classifies parents using median splits which are used in a substantial body of parenting literature and allow for direct comparison across studies on dimensions of demandingness and responsiveness. No national norms currently exist for the CFSQ. This paper establishes and recommends cutoff points most relevant for low-income, minority US samples that researchers and clinicians can use to assign parents to feeding styles. Median scores for five studies are examined and the average across these studies reported. PMID:22119478
... caretaker's life. While more men are assuming caregiving roles, we found significant gender differences in how the caretaking experience is perceived," Washington added in a university news release. The researchers questioned more than 280 family caregivers and found that women had much lower ...
Jeglic, Elizabeth L.; Pepper, Carolyn M.; Ryabchenko, Karen A.; Griffith, James W.; Miller, Allison B.; Johnson, Matthew D.
To test a caregiving model of depression in spouses, 31 married couples completed interview and questionnaire assessments of depressive symptoms and caregiving activities. Spouses living with a partner with depressive symptoms had more symptoms of depression themselves. However, this association was found to be fully mediated by spouses' perceived…
Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre
Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…
Schulz, Richard; Sherwood, Paula R.
The associations between physical and psychological health and being an informal caregiver are well established. In this article, "caregiving" denotes care that is provided by a family member or friend rather than by a professional who is reimbursed for services. Clinical observation and early empirical research showed that assuming a caregiving…
van Toledo, Annik; Seymour, Fred
Caregiver support is vital in improving outcomes for child sexual abuse victims; however, the disclosure can significantly affect caregivers, thus impacting their ability to meet their children's needs. To maximize the support from caregivers, their own needs following disclosure need to be met. This study investigated the impact of child sexual abuse disclosure and associated needs as identified by caregivers. Sixty needs assessment forms were collected from families who accessed a parenting support pilot program run in New Zealand. These forms were completed by nonoffending caregivers during an assessment session with their counselor and consisted of both open-ended and Likert scale questions focusing on both the needs of the child and the family. Caregivers identified a range of impacts of the disclosure on their children, themselves, and other families members and the related support that may be needed. In particular, caregivers identified that they needed support with child behavior management and with their own coping. The findings suggest that interventions with caregivers following disclosure of child sexual abuse may be a valuable adjunct to therapy provided directly to the child. PMID:27266536
Levin, Douglas; Arafeh, Sousan; Deniz, Carla Baker; Gottesman, Julie
This report is intended to provide information to parents and other primary caregivers to help them consider what effects their family media use strategies and practices can have on their young children, and to provide ideas and strategies to help parents and caregivers select and use media resources with their families in developmentally…
Intended for use in conjunction with videos illustrating key concepts and caregiving techniques, this guide focuses on how the daily routines of caring for infants and toddlers can become opportunities for promoting the child's learning and development and for deepening the relationship between child and caregiver. Special attention is given to…
Lindhiem, Oliver; Dozier, Mary
Objective: This study aimed to examine the association between child behavior problems and caregiver commitment to their child in a group of young foster children. Method: The sample consisted of 102 caregiver-child dyads from the greater Baltimore area. Child behavior was assessed using the Child Behavior Checklist [CBCL; Achenbach, T. M. (1991).…
Ramier, R. Malia; Barth, Richard P.
Considers how human immunodeficiency virus (HIV) and substance use are changing child welfare practice. Briefly presents case examples and statistics to illustrate scope of problem and need for caregiver training. Describes Caregiver Training Project, effort to develop training materials to enhance ability of parent educators and other family…
Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia
Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…
G. J. Eckert
Full Text Available Objectives. Dental caries is the most common chronic childhood disease, with numerous identified risk factors. Risk factor differences could indicate the need to target caregiver/patient education/preventive care intervention strategies based on population and/or individual characteristics. The purpose of this study was to evaluate caries risk factors differences by race/ethnicity, income, and education. Methods. We enrolled 396 caregiver-toddler pairs and administered a 105-item questionnaire addressing demographics, access to care, oral bacteria transmission, caregiver's/toddler's dental and medical health practices, caregiver's dental beliefs, and caregiver's/toddler's snacking/drinking habits. Logistic regressions and ANOVAs were used to evaluate the associations of questionnaire responses with caregiver's race/ethnicity, income, and education. Results. Caregivers self-identified as Non-Hispanic African-American (44%, Non-Hispanic White (36%, Hispanic (19%, and other” (1%. Differences related to race/ethnicity, income, and education were found in all risk factor categories. Conclusions. Planning of caregiver/patient education/preventive care intervention strategies should be undertaken with these caries risk factor differences kept in mind.
Elnasseh, Aaliah G.; Trujillo, Michael A.; Peralta, Silvina Victoria; Stolfi, Miriam E.; Morelli, Eliana; Perrin, Paul B.
This study examined whether healthier family dynamics were associated with higher personal strengths of resilience, sense of coherence, and optimism among dementia caregivers in Argentina. Caregivers are usually required to assist individuals with dementia, and family members have typically fulfilled that role. Personal strengths such as resilience, sense of coherence, and optimism have been shown to protect caregivers from some of the negative experiences of providing care, though the family-related variables associated with these personal strengths are largely unknown. Hierarchical multiple regressions investigated the extent to which family dynamics variables are associated with each of the caregiver personal strengths after controlling for demographic and caregiver characteristics. A sample of 105 caregivers from Argentina completed a set of questionnaires during a neurologist visit. Family dynamics explained 32% of the variance in resilience and 39% of the variance in sense of coherence. Greater family empathy and decreased family problems were uniquely associated with higher resilience. Greater communication and decreased family problems were uniquely associated with higher sense of coherence. Optimism was not found to be significantly associated with family dynamics. These results suggest that caregiver intervention research focused on the family may help improve caregiver personal strengths in Argentina and other Latin American countries. PMID:27413574
Rumbaugh, Andrew E.
This study investigated what were the most highly-valued reasons among Muslim caregivers for sending their children to Lebanese evangelical Christian schools. Muslim caregivers (N = 1,403) from four Lebanese evangelical Christian schools responded to determine what were the most highly-valued reasons for sending their children to an evangelical…
Lackey, Steven L.
The purpose of this study was to examine the role and relationship of the practice of Christian beliefs and resilience in the context of dementia patient caregivers' lives. The guiding question was "What is the relational nature of the practice of Christian beliefs and resilience in the lived experiences of caregivers of dementia…
Monin, Joan K.; Schulz, Richard
Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, we first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers’ emotional experiences. Drawing from past theory and research, we propose that caregivers experience similar, complementary, and/or defensive emotions in response to care recipient suffering through mechanisms such as cognitive empathy, mimicry, and conditioned learning, placing caregivers at risk for psychological and physical morbidity. We then describe how gender, relationship closeness, caregiving efficacy, and individual differences in emotion regulation moderate these processes. Finally, we provide directions for future research to deepen our understanding of interpersonal phenomena among older adults, and we discuss implications for clinical interventions to alleviate the suffering of both caregivers and care recipients. PMID:19739924
Brown, Stephanie L.; Smith, Dylan M.; Schulz, Richard; Kabeto, Mohammed U.; Ubel, Peter A.; Poulin, Michael; Yi, Jaehee; Kim, Catherine; Langa, Kenneth M.
Traditional investigations of caregiving link it to increased caregiver morbidity and mortality, but do not disentangle the effects of providing care from those of being continuously exposed to an ailing loved one with serious health problems. We explored this possible confound in a national, longitudinal survey of elderly married individuals (N = 3,376). Results showed that spending at least 14 hr per week providing care to a spouse predicted decreased mortality for the caregiver, independently of behavioral and cognitive limitations of the care recipient (spouse), and of other demographic and health variables. These findings suggest that it may be premature to conclude that health risks for caregivers are due to providing active help. Indeed, under some circumstances, caregivers may actually benefit from providing care. PMID:19320860
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family. CONCLUSIONS......AIM: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family. METHODOLOGY: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The......: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to...
Peter Babatunde Olaitan
Full Text Available Objective: The aim of this paper is to document the practice of photography among clinicians whose daily work depends and is influenced so much by medical photography. Materials and Methods: Questionnaires documenting the bio data, place of practice, and experience of cleft caregivers with clinical photography were distributed. Knowledge of rules guiding clinical photography and adherence to them were also asked. Types of camera used were documented and knowledge of the value of clinical photographs were also inquired. Results: Plastic surgeons constitute the highest proportion of 27 (38.6%, followed by Oral and Maxillofacial surgeons with 14 (20.0%. Twenty one (30.0% of the respondents always, 21 (30.0% often, 12 (17.1% frequently, while 9 respondents sometimes took photographs of their patients. Suggested uses of clinical photographs included training, 52 (74.3%, education, 51 (72.9%, medicolegal, 44 (62.9% and advertisement, 44 (62.9% among others. Twenty two (31.4% did not know that there were standard guidelines for taking clinical photographs. Twenty three (32.9% of them did not seek the consent of the patients before taking clinical photographs. Conclusion: While the practice of clinical photography is high among African cleft caregivers, there is a need for further education on the issues of standard rules and obtaining consent from patients.
Parvataneni, Rupa; Polley, Mei-Yin; Freeman, Teresa; Lamborn, Kathleen; Prados, Michael; Butowski, Nicholas; Liu, Raymond; Clarke, Jennifer; Page, Margaretta; Rabbitt, Jane; Fedoroff, Anne; Clow, Emelia; Hsieh, Emily; Kivett, Valerie; Deboer, Rebecca; Chang, Susan
The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were "very important" but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value < 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers' highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process. PMID:21311950
Howes, Carollee; Shivers, Eva Marie
The goal of the research reported in this article was to examine the process of forming attachment to caregivers in children new to childcare. We examined child and adult behaviors and the adult's perception of the child at entry, and the ethnic/racial match between the child and caregiver as predictors of attachment relationship quality measured…
Lindsey, Michael A.; Gilreath, Tamika D.; Thompson, Richard; Graham, J. Christopher; Hawley, Kristin M.; Weisbart, Cindy; Browne, Dorothy; Kotch, Jonathan B.
Using structural equation modeling, this study examined the relationship of caregiver network support on caregiver and child mental health need, as well as child mental health service use among 1075 8-year-old children participating in the LONGSCAN study. The final model showed acceptable fit (χ2 = 301.476, df = 136, p
Helmerhorst, K.O.W.; Riksen-Walraven, J.M.A.; Vermeer, H.J.; Fukkink, R.G.; Tavecchio, L.W.C.
Research Findings: High-quality caregiver–child interactions constitute the core of high-quality child care for young children. This article describes the background and development of the Caregiver Interaction Profile (CIP) scales to rate 6 key skills of caregivers for interacting with 0- to 4-year
Rusby, Julie C.; Jones, Laura Backen; Crowley, Ryann; Smolkowski, Keith
Home-based child caregivers face unique stressors related to the nature of their work. One hundred and fifty-five home-based child care providers in Oregon, USA, participated in this cross-sectional correlational study. We investigated associations between indicators of caregiver stress and child care working conditions, the quality of caregiver…
Full Text Available The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as indicators of psychological resources, and instrumental and emotional support network and formal home care service utilization as indicators of social resources. The mental health outcome measure was the General Health Questionnaire 12-item version (GHQ-12. Complete data on 235 non-depressed female caregivers were separated into 3 groups according to the relationship type (wife, daughter and daughter-in-law and analyzed separately. Multivariate logistic regression models controlling for duration of caregiving, care-recipient's gender, ADL dependency and behavioral problems demonstrated that significant predictors of depression were caregiving satisfaction and intention to care in wives, caregiving satisfaction in daughters, and physical health and emotional support network in daughters-in-law. Noteworthy, intention to care increased the risk of depression in wives, while decreasing the risk of depression in daughters-in-law. The findings indicate that the effects of caregivers' resources on mental health may differ by relationship type.
Martire, L M; Stephens, M A; Atienza, A A
This study applied theory from the general work and family literature to the dual roles of work and caregiving, in order to examine whether level of satisfaction and time involvement in each of these roles moderate the effects of stress in the other role on well-being. Respondents were 118 employed women who were providing care to an impaired parent or parent-in-law. As predicted, greater time involvement in work was found to buffer women from the negative effects of caregiving stress. Satisfaction with caregiving and satisfaction with work were directly associated with better well-being, beyond the effects of stress in both roles. However, women who experienced high levels of caregiving stress and who were highly satisfied with work were especially vulnerable to depression. These findings illustrate the importance of examining the effects of caregiving stress on well-being in the context of work-related experiences. PMID:9310100
Pinto, Juliana Maria de Sousa; Nations, Marilyn Kay
The provision of care causes stress in everyday family dynamics leading to physical, mental and emotional complications in caregivers and spouses' loss of liberty and/or overwork. Between March and November 2006, this anthropological research examined family caregiving in the context of Chronic Obstructive Pulmonary Disease (COPD). By means of ethnographic interviews, illness narratives and participant observation, the scope was to describe family reorganization and coexistence with the disease and its evolution, caregiver perceptions about patient difficulties and limitations experienced and strategies employed to tackle their illness. Six low-income family caregivers, living in poor, urban areas in the outskirts of the capital city, Fortaleza, Ceará, Brazil, participated in the study. From the Content Analysis, two categories arose: "sharing suffering" and "attitudes and behavior perceived and experienced by caregivers." In-depth narratives revealed marked affection between patients and their family caregivers. Despite poverty, structural violence, unemployment, social prejudice and low salaries endemic in the Northeast of Brazil, the caregivers find effective ways to cope with chronic illness besides creating strategies to diminish suffering caused by the illness. PMID:22267046
Full Text Available Coping is understood as the process of managing external or internal demands that are considered as taxing or exceeding the resources of the person. There is no formal classification of coping strategies, and these are understood as adaptive versus maladaptive and problem focuses versus emotion-focused. Understanding the commonly used coping strategies in a particular group of subjects can provide valuable insights for designing interventions to reduce the stress. In this review, we look at the literature which is available with regards to the coping strategies used by the caregivers of patients with schizophrenia. Findings suggest that caregivers of patients with schizophrenia use mixed type of coping mechanisms to deal with the stress of caregiving. The coping strategies are shown to have association with variables such as caregiver burden, caregiving experience, expressed emotions, social support, psychological morbidity in the caregivers, quality of life of caregivers and psychopathology in patients. One of the major limitations of the literature is that there is a lot of variability in the assessment instruments used across different studies to assess coping.
Koenig, Kelly N.; Steiner, Victoria; Pierce, Linda L.
This study compared information needs of caregivers of persons with dementia with caregivers of those who received rehabilitation treatment. Caregivers were provided a 48-item survey and asked to choose their top ten information needs. Dementia caregivers' (n = 33) top needs were dealing with forgetfulness/confusion (91%) and repeating…
Lund, Line; Ross, Lone; Grønvold, Mogens
To develop a questionnaire for cancer patients' informal caregivers, measuring the caregiving tasks and consequences, and the caregivers' needs with a main focus on the interaction with the health care professionals. Such an instrument is needed to evaluate the efforts directed towards caregivers...
Grosse, Scott D.; Flores, Alina L.; Ouyang, Lijing; Robbins, James M.; Tilford, John M.
The well-being of caregivers of children with spina bifida and other conditions is an important topic. We interviewed the primary caregivers of 98 children aged 0-17 years with spina bifida sampled from a population-based birth defects registry in Arkansas and the caregivers of 49 unaffected children. Measures of caregiver well-being were compared…
Villagrana, Margarita; Palinkas, Lawrence A.
The purpose of this study was to examine the three most common types of caregivers in the child welfare system (birth parents, relative caregivers, and foster parents), an active child welfare case, caregivers' endorsement of barriers to mental health services and mental health service use by caregivers for the children under their care. The…
Brehaut Jamie; King Gillian; Rosenbaum Peter; Schwellnus Heidi; O'Donnell Maureen; Raina Parminder; Russell Dianne; Swinton Marilyn; King Susanne; Wong Micheline; Walter Stephen D; Wood Ellen
Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evide...
Martire, Lynn M.; Schulz, Richard; Reynolds, Charles F.; Karp, Jordan F.; Gildengers, Ariel G.; Whyte, Ellen M.
Objectives To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression. Design Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone. Setting Primary care and university late-life mental health research clinic. Participants Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N = 244 dyads). Measurements Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression. Results Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β = −0.22, P =.001) and a trend toward lower general burden (β = − 0.08, P =.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76) = 4.27, P =.04). Conclusion Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects. PMID:19943833
Dementia family caregiving has been the focus of research for decades. Much has been learned about the negative impact of caregiving as well as characteristics that may be protective. This paper explores themes in caregiving pertinent to clinicians and researchers working with dementia family caregivers: the psychological, subjective, and physical outcomes of caregiving, ways in which dementia alters relationships between the patient and caregiver, and strategies for improving outcomes for caregivers. Suggestions for next steps in research and clinical care are made. PMID:27541750
Delalibera, Mayra; Presa, Joana; Barbosa, António; Leal, Isabel
Caring for a family member with an advanced and/or terminal illness can be a great emotional, physical and financial burden that has an impact on the quality of life of the caregivers. The scope of this study was to conduct a systematic review of the literature on the burden of caregiving, related factors and the consequences for family caregivers of advanced stage cancer patients or patients in end-of-life or palliative care. A search for scientific papers published in the EBSCO, Web of Knowledge and BIREME databases was conducted since records on this topic began in the databases through March 2014. Of the 582 articles found, only 27 were selected. The majority of the articles found that family caregivers were overburdened. Some studies found that the care-giving burden was associated with characteristics of the patients and their illnesses while, in other studies, it was associated with poor health of the caregiver, greater psychopathological symptoms (anxiety, depression, emotional distress) and with the development of complications in the grieving process. However, hope, social support, the ability of the caregiver to attribute meaning to the experience of caring and feeling comfortable with the tasks of caring were associated with lower levels of burden. PMID:26331505
Connelly, Rachel; Kimmel, Jean
This paper examines the effect of the timing of mothers' daily work schedules on the amount of maternal caregiving she engages in on that same day. We look at total caregiving time on weekdays, early morning and evening caregiving time on weekdays, and total caregiving time on weekends. Since the timing of employment is, in part, a choice made by mothers, which is sometimes explicitly related to caregiving concerns, we argue that the decision to work nonstandard hours must be modeled jointly ...
Selma Bozkurt Zincir; Murat Sunbul; Serkan Zincir; Esra Aydin Sunbul; Mustafa Oguz; Fatma Feriha Cengiz; Erdal Durmus; Tarik Kivrak; Ibrahim Sari
Background. The primary purpose of this study was to investigate adult-child caregiver burden in heart failure (HF) patients. Secondary purpose of the study was to identify the possible influencing factors for caregiver burden and depressive symptoms in a young adult-child caregiver group. Methods. A total of 138 adult-child caregivers and 138 patients with HF participated in this study. Caregivers’ burden, depressive symptoms, and anxiety levels were assessed by using Zarit Caregiver Burden ...
... About Long-Distance Caregiving Heath and Aging So Far Away: Twenty Questions and Answers About Long-Distance ... for the family, what could Dave do from far away to help her—and his sister? The ...
Nielsen, Mette Kjærgaard
Objective Family caregivers of terminally ill patients are in a vulnerable position, and previous studies show that bereaved caregivers are at risk of psychological distress. Pre-loss grief symptoms seem to predict post-loss psychological distress, while preparedness for a looming loss tends to...... decrease distress. The aim of this nation-wide study was to investigate the association of both anticipatory grief symptoms and preparedness with psychological distress in bereaved family caregivers. Methods A list of all adult patients in Denmark receiving drug reimbursement for terminal illness was...... months after the loss. The baseline questionnaire included a pre-loss version of the Prolonged Grief-13 and one question regarding caregiver preparedness, while the follow-up questionnaire contained the Prolonged Grief-13 and Beck’s Depression Inventory II. Results Of the contacted 9,512 patients 3...
Dillehay, R C; Sandys, M R
The research literature on adjustment by family members to providing care to victims of Alzheimer's disease is new and expanding rapidly. The purpose of this review is to summarize the categories and methods of that research; to evaluate critically the state of knowledge these studies are producing; and to suggest ways of strengthening future investigations. The review is organized around psychological, social, and health factors as antecedents or correlates of similar categories of outcomes for caregivers. While there are some emerging relationships involving caregiver burden, depression, and psychological well-being, it is difficult to generalize about the determinants or correlates of the consequences of meeting caregiver responsibilities; this difficulty probably results from a failure to deal adequately with key concepts and circumstances of the caregiver. These conceptual and methodological shortcomings are discussed and suggestions for refinement made. PMID:2204604
Ford, Bryan Keith; Ingersoll-Dayton, Berit; Burgio, Kathryn
This study's main objective was to examine care transition experiences of older veterans and their caregivers. Fifty patients age 65 years and older, discharged from a Veterans Affairs Medical Center hospital, completed the Care Transitions Measure-15 survey three to four weeks postdischarge. Seven patients and six caregivers participated in semistructured interviews. Overall, the quality of care transitions was rated as good; however, some items were indicated as problematic for veterans. Themes that emerged included agreeableness, frustration with complex information, caregiver education, and the timing and methods of information delivery. These findings have implications for all clinical staff working with veterans, and particularly for social workers facilitating care transitions for veterans and their caregivers. PMID:27263203
An article about an educational program at the City of Hope Cancer Center intended to provide health professionals with the tools and information needed to help family caregivers care for themselves and their loved ones with cancer.
... https://medlineplus.gov/news/fullstory_159925.html Latest Zika Puzzle: How U.S. Patient Infected Caregiver Officials say ... MONDAY, July 18, 2016 (HealthDay News) -- The mysterious Zika virus continues to surprise health scientists. On Monday, ...
Full Text Available This contribution analyses the importance given to gender in articles related to caregiving for older adults in five francophone newspapers (Le Soir, Le Devoir, Figaro, Libération and La Presse across three countries (Belgium, France and Canada. Out of the 254 articles in our sample, less than a fifth (49 made any mention of gender. A closer analysis of the gender related contributions reveal that only 18 articles devote more than a line to the interaction between gender and caregiving activities and its multiple socio-economic consequences. This is highly surprising since women provide the bulk of caregiving efforts and are the ones facing difficulties due to the lack of governmental actions to assist with these functions. These consequences are well documented in the scientific literature and feature caregiving burnout, loss of employment and economic insecurity. This contribution features an analysis and some extracts from the 18 articles in question.
Background: There is a dearth of studies assessing the burden of caregivers of patients with schizophrenia and illness-related variables such as age, sex, duration of illness, domicile, martial status, education, employment and previous hospitalization. Aim: The study was conducted to measure the perception of burden by caregivers of patients with schizophrenia and its correlation with nine factors on the Burden Assessment Schedule (BAS) related to spouse, physical and mental health, external...
Danielle Mendonça Araújo; Mariane Fernandes Ribeiro; Fernanda Godoi de Paula; Ana Paula Espindula
This study aimed to provide an interaction time among pediatric caregivers performing group stretching activities, and to verify the effectiveness of a stretching session to improve flexibility. Caregivers of the pediatric ward of a university hospital participated in a group activity, with 17 static postures of self-stretching techniques, held each position for 30 seconds. Muscle flexibility was assessed before and after the stretching session, using the Bank of Wells, capable of measuring t...
Demiris, George; Parker Oliver, Debra; Washington, Karla; Fruehling, Lynne Thomas; Haggarty-Robbins, Donna; Doorenbos, Ardith; Wechkin, Hope; Berry, Donna
The Problem Solving Intervention (PSI) is a structured, cognitive–behavioral intervention that provides people with problem-solving coping skills to help them face major negative life events and daily challenges. PSI has been applied to numerous settings but remains largely unexplored in the hospice setting. The aim of this pilot study was to demonstrate the feasibility of PSI targeting informal caregivers of hospice patients. We enrolled hospice caregivers who were receiving outpatient servi...
C.Jayakumar; Jagadheesan, K.; A N Verma
The present study compared burden of care between the key relatives of patients with obsessive compulsive disorder (OCD) and schizophrenia. For this study, consecutive key relatives of patients with either OCD (n=30) or schizophrenia (n=41) were evaluated with 40-item burden assessment schedule (BAS). In comparison with schizophrenia group, caregivers in OCD group had significantly high mean scores for the domains, spouse-related factor and caregiver's strategy of BAS. The degree of burden, e...
Wagner, L. C.; Torres-González, F.; Geidel, A. R.; King, M B
OBJECTIVE: To examine existential questions in the daily life of people with schizophrenia and their caregivers. METHODS: Qualitative study with focus groups. 146 people with schizophrenia (55% men) and 80 caregivers (75% women) participated. They came predominantly from primary and secondary health services of Argentina, Brazil, Chile, Spain, England and Venezuela. Each group had between six and ten participants. The data was explored through a content analysis process. RESULTS: Four omnipre...
Fernandes, Ritabelle; Osarch, Sylvia; Bell, Christina L; Flynn, Bret W; Nguyen, Lam V; Abad, Maricel J; Wen, Aida B; Masaki, Kamal H
Aging has been an important population trend of the twentieth century, with most elderly people living in developing countries. Little has been published on the healthcare needs of elderly in the Pacific Islands. The Pacific Islands Geriatric Education Center, at the University of Hawaii, has a mission to promote training in geriatric education in the Pacific Islands to improve healthcare to the elderly. The aim of this project was to develop and test a family caregiver training program for Palau and was achieved in two phases: (1) assessing needs by interviewing key informants and surveying elders and (2) evaluating the caregiver training program that was designed based on findings from the assessment. The Ecological Systems Theory provided the theoretical framework for this study. The needs assessment identified training and education of family caregivers as a top priority, with the Palauan culture of family caring for seniors presently threatened by caregiver burnout. Nearly all of the long-term care in Palau is provided by families, and elders have high prevalence of geriatric syndromes. A family caregiver train-the-trainer workshop was subsequently conducted in February 2011. Forty-four trainers, including 12 from other Pacific Islands, attended the workshop. To assess changes in knowledge and confidence to teach, we compared scores on pre- and post-questionnaires using paired t tests. The train-the-trainer workshop resulted in significantly improved self-assessed competence and confidence to teach in all geriatric syndromes, including dealing with difficult behaviors, gait and transfer training, caregiver stress relief, and resources for caregivers (p < 0.0001). This successful intervention identified geriatric care needs in Palau and successfully trained family caregivers to meet these needs, and may be used as a model for similar interventions in other Pacific Islands. PMID:23636832
Silveira Maria J
Full Text Available Abstract Background Previous studies have found that cancer patients undergoing chemotherapy can effectively manage their own symptoms when given tailored advice. This approach, however, may challenge patients with poor performance status and/or emotional distress. Our goal is to test an automated intervention that engages a friend or family member to support a patient through chemotherapy. Methods/Design We describe the design and rationale of a randomized, controlled trial to assess the efficacy of 10 weeks of web-based caregiver alerts and tailored advice for helping a patient manage symptoms related to chemotherapy. The study aims to test the primary hypothesis that patients whose caregivers receive alerts and tailored advice will report less frequent and less severe symptoms at 10 and 14 weeks when compared to patients in the control arm; similarly, they will report better physical function, fewer outpatient visits and hospitalizations related to symptoms, and greater adherence to chemotherapy. 300 patients with solid tumors undergoing chemotherapy at two Veteran Administration oncology clinics reporting any symptom at a severity of ≥4 and a willing informal caregiver will be assigned to either 10 weeks of automated telephonic symptom assessment (ATSA alone, or 10 weeks of ATSA plus web-based notification of symptom severity and problem solving advice to their chosen caregiver. Patients and caregivers will be surveyed at intake, 10 weeks and 14 weeks. Both groups will receive standard oncology, hospice, and palliative care. Discussion Patients undergoing chemotherapy experience many symptoms that they may be able to manage with the support of an activated caregiver. This intervention uses readily available technology to improve patient caregiver communication about symptoms and caregiver knowledge of symptom management. If successful, it could substantially improve the quality of life of veterans and their families during the stresses of
Lin, I-Fen; Wu, Hsueh-Sheng
Past studies have extensively examined factors associated with coping strategies that caregivers use to ameliorate distress or solve problems. While these studies have found that stressors and individual resources influence choices of coping strategies, they have tended to overlook caregivers’ social resources and have rarely considered the possibility that distinct groups of caregivers may use different sets of coping strategies. We conducted latent-class analyses to identify distinct groups...
Beringuilho, Fátima; Saraiva, Horácio; Pinheira, Vítor
INTRODUCTION: The increasing elderly population associated with increased human longevity and therefore a higher prevalence of chronic disease and higher levels of disability, brings out the importance of a new professional group considered crucial to the care process in a dignified and qualified in geriatric institutions: formal caregivers. OBJECTIVES: To evaluate and compare the profile, levels of training and quality of life of professional caregivers from geriatric organization...
Eckert, G.J.; R. Jackson; Fontana, M
Objectives. Dental caries is the most common chronic childhood disease, with numerous identified risk factors. Risk factor differences could indicate the need to target caregiver/patient education/preventive care intervention strategies based on population and/or individual characteristics. The purpose of this study was to evaluate caries risk factors differences by race/ethnicity, income, and education. Methods. We enrolled 396 caregiver-toddler pairs and administered a 105-item questionnair...
Longacre, Margaret L.; Ridge, John A.; Burtness, Barbara A.; Galloway, Thomas J.; Fang, Carolyn Y.
Patients with head and neck squamous cell carcinoma (HNSCC) often require assistance from family caregivers during the treatment and post-treatment period. This review article sought to summarize current findings regarding the psychological health of HNSCC caregivers, including factors that may be associated with poorer psychological health. Online databases (PUBMED, MEDLINE and PSYCINFO) were searched for papers published in English through September 2010 reporting on the psychological healt...
Schneiderman, Janet U.; Smith, Caitlin; Palinkas, Lawrence A
The objective of this qualitative study was to examine issues that unrelated and kinship foster caregivers in Los Angeles, CA, have in seeking help and accessing and using health care for children in foster care. There were four themes identified for all caregivers: (1) “Doing Our Best” (caregivers advocated persistently and creatively for health care); (2) “Support from Others Helped” (caregivers relied on caseworkers, organizations, and their social network); (3) “Child has Complicated, Ser...
de Schipper, Elles J.; Riksen-Walraven, J. Marrianne; Geurts, Sabine A. E.
To investigate the effects of child-caregiver ratio on the quality of caregiver-child interaction in child-care centers, 217 caregivers (ages 18-56 years) from 64 child care centers were observed during two structured play episodes: one with a group of three children and one with a group of 5 children. As predicted, a child-caregiver ratio of 3:1…
Geiger, Jennifer R; Wilks, Scott E; Lovelace, Lauren L; Chen, Zibei; Spivey, Christina A
Focusing on the understudied, increasing population of male Alzheimer's disease (AD) caregivers, the purpose of this study was to identify their likelihood of utilizing 3 coping strategies (task focused, emotion focused, and avoidance focused) and to examine the effects of each coping strategy on caregiving burden. Data were collected from 138 male AD caregivers in southern United States, including geographically proportional representation of African Americans in the sample. Stepwise regression revealed effects of each coping strategy on caregiving burden, controlling for demographics. The sample reported high burden. Task focused was the highest reported coping strategy. Yet, regression models indicated no significant effect of task-focused coping on burden outcomes. Emotion-focused and avoidance-focused coping each showed significant proportional effects on burden. Implications suggest that emotion- and avoidance-focused coping among male AD caregivers may be maladaptive, that is, reinforcing burden. Male AD caregivers may benefit from more task-focused coping, such as planning and active problem solving. PMID:25267930
Miranda, Darien; Favela, Jesus; Ibarra, Catalina; Cruz, Netzahualcoyotl
Caring for people with dementia imposes significant stress on family members and caregivers. Often, these informal caregivers have no coping strategy to deal with these behaviors. Anxiety and stress episodes are often triggered by problematic behaviors exhibited by the person who suffers from dementia. Detecting these behaviors could help them in dealing with them and reduce caregiver burden. However, work on anxiety detection using physiological signals has mostly been done under controlled conditions. In this paper we describe an experiment aimed at inducing anxiety among caregivers of people with dementia under naturalistic conditions. We report an experiment, using the naturalistic enactment technique, in which 10 subjects were asked to care for an older adult who acts as if she experiences dementia. We record physiological signals from the participants (GSR, HR, EEG) during the sessions that lasted for approximately 30 min. We explain how we obtained ground truth from self-report and observation data. We conducted two different tests using the Support Vector Machine technique. We obtained an average precision of 77.8 % and 38.1 % recall when classifying two different possible states: "Anxious" and "Not anxious". Analysis of the data provides evidence that the experiment elicits state anxiety and that it can be detected using wearable sensors. Furthermore, if episodes of problematic behaviors can also be detected, the recognition of anxiety in the caregiver can be improved, leading to the enactment of appropriate interventions to help caregivers cope with anxiety episodes. PMID:27443338
Fernanda Rochelly do Nascimento Mota
Full Text Available This study aimed to carry out the cross-cultural adaptation of the Caregiver Reaction Assessment CRA for use in Brazil with informal caregivers of dependent elderly METHOD A methodological study, of five steps: initial translation, synthesis of translations, retro-translation, evaluation by a judge committee and a pre-test, with 30 informal caregivers of older persons in Fortaleza, Brazil. Content validity was assessed by five experts in gerontology and geriatrics. The cross-cultural adaptation was rigorously conducted, allowing for inferring credibility. RESULTS The Brazilian version of the CRA had a simple and fast application (ten minutes, easily understood by the target audience. It is semantically, idiomatically, experimentally and conceptually equivalent to the original version, with valid content to assess the burden of informal caregivers for the elderly (Content Validity Index = 0.883. CONCLUSION It is necessary that other psychometric properties of validity and reliability are tested before using in care practice and research.
Ripamonti, C.; Gatti, M; Alessi, C; Fumagalli, B; Sala, F.
Introduzione: Le caratteristiche della malattia di Alzheimer fanno si che la cura del paziente affetto da questo tipo di demenza risulti difficoltosa e possa incidere sull’equilibrio psico-fisico e sulla motivazione di chi opera a stretto contatto con questi malati (Aguglia et al., 2004). L’esposizione prolungata del caregiver a fattori di stress cronici è stata definita “caregiver burden” (Pillemer, Suitor, 1996), termine che esprime il carico fisico, psicologico, sociale e finanziario del c...
Akpan-Idiok, Paulina Ackley; Anarado, Agnes Nonye
Introduction Cancer care is devastating to families. This research studied the informal caregivers’ perceptions of burden of caregiving to cancer patients attending University of Calabar Teaching Hospital, Calabar. Methods The research adopted a cross-sectioned descriptive design and 210 caregivers providing care to advanced cancer patients were purposively selected. Data were collected using a researcher developed questionnaire and standardized Zarit Burden Interview scale (ZBIS). Data colle...
Löckenhoff, Corinna E; Duberstein, Paul R.; Friedman, Bruce; Costa, Paul T.
This study examined the association among caregivers’ five-factor personality traits and subjective health with particular emphasis on the role of two theoretically implicated mediators: multi-domain self-efficacy and caregiver strain. The sample comprised 536 informal caregivers (mean age = 62.9 years, SD = 19.9, 72% female, 98% White) of community-dwelling older adults with multiple functional impairments. Both physical health and mental health were negatively associated with neuroticism an...
Roth, David L; Fredman, Lisa; Haley, William E
Considerable research and public discourse on family caregiving portrays it as a stressful and burdensome experience with serious negative health consequences. A landmark study by Schulz and Beach that reported higher mortality rates for strained spouse caregivers has been widely cited as evidence for the physical health risks of caregiving and is often a centerpiece of advocacy for improved caregiver services. However, 5 subsequent population-based studies have found reduced mortality and extended longevity for caregivers as a whole compared with noncaregiving controls. Most caregivers also report benefits from caregiving, and many report little or no caregiving-related strain. Policy reports, media portrayals, and many research reports commonly present an overly dire picture of the health risks associated with caregiving and largely ignore alternative positive findings. As the pool of traditional family caregivers declines in the coming years, a more balanced and updated portrayal of the health effects of caregiving is needed to encourage more persons to take on caregiving roles, and to better target evidence-based services to the subgroup of caregivers who are highly strained or otherwise at risk. Recommendations are discussed for research that will better integrate and clarify both the negative and potential positive health effects of informal caregiving. PMID:26035608
Guerriere, Denise; Husain, Amna; Zagorski, Brandon; Marshall, Denise; Seow, Hsien; Brazil, Kevin; Kennedy, Julia; Burns, Sheri; Brooks, Heather; Coyte, Peter C
Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have
Full Text Available BACKGROUND: Because Taiwan has the fastest aging rate among developed countries, care for the elderly is becoming more prominent in the country. Primary family caregivers play an important role in patient health and health promotion behavior. Chronic obstructive pulmonary disease (COPD, an age-related disease, is a major public health problem with high morbidity and mortality and can be a long-term burden for family members; however, little attention has been given to the differences in COPD care between elder caregivers and other caregivers. This study aimed to investigate the differences between elder family caregivers and non-elder family caregivers caring for COPD patients in Taiwan, including caring behavior, caregiver response, and caring knowledge. METHODS: This cross-sectional study was conducted between March 2007 and January 2008; 406 primary family caregivers of COPD patients from the thoracic outpatient departments of 6 hospitals in north-central Taiwan were recruited to answer questionnaires measuring COPD characteristics, care behavior, caregiver response, and COPD knowledge. All questionnaires, which addressed caregiver knowledge, care behaviors, and care reactions, were shown to have acceptable validity and reliability, and the data were analyzed using univariate and generalized linear model techniques. RESULTS: The elder caregivers group had 79 participants, and the non-elder caregivers comprised 327 participants. The COPD-related knowledge scale results were positively correlated with the family caregiver caring behavior scale, suggesting that better COPD-related knowledge among family caregivers may result in improved caring behavior. After adjusting for all possible confounding factors, the elder caregivers had significantly lower COPD-related knowledge than the non-elder caregivers (P<0.001. However, there were no significant differences in the family caregiver caring behavior scale or the caregiver reaction assessment scale
Full Text Available Abstract Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.
Arnold, Anna; Lewis, Jessica; Maximovich, Alexey; Ickovics, Jeannette; Kershaw, Trace
This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother's report of herself as a caregiver and her selection of the baby's father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby's father. While mother's self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children. PMID:20680671
Sang Hee Im; Sang Chul Lee; Jae Ho Moon; Eun Sook Park; Yoon Ghil Park
Background Although some studies measured the burden of caregivers and the factors that influenced their feelings of burden, few studies have measured the quality of life (QOL) for primary caregivers of patients with muscular dystrophy (MD). We assessed the QOL for primary caregivers of patients with MD in South Korea and identified factors associated with caregivers' QOL.Methods Ninety dyads of patients with MD and their primary caregivers were enrolled in this study. The QOL of caregivers of patients with MD was assessed subjectively using the World Health Organization Quality of Life Assessment, Life Brief Form. Caregivers' emotional status was assessed using the Beck Depression Inventory (BDI) and family function level was evaluated using the Family APGAR scale. Patients reported their emotional status using the BDI or the Children's Depression Inventory. The functional levels of patients were evaluated by the modified Barthel Index.Results Caregivers' QOt. was statistically associated with family income, family function, emotional status of patients, level of education, and emotional status of caregivers (P <0.05). Caregivers who were employed had a significantly higher QOL than those who were not (P <0.05). In multiple regression analyses, emotional and employment status of caregivers was strongly associated with caregivers' QOL.Conclusion Rehabilitation teams should consider not only the physical factors of patients but also the psychological and demographic factors of primary caregivers of patients with MD.
Schulz, Richard; Beach, Scott R.; Cook, Thomas B.; Martire, Lynn M.; Tomlinson, Jennifer M.; Monin, Joan K.
Objectives Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role. Methods A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did. Results Forty-four percent of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics. Conclusion Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress. PMID:22360296
Chandran, Devyani; Corbin, J Hope; Shillam, Casey
Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner's ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families. PMID:27143579
Kozar, Paul; Chatterjee, Karishma
This study helps facilitate health care chaplains' awareness of end-of-life communication experienced by primary caregivers. Relational dialectical theory was used to examine the discourse of twenty primary caregivers of hospice patients. The research questions guiding the study were: what competing discourses do primary caregivers experience during end-of-life care, and how do primary caregivers communicatively manage competing end-of-life discourse? In-depth interviews revealed five major competing discourses which were connected physiologically to the patient's dying trajectories: care versus cure; prolong-life versus end-life; open versus hidden; theodicy; and move-on versus don't-move-on discourse. The primary caregivers negotiated these competing discourses through educating the family, by the use of black humor, spiritualizing, ignoring opposing views, and regulating conversations. Theoretical and practical implications for interventions during end-of-life communication are discussed that may help the Chaplain and families of patients negotiate issues such as signing DNRs, impromptu visits to the hospital, and family conflicts about treatments. PMID:25255146
Juana Robledo Martín
Full Text Available Informal care of elderly people is related to gender, generation and cultural aspects. However, the important social, demographic and economical changes that have happened in Spain, have made that it has increased the difficulty to conciliate the caregiver role with other social ones, causing, as a consequence, a progressive decrease of the informal resource, that is known as “ the informal caregiver crisis”. So, immigration is helping to keep the maintenance of informal caregivers in Spain. In this study we will explore the interaction among immigrant Latin American workers as elderly caregivers in Madrid and the old person and the elderly families. A qualitative methodology will be used, developing interviews and participant observation. The study population will be composed by immigrant Latin American women who work as home caregivers of elderly dependent people that must have been living in Spain more than two years, the elderly who received their cares and their families. Data analysis will be made throughout the investigation process, using the support of the software Atlas Ti 5.0 for the discourse analysis. Results will be shared with immigrant community groups, health care professionals and scientific journals.
Klemm, Paula R; Hayes, Evelyn R; Diefenbeck, Cynthia A; Milcarek, Barry
The overall objectives of this project were to evaluate whether psychosocial outcomes in employed family caregivers of people with chronic disease, who participate in online support, differ from nonactive participants and whether psychosocial outcomes differ based on the format of online group support. A randomized longitudinal design comparing two types of online support groups and nonactive participants, on the basis of three principal measures, was utilized. Eighty-six self-reported family caregivers of people with chronic disease, who spoke English and had Internet access, took part in the study. Subjects were randomly assigned to professionally facilitated/psychoeducational or moderated/peer-directed online support groups for a period of 12 weeks. The setting was a password-protected Web page housed on a university server. Independent variables were type of online support groups and level of participation; the dependent variables were depressive symptoms, caregiver burden, and caregiver quality of life. There were significant differences in depressive symptoms and quality of life among nonactive participants and either of the two intervention groups, but not between the two intervention groups. Results suggest that professionally facilitated/psychoeducational and moderated/peer-directed online support groups help reduce depressive symptoms and improve quality of life for those who actively participate and that both types of online support groups provided similar benefits. Men and minorities should be targeted in future caregiver research. PMID:24284908
Letice Ericeira Valente
Full Text Available Caring for a demented family member has been associated with burden. Studies concerning health self-perception of family caregivers are still scarce. OBJECTIVE: To investigate caregivers perceived health and to look into relationships with patients and caregivers' sociodemographic and clinical data. METHOD: Dyads of dementia outpatients and family caregivers (n=137 were assessed with Mini Mental State Examination, Functional Activities Questionnaire, Neuropsychiatric Inventory and Clinical Dementia Rating. Caregivers answered Sociodemographic Questionnaire, Beck Depression and Anxiety Inventories, Zarit Burden Interview and Maslach Burnout Inventory. RESULTS: Caregivers poor perceived health was associated with emotional exhaustion, burden, depression and anxiety. Logistic regression analyses revealed caregivers' age, anxiety and physical problem as the main predictors of health self-perception. CONCLUSION: Aged family caregivers with anxiety who also report physical problem characterize a group at risk for poor self-perceived health. Evaluation of health self-perception may be useful for designing interventions to improve anxiety and physical health.
... review our exit disclaimer . Subscribe Coping with Caregiving Take Care of Yourself While Caring for Others It can ... also create unique challenges to caregivers. The health care costs alone can take an enormous toll. One recent study found that ...
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Røthing, Merete; Malterud, Kirsti; Frich, Jan C.
’s illness may be unpredictable or not well understood by some of those involved in the treatment and care. Aim: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington’s disease concerning collaboration with healthcare professionals. Methods: To......Background: Collaboration between family caregivers and health professionals in specialised hospitals or communitybased primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient...... shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington’s disease. Data were analysed with systematic text condensation, a crosscase...
Booker, Staja Q
African American grandparent caregiving is increasing, and evidence shows that grandparent caregiving influences health and its management. As older adults age, their potential of experiencing chronic pain increases, and this is profound given that physiological research shows that African Americans, aside from aging, may have a predisposition for developing chronic pain. Research shows older African Americans experience significant chronic pain, but few have discussed the implications of managing chronic pain in older African Americans who have added parental responsibility. Many older African Americans receive home healthcare services and there is a unique role for home healthcare clinicians in caring for this vulnerable population. This article discusses the impact of pain on caregiving, challenges in pain management, and practice and policy implications to assist home healthcare clinicians maintain the safety and protection of both the older grandparent and grandchildren. PMID:27243429
Cintia Hitomi Yamashita
Full Text Available Cross-sectional study that used the Social Network Index and the genogram to assess the social network of 110 family caregivers of dependent patients attended by a Home Care Service in São Paulo, Brazil. Data were analyzed using the test U of Mann-Whitney, Kruskal-Wallis and Spearman correlation. Results were considered statistically significant when p<0,05. Few caregivers participated in activities outside the home and the average number of people they had a bond was 4,4 relatives and 3,6 friends. Caregivers who reported pain and those who had a partner had higher average number of relatives who to trust. The average number of friends was higher in the group that reported use of medication for depression. Total and per capita incomes correlated with the social network. It was found that family members are the primary caregiver’s social network.
Full Text Available Objective To identify and analyze the significant networks of family, social and hospital support described by the family caregivers of hospitalized children 5-12 years during the hospital stay. Method Descriptive study, exploratory and qualitative study conducted with 20 caregivers of children hospitalized in a hospital in a city in southern Brazil, through semi-structured interviews and significant social networks maps, tailored to the hospital setting. Results Data analysis showed that the most active social network was comprised of families through emotional support, material aid and services. Relations with hospital health care team and the hospital context were cited as providing support to the caregivers of the hospitalized child. Conclusions The identification of social networks in the child’s hospitalization course enables equip professionals working in the institution aiming at better targeting of actions and care for the family and hospitalized children.
Full Text Available Abstract The construct of family integrity denotes that older persons' attainment of ego integrity is linked to family relationships. Family integrity is the positive outcome (overall satisfaction with life; disconnection (dissatisfaction and alienation (estrangement are the negative outcomes. This study focuses on elderly people who are primary caregivers of relatives with dementia, and examines their experience of events related to that role, which are perceived as being of influence on their sense of family integrity. The sample included 26 participants. Open-ended interviews were conducted. The interview transcripts were submitted to content analysis. The main findings suggest that caregivers who experience family integrity tend to embrace the new life demand associated with the caregiving role, while those tending towards disconnection struggle to maintain their pre-existing goals, and those experiencing alienation tend to feel helpless. Caring for a relative with dementia has an impact on multiple aspects of family life.
Zheng-Yi Goh; Ming-Ming Lai; Siok-Hwa Lau; Nazihah Ahmad
This paper examines the formal and informal caregiving for elderly in the Malaysian society under the absence of a structured long-term care environment. We surveyed 31 health care providers and 56 informal caregivers for elderly. The private for-profit care providers offer better facilities and services than non-profit centres. Females especially daughters were usually the informal caregivers to the elderly. Caregivers spent below USD$330 on long-term care expenses and relying heavily on pub...
Wojciech Mateusz Rachel; Agnieszka Turkot
Alzheimer disease (AD) caregivers experience significant changes in a social, family and professional life depending on diverse factors. The caregiver burden is mainly related to patients with behavioural disturbances (BPSD) and loss of cognitive functions. Caring for a patient with dementia directly links to significant psychological stress. It also affects the caregivers' physical and mental health. The psychiatric morbidity is higher among the caregivers population. Depression, anxiety dis...
Myaskovsky, Larissa; Posluszny, Donna M.; Schulz, Richard; DiMartini, Andrea F.; Switzer, Galen E.; Dabbs, Annette DeVito; McNulty, Mary L.; Kormos, Robert L; Toyoda, Yoshiya; Dew, Mary Amanda
Cardiothoracic transplant programs generally require that transplant recipients have family caregivers to assist them post-transplant. The burden of caregiving on the family members remains poorly understood. If caregivers’ well-being is compromised by caregiving, it may bode poorly for transplant recipients’ own health in the long-term post-transplant. We examined caregiver HRQOL during the first year after their family member’s transplant, its predictors, and its relationship to subsequent ...
Modi, Avani C.; Guilfoyle, Shanna M.; Zeller, Meg H.
Objective To document and identify predictors of caregiver health-related quality of life (HRQOL) in a sample of youth seeking obesity treatment and examine whether it moderates the relation between parent proxy and youth self-report HRQOL. Methods Youth (5–18 years) and their caregivers (N = 120) presenting to a pediatric medical weight management program completed the Pediatric Quality of Life Inventory™ and caregivers completed the Short-Form 36. Results Caregivers were predominantly overw...
Schulz, Richard; Cook, Thomas B.; Beach, Scott R.; Lingler, Jennifer H.; Martire, Lynn M.; Monin, Joan K.; Czaja, Sara J.
Objective Family caregivers generally underestimate the health and well-being of Alzheimer’s disease (AD) patients when compared to patient self-assessments. The goals of this study were to identify caregiver, patient, and contextual factors associated with caregiver rating bias. Methods 105 patients with AD and their family caregivers were assessed twice by trained interviewers one year apart. In separate interviews, caregivers were asked to rate the quality of life and suffering of their patient relative, and patients provided self-ratings using the same structured instruments. Multivariate cross-sectional and longitudinal analyses were used to identify predictors of caregiver-patient discrepancies. Results Caregivers consistently reported significantly higher levels of suffering and lower levels of quality of life than patients. Caregiver psychological well-being and health status accounted for a substantial portion of the difference in caregiver and patient ratings in both cross-sectional and longitudinal analyses. Caregiver depression and burden were consistently positively associated with the magnitude of caregiver-patient discrepancy, and caregiver health status was negatively associated with the size of the discrepancy. Conclusions Caregiver assessments of dementia patients may determine the type and frequency of treatment received by the patient, and caregivers’ ability to reliably detect change in patient status can play a critical role in evaluating the efficacy of therapeutic interventions and pharmacologic agents. Clinicians and researchers working with dementia patients who rely on caregiver reports of patient status should be sensitive to the health and well-being of the caregiver and recognize that caregiver assessments may be negatively biased when the caregiver’s own well-being is compromised. PMID:23290199
Penrod, Janice; Hupcey, Judith E.; Shipley, Peggy Z.; Loeb, Susan J.; Baney, Brenda
Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifes...
Gusdal, A. K.; Josefsson, K.; Adolfsson, E. T.; Martin, L
Background: Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden. Objective: The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home. Methods: The...
DeVries, H M; Hamilton, D W; Lovett, S; Gallagher-Thompson, D
The similarities and differences in male and female caregivers' preferred strategies for coping and the perceived helpfulness of these strategies in managing caregiving stressors were examined in this study. Respondents were 170 caregivers (139 women and 31 men) who were primary caregivers for an elderly adult relative who was either cognitively impaired or physically frail. Results provide preliminary evidence that gender is related to frequency of use but not to the perceived helpfulness of specific coping strategies. PMID:9189986
Tremont, Geoffrey; Davis, Jennifer Duncan; Bishop, Duane S.
The relationship between family functioning and dementia caregiving is complex. The present study examined the inter-relationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n = 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients’ memory/behavior problems and patients’ activities of daily living (ADLs) w...
Heima, Masahiro; Lee, Wonik; Milgrom, Peter; Nelson, Suchitra
The objective of this study was to investigate the influence of caregiver education level on children's dental caries mediated by both caregiver and child oral health behaviors. Participants were 423 low-income African American kindergarteners and their caregivers who were part of a school-based randomized clinical trial. Path analysis tested the hypothesis that caregiver education level affected untreated dental caries and cumulative overall caries experience (decayed or filled teeth) throug...
Lillian Flores Stevens; Pickett, Treven C.; Kathryn P. Wilder Schaaf; Taylor, Brent C.; Amy Gravely; Courtney Harold Van Houtven; Greta Friedemann-Sánchez; Griffin, Joan M.
This was a hypothesis-generating exploration of relationships between caregiver training during TBI/polytrauma rehabilitation and caregiver mental health. In this cross-sectional study, 507 informal caregivers to US service members with TBI who received inpatient rehabilitation care in a Veterans Affairs’ Polytrauma Rehabilitation Center from 2001 to 2009 completed a retrospective, self-report survey. Embedded in the survey were measures of caregiver mental health, including the National Inst...
Blenda Kimie Arakaki; Jaqueline Namy de Souza Tsubaki; Paulo Caramelli; Ricardo Nitrini; Marcia Maria Pires Camargo Novelli
Alzheimer’s disease (AD) is characterized as a degenerative disease that affects manydomains, including behavior and can cause burden in caregivers/family member of these individuals.The aim of the study was to analyze the caregiver burden in relation to the presence and intensityof Behavioral and Psychological Symptoms in Dementia (BPSD). We used socio demographic profile, Neuropsychiatric Inventory (NPI) and NPI - caregiver distress (NPI-D) for our evaluation.We interviewed 30 caregivers of...
Chung, Kyusuk; Essex, Elizabeth; Samson, Linda
We examined the level of hospice knowledge of caregivers of minority elderly hospice patients and determined how it influences the hospice enrollment decision and the decision on the use of hospice services after enrollment. Based on qualitative analysis of medical records and interviews with caregivers of minority elderly hospice patients who received personal care from paid caregivers (eg, other than family caregivers), we found that hospice knowledge increased access to hospice among minor...
Wong, Oi Ling; Kwong, Ping Sum; Ho, Candis Ka Yan; Chow, Susanna Miu Yee; Kwok, Timothy; Wong, Bel; Ho, Vennus; Lau, Andrew; Ho, Florence
This qualitative study explored themes that described families taking care of elderly relatives with dementia in Chinese society. Ten families were invited for two in-depth family interviews involving spousal caregivers, child caregivers, and care recipients. Five themes resulted: positive affection as coping strategies, power and control in the caregiving relationship, adult children's involvement in caregiving, sibling rivalry, and intergenerational conflicts. The ways these themes functioned and helped in dementia care, the research implications, and limitations are discussed. PMID:26399493
Joseph, Christine L. M.; Havstad, Suzanne; Johnson, Christine C.; Vinuya, Rick; Ownby, Dennis R.
It is unknown if teenagers and caregivers give similar responses when interviewed about the teen’s asthma. We analyzed data for 63 urban African-American teen-caregiver pairs. Caregivers underestimated teen smoking by 30%, gave lower estimates for teen exposure to passive smoke, and disagreed with teens on controller medication usage. Teen-caregiver responses were not significantly different for estimates of symptom-days, activity limitations, or nights awakened; nor were they significantly d...
Full Text Available This paper reports on a study in two remote multilingual Indigenous Australian communities: Yakanarra in the Kimberley region of Western Australia and Tennant Creek in the Barkly region of the Northern Territory. In both communities, processes of language shift are underway from a traditional language (Walmajarri and Warumungu respectively to a local creole variety (Fitzroy Valley Kriol and Wumpurrarni English respectively. The study focuses on language input from primary caregivers to a group of preschool children, and on the children’s productive language. The study further highlights child-caregiver interactions as a site of importance in understanding the broader processes of language shift. We use longitudinal data from two time-points, approximately two years apart, to explore changes in adult input over time and developmental patterns in the children’s speech.At both time points, the local creole varieties are the preferred codes of communication for the dyads in this study, although there is some use of the traditional language in both communities. Results show that for measures of turn length (MLT, there are notable differences between the two communities for both the focus children and their caregivers. In Tennant Creek, children and caregivers use longer turns at Time 2, while in Yakanarra the picture is more variable. The two communities also show differing trends in terms of conversational load (MLT ratio. For measures of morphosyntactic complexity (MLU, children and caregivers in Tennant Creek use more complex utterances at Time 2, while caregivers in Yakanarra show less complexity in their language at that time point. The study’s findings contribute to providing a more detailed picture of the multilingual practices at Yakanarra and Tennant Creek, with implications for understanding broader processes of language shift. They also elucidate how children’s language and linguistic input varies diachronically across time. As
De Vito Elisabetta
Full Text Available Abstract Background Alzheimer's disease presents a social and public health problem affecting millions of Italians. Those affected receive home care from caregivers, subjected to risk of stress. The present investigation focuses on stress, anxiety and depression in caregivers. Methods Data on 200 caregivers and their patients were collected using a specific form to assess cognitive, behavioural, functional patient (MMSE, and ADL-IAD and caregiver stress (CBI. The relationship between stress, depression and disease has been assessed by means of a linear regression, logistic analysis which reveals the relationship between anxiety, stress and depression and cognitive problems, age, the patient's income. Results The caregivers are usually female (64%, mean age of 56.1 years, daughters (70.5%, pensioners and housewives (30%, who care for the sick at home (79%. Of these, 53% had little time for themselves, 55% observed worsening of health, 56% are tired, 51% are not getting enough sleep. Overall, 55% have problems with the patient's family and/or their own family, 57% at work. Furthermore, 29% feel they are failing to cope with the situation as they wish to move away from home. The increase in the degree of anxiety and depression is directly proportional to the severity of the illness, affecting the patient (r = 0.3 stress and depression r = 0.4 related to CBI score. The memory disorders (OR = 8.4, engine problems (OR = 2.6, perception disorders (OR = 1.9 sick of the patient with Alzheimer's disease are predictive of caregiver stress, depression is associated with the presence of other disorders, mainly behavioural (OR = 5.2, low income (OR = 3.4, patients Conclusion The quality of life of caregivers is correlated with the severity of behavioural disorders and duration of the Alzheimer's disease. The severity of the disease plays an important role in reorganization of the family environment in families caring for patients not institutionalised. It is
Thomas F. Fisher PhD, OT, FAOTA
Full Text Available This study explores the perception of satisfaction of caregivers who attended a feeding clinic at a large pediatric hospital in the midwest. The clinic is designed for a multidisciplinary team to meet with the child and the caregiver. Thirty-five participants were involved in the study. Results indicated that most participants were satisfied with the clinic experience. However, there were areas of care not covered by the members of the feeding team, which indicates a need. It is suggested that this need could be filled by occupational therapists.
Ripich, D N
The loss of functional communication in Alzheimer disease (AD) results from the disproportionate breakdowns in the pragmatic and semantic areas of language in these patients. Communication breakdown is regularly listed among the top four stressors in measures of stress and burden of AD caregivers. A caregiver training program designed around seven specific communication strategies can be used to alter communication interactions. As a pilot program, the acronym FOCUSED organized the seven strategies for easy recall (Face-to-face, Orientation, Continuity, Unsticking, Structure, Exchanges, and Direct). Significant differences in both attitude toward AD patients, knowledge of AD, and knowledge of communication strategies were shown in comparisons of pre- and posttraining assessments. PMID:7999352
Full Text Available This study explored the role of time since diagnosis and whether the care recipient was a child, a parent, or a spouse, on caregiver’s perceptions of the caring role, with a group of 269 female cancer caregivers. Questionnaire measures were used to explore psychological and social resources and psychological distress. Analysis of variance and hierarchical multiple regression were used and identified significant effects of time since diagnosis and care recipient. This study concludes that a more tailored approach to understanding the needs of caregivers is required particularly in terms of time since diagnosis and care recipient, in order to provide more effective support.
Perrin, Paul B; Norup, Anne; Caracuel, Alfonso;
OBJECTIVE: The purpose of this study was to use actor-partner interdependence modeling (APIM) to examine the simultaneous effects of both acquired brain injury (ABI) patient and caregiver ratings of patient impairments on both patient and caregiver ratings of caregiver psychosocial dysfunction...
Wiley, Rachel E.; Berman, Steven L.
The present study addresses the relationships of caregiver identity status on their adolescent children's identity distress and psychological symptom severity among a sample of adolescents (age 12-19) in treatment at a community mental health center (N = 60 caregiver-child dyads). A significant proportion of caregivers (10%) and their adolescent…
Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A
The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training. PMID:26782869
Musil, Carol M.; Gordon, Nahida L.; Warner, Camille B.; Zauszniewski, Jaclene A.; Standing, Theresa; Wykle, May
Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the…
Schulz, Richard; Hebert, Randy S.; Dew, Mary Amanda; Brown, Stephanie L.; Scheier, Michael F.; Beach, Scott R.; Czaja, Sara J.; Martire, Lynn M.; Coon, David; Langa, Kenneth M.; Gitlin, Laura N.; Stevens, Alan B.; Nichols, Linda
The purpose of this article is to stimulate discussion and research about patient suffering and caregiver compassion. It is our view that these constructs are central to understanding phenomena such as family caregiving, and that recognizing their unique role in the caregiving experience provides new directions for intervention research, clinical…
Myaskovsky, Larissa; Posluszny, Donna M.; Schulz, Richard; DiMartini, Andrea F.; Switzer, Galen E.; Dabbs, Annette DeVito; McNulty, Mary L.; Kormos, Robert L.; Toyoda, Yoshiya; Dew, Mary Amanda
Cardiothoracic transplant programs generally require that transplant recipients have family caregivers to assist them post-transplant. The burden of caregiving on the family members remains poorly understood. If caregivers’ well-being is compromised by caregiving, it may bode poorly for transplant recipients’ own health in the long-term post-transplant. We examined caregiver HRQOL during the first year after their family member’s transplant, its predictors, and its relationship to subsequent patient survival. Adult (aged 18+) caregivers of 242 cardiothoracic transplant recipients (lung=134; heart=108) completed assessments of demographics, psychosocial characteristics, and caregiver burden at 2 months post-transplant, and HRQOL at 2, 7 and 12 months post-transplant. Recipients’ survival time was obtained from medical records. Caregiver HRQOL was generally high across the first year post-transplant in emotional and social functioning; caregiver physical functioning significantly worsened. There were no differences by type of recipient transplant. Greater caregiver burden predicted poorer caregiver HRQOL in several physical domains at 12 months post-transplant. Transplant recipients whose caregivers had lower perceived general health at 12 months post-transplant showed poorer survival rates during the subsequent 7 years of follow-up. Transplant teams should identify those caregivers at risk for poorer general health post-transplant in order to maximize positive outcomes for the entire family. PMID:22958758
Mason, Bernadette J; Harrison, Barbara E
Family caregivers of patients with dementia experience caregiver burden and need holistic nursing interventions, such as telephone support. This article reviews the literature on telephone support interventions for family caregivers of patients with dementia and describes evidence-based holistic nursing practices within Watson's theory of human caring, which focuses on transpersonal caring relationships. PMID:18981815
Unwin, Gemma; Deb, Shoumitro
The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…
Dura, Jason R.; Kiecolt-Glaser, Janice
There is growing evidence that the stress of caring for a relative with Alzheimer's disease may have adverse effects on the caregivers. This study was conducted to explore the mental health consequences of caregiving. Psychological data and mental health status information were obtained from 50 Alzheimer's disease spousal caregivers and from 50…
Waldrop, Deborah P.
Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression,…
Gwyther, Lisa P.; George, Linda K.
This symposium includes three papers that provide new insights into the caregiving experience. Papers focus upon a group of caregivers who appear to be at special risk for negative outcomes, the family caregivers of older persons suffering from Alzheimer's Disease or a related disorder. (Author/ABB)
Land, Helen; Guada, Joseph
The study of caregiver burden is important for those faced with chronic illnesses such as AIDS as caregivers are the first line of care provision, sustaining care recipients in the home. Because perception of burden may vary across caregiver cultural groups, accurate measurement of burden is crucial to offer culturally sensitive services for those…
Famakinwa, Abisola; Fabiny, Anne
Forty medical residents from major teaching hospitals in Boston, Massachusetts, participated in small group teaching sessions about caregiver stress. A teaching tool was developed that included a teaching handout, interactive cases, standard instruments for assessing caregiver stress, peer-reviewed articles about caregiving, and a list of…
George, Carol; Solomon, Judith
A study concerning the mother's mental representation of herself as a caregiver focused on: (1) a conceptual framework developed for the purpose of describing and explaining internal working models of caregiving; and (2) efforts to define caregivers' representations of content and process that seem to be associated with attachment insecurity.…
Raschick, Michael; Ingersoll-Dayton, Berit
Using a social exchange perspective and data from a national sample of 978 spouse and child caregivers of older family members, this study assessed the association between caregiver relationship and gender and the costs and rewards of caregiving. We also evaluated whether relationship and gender moderate the effects of helpfulness on caregiver…
Beisse, Kay; Tyre, Ashli
This study was an exploratory investigation of caregiver involvement in the education of youth in foster care. In this study, foster caregivers reported that they are involved in the education of children in their care and participate in at-home involvement activities more often than at-school involvement activities. Caregivers in this study…
Kheir, Nadir; Ghoneim, Ola; Sandridge, Amy L.; Al-Ismail, Muna; Hayder, Sara; Al-Rawi, Fadhila
Introduction: Caring for a child diagnosed with autism could affect the quality of life of the caregiver in various different ways. No previous research has assessed the quality of lives of caregivers of children with autism in Qatar. Methods: Caregivers of a child with autism between 3 and 17 years old were recruited from child rehabilitation…
Szinovacz, Maximiliane E.; Davey, Adam
Family caregiving research is increasingly contextual and dynamic, but few studies have examined prevalence and predictors of change in primary caregivers, those with the most frequent contact with healthcare professionals. We identified prevalence and predictors of 2-year change in primary adult-child caregivers. Data pooled from the 1992-2000…
Hendricks, Charlene; Lansford, Jennifer E.; Deater-Deckard, Kirby; Bornstein, Marc H.
Using nationally representative samples of 45,964 two- to nine-year-old children and their primary caregivers in 17 developing countries, this study examined the relations between children's cognitive, language, sensory, and motor disabilities and caregivers' use of discipline and violence. Primary caregivers reported on their…
Friedman, Mollie; Woods, Juliann; Salisbury, Christine
Early intervention (EI) providers increasingly coach and collaborate with caregivers to strengthen and support caregiver-child interactions. The EI providers learning to coach other adults benefit from knowing what, exactly, they should do to support caregivers. This article serves two purposes. First, it proposes an operationally defined,…
... loved ones are comfortable and safe. Whether caring for a parent, relative, or child, our Nation’s... who could not otherwise look after themselves. Caregiver support is at the heart of my Administration... help and encouragement to family caregivers. The National Family Caregiver Support Program and...
Undheim, Anne Mari; Drugli, May Britt
The aim of this study was to explore the views of parents and caregivers on the optimal age for enrolment in childcare. The sample consisted of 41 parents of children aged 18 months or less who were in childcare (22 boys and 19 girls), and 34 of their caregivers. Parents and caregivers were interviewed using a semi-structured interview. Both…
Moore, Jenifer; Yin, Lishu; Weaver, Tandi; Lydell, Peggie; Logan, Suzette
The purpose of this study was to examine preschool caregivers' perceptions of the effect of gender on literacy skills. The five caregivers selected for the study were all female and full-time employees of the preschool. Case studies (including interviews, observations, and documentation) of each of the caregivers were conducted to examine their…
Huang, Chiung-Yu; Musil, Carol M.; Zauszniewski, Jaclene A.; Wykle, May L.
The purpose of this study was to explore the relationship of demographic characteristics, contextual factors, social support, and coping on health outcomes of family caregivers of older adults with dementia in Taiwan. This study also examined caregiving stress and whether support moderated the effects of caregiver stress on health. Lazarus and…
Kuo, Caroline; Fitzgerald, Jane; Operario, Don; Casale, Marisa
Drawing upon a sample of 1,599 adults caring for children in HIV-endemic Umlazi Township in South Africa, this cross-sectional survey investigated whether perceived social support varied among caregivers of AIDS-orphaned children (n = 359) as compared with caregivers of children orphaned by other causes (n = 171) and caregivers of nonorphaned…
Chessick, Cheryl A.; Perlick, Deborah A.; Miklowitz, David J.; Kaczynski, Richard; Allen, Michael H.; Morris, Chad D.; Marangell, Lauren B.
We examined whether caregivers of bipolar patients reporting current suicidal ideation and/or a history of a suicide attempt reported higher levels of burden and/or poorer health compared to caregivers of patients without these suicidality indices. In a cross-sectional design, caregivers (N = 480) associated with (a) patients with current suicidal…
Thompson, Rachel H.; Bruzek, Jennifer L.; Cotnoir-Bichelman, Nicole M.
We observed 11 undergraduates in an experiment designed to simulate infant caregiving. In negative reinforcement conditions experienced by all participants, a targeted caregiving response (e.g., rocking a baby doll) produced escape from, and avoidance of, a recorded infant cry. Nine participants' caregiving was shown to be controlled by this…
Eisdorfer, Carl; Czaja, Sara J.; Loewenstein, David A.; Rubert, Mark P.; Arguelles, Soledad; Mitrani, Victoria B.; Szapocznik, Jose
Purpose: The majority of persons with Alzheimer's disease (AD) are cared for at home by a family member such as a spouse or daughter. Caregiving places enormous demands on these caregivers, and the negative consequences associated with caregiving are well documented. This paper reports results from the Miami site of the REACH (Resources for…
Full Text Available This study investigated the effects of hospital Clown Doctors intervention on child and caregiver preoperative anxiety at the entrance to the surgery care unit and separation from caregivers. A total of 88 children (aged 4-12 years were assigned to one of the following two groups: Clown Doctors intervention or control group (standard care. Independent observational records using the modified Yale Preoperative Anxiety Scale instrument assessed children’s anxiety, while the State-Trait Anxiety Inventory measured caregiver’s state anxiety. In addition, caregivers assessed the children’s functional health problems by completing the Functional Status Questionnaire. Although no effects of Clown Doctors were found on children’s anxiety, results showed that both low functional health problems and Clown Doctors intervention were significant predictors of lower caregiver anxiety. Caregivers also reported being very satisfied with their intervention. Overall, this study demonstrated the positive role of Clown Doctors for caregivers at a specific paediatric hospital setting.
Luchsinger, José; Mittelman, Mary; Mejia, Miriam; Silver, Stephanie; Lucero, Robert J.; Ramirez, Mildred; Kong, Jian; Teresi, Jeanne A.
Objectives Dementia prevalence and its burden on families are increasing. Caregivers of persons with dementia have more depression and stress than the general population. Several interventions have proven efficacy in decreasing depression and stress in selected populations of caregivers. Hispanics in New York City tend to have a higher burden of dementia caregiving compared to non-Hispanic whites (NHW) because Hispanics have a higher prevalence of dementia, tend to have high family involvemen...
Cross-sectional study that used the Social Network Index and the genogram to assess the social network of 110 family caregivers of dependent patients attended by a Home Care Service in São Paulo, Brazil. Data were analyzed using the test U of Mann-Whitney, Kruskal-Wallis and Spearman correlation. Results were considered statistically significant when p
Findlay, Laura; Williams, Amanda C. de C.; Baum, Sandra; Scior, Katrina
Background: Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain-related behaviours and report them, but little is known as to how they experience their role. Methods: Information was collected from 11 caregivers…
Bigbee, Jeri L.; Musil, Carol; Kenski, Diane
Purpose: The purpose of this study was to compare the characteristics of rural versus urban caregiving grandmothers along with their physical and mental health status. Methods: A secondary analysis of data produced from the first wave of a longitudinal study of 485 Ohio grandmothers was conducted. Health status was measured using the SF-36 Health…
Hooker, Karen; And Others
Examined personality factors and coping strategies among 50 spouse caregivers of patients diagnosed with Alzheimer's disease or related dementia. Results showed that personality traits explained 60% of variance in emotion-focused coping, 30% of variance in problem-focused coping, and 15% of variance associated with social support coping.…
Williamson, Gail M.; Schulz, Richard
Examined strategies used by 170 Alzheimer's disease caregivers to cope with memory deficits, communication impairments, and decline of loved one. Wishfulness was related to more depressed affect, regardless of stressor type. Relaxation in response to memory deficits, and acceptance in dealing with communication impairments and decline of loved one…
Granello, Paul F.; Fleming, Matthew S.
Alzheimer's disease is a progressive condition that results in brain wasting and eventual death. With its increasing diagnosis rate, counselors will likely acquire clients with Alzheimer's disease or their caregivers. Important background information and several practical counseling methods are provided that may assist counselors working with this…
Brinton, Bonnie; Fujiki, Martin
This article focuses on two aspects of emotional intelligence, emotion understanding and emotion regulation. These abilities are important because of their impact on social communication and the way in which they influence a child's access to knowledge. Caregivers who engage their children in emotion talk may strengthen the ability of their…
Cristina Anguita Carpio
Full Text Available Family is the main care source for the dependent person. The act of looking after somebody, involves the development of multiple tasks, apart from spending a lot of time. This implies a series of requirements that would be able to damage the family caregivers’ quality of life, and definitively, their health. Objetive: training for family caregivers to provide quality care, in order to succeed in this project, we establish three specific aims: improving the information and training, increase self-care abilities and focus on resources and support services for informal caregivers. Methods: We are going to implement an educative intervention in a group of 12 informal caregivers of people over 65 years, dependent on chronic diseases and develop home care. The program will be composed of 10 sessions, each one of two-hour-long. The first session will consist of an introduction and the last session will be reserved to solve doubts and to deal with the assessment of the program. Throughout the rest of sessions, contents about training, self, resources and assistance services for caregivers will be proposed. In order to evaluate the efficiency of the program, a multiple choice questionnaire will be taken both al the beginning and at the end of the different sessions. In order to evaluate the human resources and the applied methodology, another questionnaire will be passed.
The purpose of this study is to explore the playfulness of the teachers of infants and its relations to infants' emotional distress during the transitional time at a child care centre. The study used a qualitative case study. Two infant caregivers in a university-based child care centre participated in this study. For the three-month research…
Braaf, Sandra; Ameratunga, Shanthi; Teague, Warwick; Jowett, Helen; Gabbe, Belinda
Paediatric trauma can result in significant levels of on-going disability. The aim of this study was to explore the restrictions on activity participation that children experience following serious injury from the perspective of their caregivers. We performed a thematic analysis of transcripts of semi-structured in-depth interviews with the caregivers of 44 seriously injured children, conducted three-years after the injury, and purposively sampled from a population-based cohort study. Both temporary and on-going restrictions on school, sport, leisure and social activities were identified, some of which were imposed by caregivers, schools, or recommended by health providers. The perceived risk of further injury, physical restrictions, emotional state and fatigue levels were important influences on degrees of activity restriction. Children who were socially less engaged, especially those who were more severely injured, had difficulty making and retaining friends, and exhibited signs of depression or social withdrawal. The activities of pre-school children were strongly regulated by their caregivers, while school age children faced obstacles with participation in aspects such as study, sport, and peer and teacher relationships, affecting learning, school attendance and enjoyment. The findings highlight the need for primary prevention and reducing the impacts of serious injury throughout the continuum of care. PMID:27399741
Wang, Donna S.
Dementia can be debilitating not only for the older adult suffering from memory loss and confusion, but for family members as well. Understanding caregiving for ethnic minorities is critical. In Asian communities, addressing dementia and other mental health issues can be compounded by cultural factors such as perceptions of mental health and…
Santelices, Maria Pia
Background: This exploratory study examines the relationship between stress and caregiver sensitivity among non-parental childcare centre staff who attend Chilean daycare centres serving low-income children between 12- and 24-months-old. Method: Participants were 23 childcare providers (nine teachers and 14 childcare technicians) who were…
Bonach, Kathryn; Mabry, J. Beth; Potts-Henry, Candice
This study is a case evaluation research report on one Children's Advocacy Center that provides a coordinated response to allegations of child maltreatment, particularly sexual abuse. The data come from a mailed survey of nonoffending caregivers measuring their satisfaction with services provided through the Children's Advocacy Center. The results…
Jones, Lisa M.; Atoro, Kathryn E.; Walsh, Wendy A.; Cross, Theodore P.; Shadoin, Amy L.; Magnuson, Suzanne
Qualitative responses by caregivers (n = 203) and youth (aged 8 and older; n = 65) about their experiences with sexual abuse investigations were analyzed in conjunction with quantitative ratings of satisfaction. Respondents described mostly high levels of satisfaction, although dissatisfaction was reported with some key aspects of investigations.…
Kirby, Anne V; Little, Lauren M; Schultz, Beth; Watson, Linda R; Zhang, Wanqing; Baranek, Grace T
Children with autism spectrum disorder often demonstrate unusual behavioral responses to sensory stimuli (i.e., sensory features). To manage everyday activities, caregivers may implement strategies to address these features during family routines. However, investigation of specific strategies used by caregivers is limited by the lack of empirically developed measures. In this study, we describe the development and pilot results of the Caregiver Strategies Inventory (CSI), a supplement to the Sensory Experiences Questionnaire Version 3.0 (SEQ 3.0; Baranek, 2009) that measures caregivers' strategies in response to their children's sensory features. Three conceptually derived and empirically grounded strategy types were tested: cognitive-behavioral, sensory-perceptual, and avoidance. Results indicated that the CSI demonstrated good internal consistency and that strategy use was related to child age and cognition. Moreover, parent feedback after completing the CSI supported its utility and social validity. The CSI may be used alongside the SEQ 3.0 to facilitate a family-centered approach to assessment and intervention planning. PMID:27294999
Einollahi Behzad; Taheri Saeed; Nemati Eghlim; Abbaszadeh Shahin; Pourfarziani Vahid; Nourbala Mohammad
Burden among care-givers of chronically ill patients has been widely investigated. However, there is no study evaluating perceived pressure on care-givers of kidney transplant recipients. This study aimed to evaluate the effect of care-giving to renal transplant recipients in Iranian Muslim population and to analyze factors associated with it. A cross-sectional study was carried out involving 41 care-givers of renal recipients. The Care-giver Burden Scale (CB Scale) was used to evaluate the c...
Drake, Pamela Marie; Greenspoon, Bayla; Unti, Lisa; Fawcett, Linda K.; Neville-Morgan, Sarah
Family, friend and neighbor (FFN) child caregivers represent a significant proportion of caregivers for young children. Yet, these caregivers receive little support for their services. In 2003, the First 5 California Children and Families Commission (First 5 California) began a study to determine the work-related needs of FFN caregivers in…
Garand, Linda; Lingler, Jennifer H.; Deardorf, Kaitlyn E.; DeKosky, Steven T.; Schulz, Richard; Reynolds, Charles F.; Dew, Mary Amanda
Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer’s Disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms and marital quality. Mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty functioning whereas MCI caregivers focused on themes of “missing the person” they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden and higher depression levels each bore independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief. PMID:21946013
Full Text Available To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD.This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA. Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient's visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient's visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.
Srinivasagopalan, Nappinnai, Solayappan
Full Text Available Background: Caregivers of individuals suffering from cancer illnesses are at risk of having subjected to mental health consequences. There is a paucity of data comparing the caregiver burden of cancer breast and cancer cervix patients. Aim: The aim of the present study is to compare the caregiver burden of cancer breast and cancer cervix patients. To study the association of caregiver burden with demographic factors like age, gender, duration of caregiving etc. Materials & Methods: This Cross sectional study is performed on the key relatives of patients of 31 cancer cervix and 31 cancer breast patients. Burden assessment schedule was used. Results: Our findings suggest burden is more in male caregivers of breast cancer patients. It is not so in caregivers of cancer cervix patients. Whenever the caregiver is closely related to the patients the burden is high in both groups. Whenever the burden scores were high the depression scores were also high. Treatment modalities as a whole correlates with burden scores in caregivers of breast cancer patients but not in cancer cervix patients. Conclusion: Caregivers with breast and cervical cancer patients are vulnerable if the caregiver is male, from low socioeconomical background, more closely related and when the patients received poor treatment modalities.
Full Text Available Relationship quality and elder caregiver burden in India The purpose of this study was to examine the psychosocial factors that contribute to burden among Asian Indian caregivers of the elderly in Allahabad, India. Within this context of caregiving, the importance of relationship quality as a determinant of burden was examined in 259 Asian Indian families. A stress process model was utilized to explain the quality of relationship between the caregiver and the elderly persons. Another factor predicting burden was role overload. In addition, it was found that there were several indirect effects through relationship quality that predicted burden. The findings suggest that psycho educational interventions may be gainfully used to reduce burden among caregivers of elderly in India. Mantelzorg in India: de kwaliteit van de relatie tussen mantelzorger en zorgbehoevende oudere en de ervaren zorg last In deze studie staat de relatie tussen diverse psychosociale factoren en de ervaren zorg last van mantelzorgers (van ouderen in Allahabad (India centraal. Als belangrijke voorspeller van de ervaren zorg last wordt “de kwaliteit van de relatie” tussen mantelzorger en zorgbehoevende gezien. Deze wordt in de theoretische verkenning van het artikel verder uitgewerkt aan de hand van een zogenaamd “stress-proces-model”. Op basis van vragenlijstonderzoek, uitgevoerd onder 259 families, wordt geconcludeerd dat “overbelasting” een belangrijke voorspeller van zorg last is. Ook blijken er verscheidene indirecte effecten van de kwaliteit van de relatie te zijn. De uitkomsten suggereren dat er een mogelijke rol voor psychosociale interventies in het reduceren van de ervaren zorg last onder mantelzorgers in India is weggelegd.
Neundorfer, M M
The effects of different coping patterns on the physical health, depression, and anxiety experienced by 60 spouse caregivers of persons with dementia were examined, using Lazarus and Folkman's cognitive model of stress and coping. In addition to coping, the model included the following predictors: severity of the patient's memory and behavior problems, caregiver's appraisal of the stressfulness of those problems, and caregiver's appraisal of their options for managing caregiving. The predictors did not explain a significant amount of the variance in caregivers' physical health, but they did explain 43% of the variance in both depression and anxiety. The only coping pattern that added to the explanations was Wishing-Emotive coping, which consisted of the coping subscales of escape-avoidance, confrontive coping, and accepting responsibility. Caregivers' appraisal of stress was a significant predictor of depression and anxiety, but neither the severity of the patients' problems nor caregivers' appraisal of options was a significant predictor of any of the health outcomes. PMID:1896322
Xiao, Lily Dongxia; De Bellis, Anita; Kyriazopoulos, Helena; Draper, Brian; Ullah, Shahid
Most caregiver interventions in a multicultural society are designed to target caregivers from the mainstream culture and exclude those who are unable to speak English. This study addressed the gap by testing the hypothesis that personalized caregiver support provided by a team led by a care coordinator of the person with dementia would improve competence for caregivers from minority groups in managing dementia. A randomised controlled trial was utilised to test the hypothesis. Sixty-one family caregivers from 10 minority groups completed the trial. Outcome variables were measured prior to the intervention, at 6 and 12 months after the commencement of trial. A linear mixed effect model was used to estimate the effectiveness of the intervention. The intervention group showed a significant increase in the caregivers' sense of competence and mental components of quality of life. There were no significant differences in the caregivers' physical components of quality of life. PMID:25805891
Gillespie, Robyn J; Harrison, Lindsey; Mullan, Judy
This qualitative study explored the medication management experiences of Australian ethnic minority family caregivers of people living with dementia. From the perspective of this group of caregivers, medication management was a source of stress resulting from the progressive loss of ability of care recipients to manage their own medications; the complexity of the medication regime and the caregiver's lack of trust of the care recipient to safely and effectively manage medications. Caregivers used various strategies to manage medications and avoid conflict with care recipients including being watchful and involving other family members in medication management tasks. Family caregivers indicated that a lack of information and access to support to inform their medication management role added to their stress, which was exacerbated in some cases by limited English proficiency. Supportive factors noted by caregivers included a well-established relationship with a community pharmacist, involvement of a geriatrician, family support and caregiver support group participation. PMID:24339089
Fox, K; Hinton, W L; Levkoff, S
This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate "lesser burden" among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of "burden" and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course. PMID:10647946
The dependence scale has been designed to be sensitive to the overall care needs of the patient and is considered distinct from standard measures of functional ability in this regard. Little is known regarding the relationship between patient dependence and caregiver burden. We recruited 100 patients with Alzheimer\\'s disease or mild cognitive impairment and their caregivers through a memory clinic. Patient function, dependence, hours of care, cognition, neuropsychiatric symptoms, and caregiver burden were assessed. Dependence was significantly correlated with caregiver burden. Functional decline and dependence were most predictive of caregiver burden in patients with mild impairment while behavioral symptoms were most predictive in patients with moderate to severe disease. The dependence scale demonstrated good utility as a predictor of caregiver burden. Interventions to reduce caregiver burden should address patient dependence, functional decline, and behavioral symptoms while successful management of the latter becomes more critical with disease progression.
Ruiz-Robledillo, Nicolás; Romero-Martínez, Ángel; Moya-Albiol, Luis
Caring for an offspring with an eating disorder (ED) is associated with high levels of distress, and health problems. Indeed, ED caregivers have to cope with a range of challenges related to their caring role, which represents a chronic stress situation. This tends to alter body homeostasis and caregivers' health status. This study aimed to analyse the electrodermal reactivity and psychological response to acute stress in ED caregivers compared to non-caregivers. As expected, caregivers showed lower electrodermal (p < .001, η2partial = .269 for SCL and p < .01, η2partial = .214 for NSCRs) and psychological response (p < .05, η2partial = .198) to acute stress than non-caregivers. The findings suggest the existence of physiological adaptation to chronic stress in family caregivers of people with EDs. PMID:27160010
Miller, Andrew D.; Mishra, Sonali R.; Kendall, Logan; Haldar, Shefali; Pollack, Ari H.; Pratt, Wanda
Informal caregivers, such as close friends and family, play an important role in a hospital patient’s care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers’ role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients’ care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.
Zhang, Amy Y; Zyzanski, Stephen J; Siminoff, Laura A
This study examined the differences of opinion between cancer patients and caregivers with regard to treatment and care decisions. 184 advanced lung cancer patients and 171 primary caregivers were recruited as a convenience sample from hospitals in Cleveland, Ohio. A telephone interview was conducted to collect data using a semi-structured questionnaire. Nonparametric tests and regression analysis were performed. The findings showed that patients and caregivers reported significant disagreement on three main issues: trade-off between treatment side effects and benefits; reporting treatment side effects to physicians, and hospice care. Caregivers were more concerned about patient's quality of life and more willing to discuss hospice issues than were patients (p caregivers (p caregiver disagreement about treatment and care decisions and its significant adverse impact on both patients and caregivers. PMID:20137849
Patrícia Paes Araujo Fialho
Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.
The purpose of this research was to examine the effects of teaching primary caregivers to conduct formative assessment procedures on the development of social interactions between themselves and their infants who were born prematurely and had low birth weight, and who were from economically disadvantaged families. Children's overall development…
Ruiz-Robledillo, Nicolás; González-Bono, Esperanza; Moya-Albiol, Luis
Several studies have found disruptions in cortisol awakening response in informal caregivers. Institutional support may modulate these effects, and this study analyses how the health of caregivers is affected when institutional support is provided for families of people with high-functioning autism. Self-reported health, depression and cortisol awakening response were analysed in three groups: supported caregivers, non-supported caregivers and non-caregivers. Non-supported caregivers presented higher somatic symptoms and lower cortisol awakening response than the supported caregiver and non-caregiver groups. A high number of somatic symptoms and low functionality of offspring were related to a lower cortisol awakening response only in the non-supported caregiver group. These findings demonstrate the importance of institutional support for improving the health of caregivers. PMID:23933951
Siminoff, Laura A.; Wilson-Genderson, Maureen; Baker, Sherman
Objective This study investigated depressive symptomatology in lung cancer patients and their identified caregiver. Methods We conducted semi-structured interviews and administered measures of family environment, depressive symptomatology, and the extent to which the caregiver blamed the cancer on the patient not having taken better care of him/herself to 190 patient-caregiver dyads. Multivariate two-level models were used to estimate the unique effects for each dyad member and cross-partner effects while controlling for interdependencies in the data. Results More than half of patients (55%) were male but 74% of caregivers were female. The majority (57.4%) were spouses, followed by offspring and other family or friends The baseline model with covariates showed that younger caregivers, spouse caregivers, and caregivers who blamed the patient for the cancer had higher depressive symptom scores. When examining the unique effect for each dyad member, with the exception of patient report of familial conflict, patient and caregiver reports of lower familial cohesion and expressiveness and higher conflict were associated with higher depression scores for patient and caregiver respectively. When examining cross-partner effects, patient reports of lower cohesion, lower expressiveness and greater conflict were associated with higher caregiver depression scores. Offspring caregivers reported less depression than non-offspring caregivers. Conclusion The family environment and blaming the patient during times of illness can affect both patient and caregiver depression. Findings suggest that quality of the family dynamic is important for patients but may be particularly influential for caregivers. Future research should aid clinicians' assessment of family environment when making treatment plans. PMID:20119935
Full Text Available Abstract Background Providing care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL of informal caregivers. To date, there is no existing caregiver quality of life measure for dementia caregivers with breadth of coverage or that is applicable to caregivers of diverse ethnic backgrounds. The purpose of this study was to develop and evaluate a caregiver-targeted quality-of-life measure (CGQOL for informal caregivers of persons with dementia that can be used with caregivers from a variety of ethnicities. Methods 91 items were field tested by telephone interviews with 179 English-speaking and 21 monolingual Spanish-speaking caregivers of persons with dementia. Repeat interviews were conducted with 71 caregivers. Administration time, scale score distributions, item-scale correlations, reliability, and associations of scales with patient and caregiver demographic and caregiving characteristics were estimated. Structure of associations among scales was examined using exploratory factor analysis. Results Item analysis yielded 80 items distributed across 10 scales, with median administration time of 17 minutes [IQR 13.5–22 minutes] and minimal missing data. There were few floor or ceiling effects in scale score distributions. Internal consistency reliability was ≥ 0.78 for all scales; test-retest reliability (intraclass correlation estimates exceeded 0.70 for 6 scales. More hours weekly spent in caregiving was uniquely associated with worse quality of life on 8 scales (p's ≤ 0.05. Three higher-order dimensions of caregiving assistance, emotional and social concerns, and spirituality and benefits were identified. Conclusion These preliminary results support subsequent evaluation of test-retest reliability, construct validity, and responsiveness to change of this quality-of-life measure for caregivers from diverse ethnicities.
Lebrec, Jeremie; Ascher-Svanum, Haya; Chen, Yun-Fei; Reed, Catherine; Kahle-Wrobleski, Kristin; Hake, Ann Marie; Raskin, Joel; Naderali, Ebrahim; Schuster, Dara; Heine, Robert J; Kendall, David M.
Background The burden on caregivers of patients with Alzheimer’s disease (AD) is associated with the patient’s functional status and may also be influenced by chronic comorbid medical conditions, such as diabetes. This post-hoc exploratory analysis assessed whether comorbid diabetes in patients with AD affects caregiver burden, and whether caregivers with diabetes experience greater burden than caregivers without diabetes. Caregiver and patient healthcare resource use (HCRU) were also assesse...
Umemura Tomotaka; Jacobvitz Deborah; Messina Serena; Hazen Nancy
This study tested Bowlby and Ainsworth’s hypothesis that a hierarchy of caregivers exists whereby infants prefer one caregiver over another when distressed. We examined parent gender (mother vs. father), primary caregiver status (defined as the parent who spent most time with the infant and performed most of the caregiving tasks), and role of toddlers’ history of attachment security with each parent, as predictors of toddlers’ preference for a particular caregiver when the toddlers are distre...
Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard
Objective The objective of this study was to examine the role of social support in predicting depression in caregivers of adults aging with spinal cord injuries (SCI). Design Cross-sectional secondary data analyses were conducted for this study. Setting Participants were recruited from multiple community locations in Pittsburgh, PA and Miami, FL. Subjects Community-dwelling caregivers of aging adults with SCI (N=173) were interviewed as part of a multisite randomized clinical trial. Main measures The Center for Epidemiological Studies Depression Scale measured caregiver depression symptom levels. A hierarchical multiple regression analysis examined the effect of social support (social integration, received social support, and negative social interactions) on depressive symptoms levels for the caregivers of adults aging with SCI, controlling for demographic characteristics and caregiving characteristics. Results Caregivers were, on average, 53 years old (SD=15) and care-recipients were 55 years old (SD=13). Average Center for Epidemiological Studies Depression Scale scores indicated that sixty-nine (40%) caregivers had significant depressive symptoms (mean 8.69, SD=5.5). Negative social interactions (β̂ =.27, P<.01) and social integration (β̂ =−.25, P<.01) were significant independent predictors of depressive symptom levels in caregivers of adults aging with SCI. Conclusions Findings demonstrate that negative social interactions and social integration are associated with burden in caregivers of adults aging with SCI. Negative social interactions and social integration should be investigated in assessments and interventions intended to target caregiver depressive symptom levels. PMID:23117350
Fabiola Yonte Huete
Full Text Available Cross-sectional observational study of 50 caregivers of dependent patient immobilized. We analyzed the sociodemographic characteristics, type and characteristics of care, social, emotional and quality of life of main caregivers. Sociodemographic and care characteristics related to dependent patient immobilized was also studied. Objective: Describing the profile of dependent patient immobilized and their caregiver, and the emotional and social characteristics perceived by the main caregiver. Results: The age of dependent patient immobilized is rising particulary in women, with mental deterioration and dementia as principal diseases. The most of main caregivers are women, married women and daughters of dependent patient immobilized patients, with primary studies, in the middle age. They work almost the complete day in patient care, having less than two hour for themselves. The lack of money is the principal need felt it. The most of caregivers suffer mild to moderate stress and higher anxiety levels than general population, especially in females. Caregiver perceived quality of life is lower than general population too. Conclusions: To know the profile of dependent patient immobilized patient´s caregiver and the factors perceived burden caregiver´s, it is important developing interventions and plans to improve their quality of life related to health in order to reduce the syndrome of main caregiver.
Full Text Available Timothy Kwok,1,2 Alma Au,3 Bel Wong,1 Isaac Ip,1 Vivian Mak,1 Florence Ho11Jockey Club Centre for Positive Ageing, 2Department of Medicine and Therapeutics, Chinese University of Hong Kong; 3Department of Applied Social Sciences, Hong Kong Polytechnic University, Hong KongPurpose: Family caregivers of persons with dementia (PWD may receive caregiver training because of logistical constraints and privacy concerns. This study evaluated the effectiveness of an online intervention for family caregivers of PWD in improving their self-efficacy in managing behavioral and psychological symptoms of dementia (BPSD, and their emotion well-being.Subjects and methods: A total of 36 family caregivers of people with dementia participated in a 9-week online intervention based on the cognitive behavioral therapy model. Outcomes of the intervention were measured by the Chinese version of the Neuropsychiatric Inventory Questionnaire and two domains of the Revised Scale for Caregiving Self-Efficacy. Wilcoxon signed rank tests were used to compare the change in outcome variables.Results: The severity of BPSD of PWD and BPSD-related distress in family caregivers showed a statistically significant reduction after the intervention. Subgroup analysis showed self-efficacy in controlling upsetting thoughts significantly improved in caregivers of PWD at moderate to severe stages.Conclusion: Online cognitive behavioral therapy for family caregivers reduced BPSD of PWD and the related distress in their caregivers.Keywords: online intervention, dementia caregiver, emotional self-efficacy, BPSD
Arriaga, Patrícia; Pacheco, Catarina
This study investigated the effects of hospital Clown Doctors intervention on child and caregiver preoperative anxiety at the entrance to the surgery care unit and separation from caregivers. A total of 88 children (aged 4-12 years) were assigned to one of the following two groups: Clown Doctors intervention or control group (standard care).…
Katz-Saltzman, Shiri; Biegel, David E.; Townsend, Aloen
This cross-sectional study utilized a stress-process model to examine the impact of caregivers' (N = 82) perceptions of their relationship quality with a female family member (i.e., care-recipient) with substance-use or co-occurring substance and mental disorders on caregivers' perceived burden. Regression findings indicate that relationship…
Pagani, M; Giovannetti, A M; Covelli, V; Sattin, D; Leonardi, M
Involvement of family members is crucial to provide daily informal caring to patients in vegetative state and minimally conscious state. Previous studies showed that perceived burden is a risk factor for informal caregivers as it increases psychophysical distress. This research further investigated the relationship between these factors and aimed at providing a model that thoroughly describes this mechanism of functioning. In the frame of a national survey on people with disorders of consciousness, 487 informal caregivers of children and adult patients in vegetative and minimally conscious state were administered measures of depression, anxiety, caregiver needs, and family strain. Regression models proposed by Baron and Kenny and the Sobel test were adopted to investigate the relationship between depressive and anxiety symptoms, perceived burden and needs expressed. Our study shows that the relation between those symptoms and needs is mediated by burden, where higher burden accentuates and lower burden mitigates the needs expressed by caregivers. Our findings demonstrate that psychosocial components of the burden perceived by caregivers of patients with disorders of consciousness play a key role in shaping those caregivers' needs, especially their needs for information and communication. We recommend implementation of comprehensive steps to meet the needs of these caregivers, steps that incorporate improved economic and public health programs, social support, and use of psychological interventions to ameliorate caregivers' psychological distress and decrease their burden. PMID:24913784
Full Text Available Context: The purpose of this research was to study family life of caregivers who provide primary care to children with Cerebral Palsy. Aim: To study the family activities, leisure and interaction of caregivers of children with Cerebral Palsy. Settings and Design: Study was conducted in Dept. of Physical Medicine and Rehabilitation, AIIMS, New Delhi. Methods and Material: Study sample consisted of 65 primary caregivers of children with Cerebral Palsy. Questionnaires about family activities, leisure and interaction from Family burden interview schedule were used. Descriptive statistics and multiple regressions were used for data analysis. Results: All three domains i.e. disruption of routine family activities, family leisure and family interaction were found to be disrupted in caregivers of children with Cerebral Palsy. Various factors like education of caregiver, total children, family income, duration of caregiving, speech disturbance in child, seizures and mental retardation were found to effect scores of disruption of family activities, leisure and interaction. Conclusions: Caregivers of children with Cerebral palsy experience disruption of family activities, leisure and interaction. For proper care of children caregiver’s family life should be taken care of. Healthcare providers should enhance support networks to encourage and promote normal family activities, leisure and interactions of caregivers.
Kliewer, Wendy; Cunningham, Jera Nelson; Diehl, Robyn; Parrish, Katie Adams; Walker, Jean M.; Atiyeh, Cynthia; Neace, Brooke; Duncan, Larissa; Taylor, Kelli; Mejia, Roberto
This short-term, longitudinal interview study used an ecological framework to explore protective factors within the child, the caregiver, the caregiver?child relationship, and the community that might moderate relations between community violence exposure and subsequent internalizing and externalizing adjustment problems and the different patterns…
Kenneth Ayuurebobi Ae-Ngibise
Full Text Available Background: Families and friends who give care to people with mental disorders (MDs are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden. Objective: The burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed. Design: A qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs. Results: Caregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered. Conclusions: Emotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons
Røthing, Merete; Malterud, Kirsti; Frich, Jan C.
various coping strategies, adjusted to the stage and progression ofHD. They tried to regulate information about the disease, balancingconsiderations for protection and disclosure, within and outside thefamily. The participants made efforts to maintain a balance between theirown needs in everyday life and...... the need for care for affected familymember(s). As the disease progressed, the balance was skewed, and thefamily caregivers’ participation in social activities gradually decreased,resulting in experiences of isolation and frustration. In later stages of thedisease, the need for care gradually...... overshadowed the caregivers’ ownactivities, and they put their own life on hold. Health professionals andsocial workers should acknowledge that family caregivers balance theirneeds and considerations in coping with HD. They should, therefore,tailor healthcare services and social support to family caregivers...
Warren, Christopher M; Otto, Alana K; Walkner, Madeline M; Gupta, Ruchi S
Food allergy is increasing in prevalence worldwide. This review summarizes progress made studying relationships between food allergy and quality of life (QOL), with an emphasis on recent work in the field. Early work examining QOL among food allergy patients established that stress and anxiety associated with continuous allergen avoidance and the looming threat of anaphylaxis were associated with significantly impaired food allergy quality of life (FAQOL) for children with food allergy and their caregivers. Recent clinical studies suggest that undergoing oral food challenge to confirm food allergy and oral immunotherapy to treat food allergy may each improve FAQOL among both patients and their caregivers. Other intervention modalities, such as nurse-facilitated counseling and educational workshops, also hold promise, but additional work is needed. Future work must strive to recruit more representative, population-based samples, including adult patients, in order to improve the generalizability and clinical relevance of findings. PMID:27048239
Lashewicz, Bonnie; Manning, Gerald; Hall, Margaret; Keating, Norah
Although family scholars conceptualize caregiving in terms of networks of carers, little attention has been given to equity within these groups. Siblings comprise a prevalent caregiving network of members who feel responsible for parent care, expect to share these responsibilities with each other, and look to each other to evaluate the fairness of their sharing. In this paper, a multidisciplinary approach is used to examine sibling views of equity in relation to disputes over giving parent care and receiving parent assets. A literary perspective is offered through analysis of stepsibling tensions depicted in the novel Family Matters. Real life disputes among biological siblings that have been pursued through the courts are also examined. Issues arising from these examples are then analysed through the lens of legal doctrines of equity. Siblings evaluating fairness undertake careful comparisons of their respective relationships with parents in terms of biological links to parents and type and extent of influence in interactions with parents. PMID:18089528
Monin, Joan K.; Schulz, Richard
Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, we first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers’ emotional experiences. Drawing from past theory and research, we propose ...
Storer, Heather L.; Barkan, Susan E.; Stenhouse, Linnea L.; Eichenlaub, Caroline; Mallillin, Anastasia; Haggerty, Kevin P.
Placement instability is an ongoing challenge for the 125,000 foster youth aged 14 – 18 that are living in foster care, with youth living in approximately 3 placements before aging out of the system. Despite the importance caring adult relationships can play in promoting positive youth development and resiliency, there has been limited inquiry into the characteristics of the foster youth and caregiver relationship. The goal of this paper is to provide a descriptive account of the foster youth...
This paper examines the personality correlates of behavioral dependency and morale among 114 elderly care recipients. The research draws on a trait personality and person-environment perspective in order to understand factors which influence dependency in home and institutional environments. Subjects completed standardized scales of trait dependency, affiliation, and respect for authority. Measures of stoicism, caregiver affiliation, and respect for medical authority, which were specially des...
Johnson Frankenberg, Sofia
This thesis explores caregiving ideology and social interaction in Tanzanian families with a focus on guidance and control of young children. The study is set within a context of social change in terms of urbanization as well as the implementation of the Convention on the Rights of the Child. The aim of the study was to explore how the conditions for children’s participation are shaped within local deology and situated practice. A qualitative study was undertaken inspired by the traditions of...
Basso, Umberto; Brunello, Antonella; Magro, Cristina; Favaretto, Adolfo; Monfardini, Silvio
The essential role of the caregiver in the management of elderly cancer patients is still poorly documented. This case report concerns a woman with metastatic lung carcinoma who was sincerely informed and successfully treated with chemotherapy and gefitinib only after gaining the trust of her overprotective daughter. Devoting time to the relatives represents a key element to create a communicative and efficient relationship with older cancer patients. PMID:17036533
Senra, Margarida; Saraiva, Horácio; Pinheira, Vítor
INTRODUCTION: Sexuality in the elderly still remains a taboo, especially in the institutional context. Demographic changes have been occurring these past few years which led to an increase in the number of institutionalized elders, as an attempt to respond their needs. OBJECTIVES: This study aims to know the levels of knowledge and attitudes of the professional caregivers, how these are related and how these relate with the socio demographic variables. METHODS: Quantitative, ...
Alaki, Sumer M.; Bakry, Niveen S.
Purpose. Description of pain is generally difficult in children, and more so in those with intellectual disabilities (ID). Aim. This study is aimed at evaluating dental pain from caregivers' perspective in children with ID. Methods. The study sampled 86 children (33 with ID, 53 normally developing) ages ranges from birth to 16 years old among those visiting the School of Dentistry, King Abdulaziz University, Saudi Arabia. Caregivers were asked about their awareness of dental pain in their wards using the Dental Discomfort Questionnaire (DDQ+). The children were examined for dental caries and periodontal status. Results. The mean DDQ+ in children with ID (4.55 ± 3.46) was not significantly different from that in healthy children (4.19 ± 3.26, P = 0.7). Children with ID had more salivation (P = 0.01) and were putting their hands inside their mouths more often (P = 0.003). Conclusions. Caregivers can recognize dental pain-related behaviors in children with ID such as excessive salivation and putting hands inside the mouth more often. PMID:22927854
Matthews, Judith T.; Lingler, Jennifer H.; Campbell, Grace B.; Hunsaker, Amanda E.; Hu, Lu; Pires, Bernardo R.; Hebert, Martial; Schulz, Richard
Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers. PMID:26288888
Rogero-García, Jesús; García-Sainz, Cristina
This paper aims to (1) determine the rate of (full- and part-time) caregiver leave-taking in Spain, (2) identify the reasons conducive to a more intense use of this resource, and (3) ascertain the main obstacles to its use, as perceived by caregivers. All 896 people covered by the sample were engaging in paid work and had cared for dependent adults in the last 12 years. This resource, in particular the full-time alternative, was found to be a minority option. The data showed that legal, work-related, and family and gender norm issues are the four types of factors that determine the decision to take such leaves. The most significant obstacles to their use are the forfeiture of income and the risk of losing one's job. Our results suggest that income replacement during a leave would increase the take-up of these resources. Moreover, enlargement of public care services would promote the use of leave as a free choice of caregivers. PMID:26808617
Judith T. Matthews
Full Text Available Health care providers typically rely on family caregivers (CG of persons with dementia (PWD to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86 who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.
Tsai, T-C; Liu, S-I; Tsai, J-D; Chou, L-H
The study was designed to explore the psychosocial effects on caretakers of children in Taiwan on chronic peritoneal dialysis (CPD). This is a case-control study, performed with subjects drawn from eight medical centers. The study group consisted of caretakers of 32 children with renal failure being treated with CPD. For comparison, a control group of caretakers of 64 healthy children as well as the regional Taiwanese studies were used. Two instruments were used to explore the presence of probable depression and quality of life (QOL) of the caretakers: the Taiwanese Depression Questionnaire, and the World Health Organization QOL BRIEF-Taiwan Version. In the study group, only 25% of caregivers had full-time jobs, and 66% of families had an annual income of less than US dollar 15,000. Of the 32 families in the study group, 16% had only a single parent. The prevalence of probable depression was significantly more common in the study group compared with control and referent group (28% vs 5% and 9.44%; P = 0.001). QOL scores in four domains were also significantly lower in the study group. In conclusion, even with the advances of peritoneal dialysis techniques, caring for children on CPD in Taiwan has significant adverse psychosocial effects on the primary caregivers. Attention should be paid to the psycho-social status of the caregivers. PMID:16985519
Kim, Suk-Sun; Oh, Kyeung Mi; Richards, Kathy
The purpose of this secondary analysis study was to determine whether care recipients' nighttime sleep patterns, medical comorbidity, observed nocturnal agitation behaviors, and caregivers' perceptions of nocturnal agitation behaviors in care recipients with dementia are associated with caregiver burden. Sixty care recipient-caregiver dyads, comprising older adults with geriatrician-diagnosed dementia living at home with caregivers, participated. Caregivers' perceptions of the frequency of care recipients' nocturnal agitation behaviors were associated with caregiver burden; however, objective, real-time data on the frequency of nocturnal agitation behaviors were not associated with burden. Care recipients' increased minutes of wakefulness before falling asleep and severe cognitive impairment with musculoskeletal/integument and neurological comorbidities were associated with higher caregiver burden. These results suggest that targeted interventions to reduce sleep onset latency, medical comorbidity, and caregivers' perception of frequency of nocturnal behaviors may reduce caregiver burden. PMID:24877599
Sakka, Mariko; Sato, Iori; Ikeda, Mari; Hashizume, Hirofumi; Uemori, Masayo; Kamibeppu, Kiyoko
We examined the differences in family-to-work spillover between employed women who did and did not have caregiving responsibilities for elderly parents and the relationship between family-to-work spillover and negative and positive appraisals of caregiving using moderation analysis. A cross-sectional survey was conducted with middle-aged employed women (age ≥40 years) from four large companies. Negative and positive family-to-work spillover (FWNS and FWPS, respectively) and negative and positive appraisals of caregiving were measured. Data from 386 non-caregivers and 82 caregivers were analyzed using Fisher's exact tests, Welch's t-tests, and hierarchical multiple regression. Results showed that FWNS was higher in caregivers than in non-caregivers, while there was no significant difference in FWPS. Caregiver "fulfillment from the caregiving role" (a subscale of positive appraisal) buffered the effects of caregiver "feelings of social restriction" (a subscale of negative appraisal) on FWNS. On the other hand, caregiver "commitment to caregiving tasks" (another positive subscale) intensified the effects of "feelings of social restriction" on FWNS. However, there was no relationship between negative and positive appraisals of caregiving and FWPS. These findings suggest that both negative and positive appraisals of caregiving are important contributors to FWNS among employed women caring for their parents. PMID:26829970
Jennifer R. Day
Full Text Available Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue.
Nielsen, Mette Kjaergaard; Neergaard, Mette Asbjoern; Jensen, Anders Bonde;
PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings....... Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients. METHOD: We...... conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socio-economic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress...
Doser, Karoline; Norup, Anne
more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden. CONCLUSIONS: The findings emphasized the continuing consequences of brain injury on......OBJECTIVE: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses. METHODS: Forty-four Danish...... caregivers of patients with severe brain injury were contacted 3-6 years post-injury and asked to complete a measure of caregiver burden. RESULTS: Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients with...
Small, Eusebius; Kohl, Patricia L
Despite the strong correlation between caregiver substance abuse and child maltreatment, little information exists to understand the typology of African American caregivers with substance abuse problems in the child welfare system. Research shows African American caregivers contend with multiple problems stemming from substance abuse. Unfortunately, we do not yet know how to best tailor resources to be responsive to varying groups of African American caregivers. Using data from the National Survey of Child and Adolescent Well-being (NSCAW), this investigation tested for distinct multivariate profiles among a subset of African American caregivers with substance abuse problems (n=258). Latent Class Analysis (LCA) was used to classify caregivers, and five classes were identified among this high risk sample - each with distinct risk profiles. Based on these findings, we discuss implications for tailored practices to enhance the safety and stability of children involved with child welfare. PMID:22962521
Spring, Heather J; Rowe, Meredeth A; Kelly, Annette
This article reports the qualitative arm of a mixed-methods study designed to test an in-home nighttime monitoring system (NMS) that tracks the nighttime activity of persons with dementia. Fourteen caregiver interviews were analyzed using grounded theory/full conceptual description methods to determine the issues associated with providing care at night and to explore the benefits of using the NMS. Caregivers not using the NMS experienced sleep disruption, overwhelming worry, and loss of personal space, leading to decreased energy and changes in mood. When the NMS was used, caregivers reported improved "peace of mind." The fear and uncertainty associated with worry was alleviated by reliable alerts regarding the whereabouts of the person with dementia. Some caregivers were able to better balance needs for personal space with needs to remain in contact with the person with dementia. Generally, caregivers reported improved quality of sleep, although some caregivers reported more awakenings due to the system alerts. PMID:20077992
Kuljeet Singh Anand; Vikas Dhikav; Ankur Sachdeva; Pinki Mishra
Objectives: Cross sectional studies have reported a tremendous amount of stress in caregivers of patients with Alzheimer′s disease (AD) and Mild Cognitive Impairment (MCI). The present study aimed at evaluating the perceived stress in caregivers of patients with AD and MCI compared to controls. Materials and Methods: Caregivers of patients diagnosed with Alzheimer′s disease/Mild Cognitive Impairment were recruited at the Memory Clinic of Neurology Department of a Tertiary Care Hospital in Nor...
Previous studies document positive and negative effects of informal caregiving on the caregiver’s physical and mental health. Although injuries are highly prevalent in professional home care workers, they have not been fully examined in informal caregivers. This study has explored physical pain and injuries in informal caregivers to frail older adults using the grounded theory approach and symbolic interactionism theoretical background. In-depth interviews have been conducted with twenty prim...
Full Text Available Background: "Caregiver Burden" is actually an expression addressing the adverse consequences of the care provided to the patients′ with dementia. Review of the previous studies reveals a higher rate of depression and anxiety among the caregivers as compared to the general population. This study has been designed to evaluate the caregiver burden and then the factors influencing it among caregivers of patients with dementia in Iran. Methods: In this cross-sectional study, 153 patients and their caregivers registered in the Memory Clinic in Roozbeh Hospital and Iranian Alzheimer Association (IAA were included. Data collection scales were Iranian Version of Caregiver Burden, Global Deterioration scale and Barthel index. Multiple linear regression model was applied to determine the factors influencing the caregiver burden. Results: Out of the 153 patients, 90 were male. The mean age calculated for the patients and the caregivers was 77.1 and 53, respectively. The mean of caregiver burden was 55.2. Three variables, gender (P<0.01, education of the patient (P<0.005 for illiterate patients, and the patient′s dependence on the caregiver for his/her daily tasks (P<0.000 were correlated with a high level of burden on the caregiver. The recommended model explains 0.664% of the variance of the outcome variable. Conclusion: Presence of either moderate or higher levels of burden (58-116 in more than 50% of the caregivers of these patients′ highlights the need for more attention from health policy makers in Iran. Promoting the level of caregivers′ quality of life along with enabling the patients in performing their daily tasks in order to reduce the imposed burden on caregivers′ is recommended.
Leslie Foster; Randall Brown; Barbara Phillips; Barbara Lepidus Carlson
This report estimates the effects of Cash and Counseling on caregivers who were providing the most unpaid assistance to adult beneficiaries at the time beneficiaries volunteered for the demonstration. Despite variations in design and implementation across states, all three demonstration programs positively affected the well-being of caregivers. On average, caregivers of treatment group members were less likely than their control group counterparts to report high levels of physical and financi...
Whitebird, Robin R; Kreitzer, Mary Jo; Lewis, Beth A.; Hanson, Leah R.; Crain, A Lauren; Enstad, Chris J; Mehta, Adele
Caregivers for a family member with dementia experience chronic long-term stress that may benefit from new complementary therapies such as mindfulness-based stress reduction. Little is known however, about the challenges of recruiting and retaining family caregivers to research on mind-body based complementary therapies. Our pilot study is the first of its kind to successfully recruit caregivers for a family member with dementia to a randomized controlled pilot study of mindfulness-based stre...
Flyckt, Lena; Fatouros-Bergman, Helena; Koernig, Thomas
Background: In a previous study, the objective burden of informal caregiving to patients with psychotic disorders amounted to 22 hours/week, and the subjective burden was huge with predominately anxiety and depression as main symptoms. In this study, determinants of the informal caregiving burden are analyzed to find foci for interventions to ease the size of burden. Methods: Patients with psychotic disorders (n = 107) and their informal caregivers (n = 118) were included. They were assessed ...
Hai-Ping Ma; Hui-Juan Lu; Xiao-Yun Xiong; Jian-Ying Yao; Zhen Yang
Purpose: The level of care burden experienced by caregivers of patients with spinal cord injury and their coping style were evaluated in order to identify ways to improve their capacity to respond and reduce the care burden. Methods: A convenience sampling method was used to select 150 spinal cord injury patients who were discharged from the Second and the Third Affiliated Hospital of Nanchang University and their primary caregivers. The Chinese version of the Zarit Caregiver Burden Interv...
Full Text Available Abstract Background Amyotrophic Lateral Sclerosis (ALS is a rare, fatal neurodegenerative disorder with no curative treatment characterized by degeneration of motor neurons involving a progressive impairment of motor and respiratory functions. Most patients die of ventilator respiratory failure. Caregivers have a great influence on the patient”s quality of life as well as on the quality of care. Home influence of the caregiver on patient care is notable. To date, no study has investigated how psychological issues of caregivers would influence respiratory variables of ALS patients. The study aimed at finding out if there is a relationship between the respiratory function of ALS patients and the level of distress of their caregivers. Methods A cross-sectional study was conducted to investigate respiratory issues (PCF and FVC and the perception of social support of ALS patients. Caregivers filled questionnaires about trait anxiety, depression, and burden of care. Forty ALS patients and their caregivers were recruited. Results FVC and PCF were positively related to patient perception of social support and negatively related to caregiver anxiety, depression, and burden. Discussion The distress of ALS caregivers is related to patient respiratory issues. The first and more intuitive explanation emphasizes the impact that the patient’s clinical condition has with respect to the caregiver. However, it is possible to hypothesize that if caregivers feel psychologically better, their patient’s quality of life improves and that a condition of greater well-being and relaxation could also increase ventilatory capacity. Furthermore, care management could be carried out more easily by caregivers who pay more attention to the patient's respiratory needs. Conclusion Patient perception of social support and caregiver distress are related to respiratory issues in ALS.
Mary Meck Higgins; Murray, Bethany J.
Despite growing numbers, the nutrition practices and attitudes of skipped‑generation(s) kinship caregivers regarding feeding the dependent children in their care have not been examined. In this qualitative study, transcriptions of semi-structured interviews with 19 female and four male skipped-generation(s) Kansas caregivers (ages 47 to 80, 92% non-Hispanic whites, 83% female, 78% grandparents and 22% great-aunt or great‑grandparent caregivers; caring for a range of one to four children, ages...
Haines, J; Spadaro, K. C.; Choi, J.; Hoffman, L. A.; Blazeck, A. M.
Background: Caregivers are a vital resource in the care of transplant candidates or recipients. However, few strategies have been tested that attempt to decrease the stress and anxiety they commonly encounter. Objective: To test the feasibility of using mindfulness-based stress reduction (MBSR) techniques to decrease stress and anxiety in caregivers of lung transplant candidates/recipients who required admission to an acute care facility. Methods: 30 caregivers of lung transplant candidates/r...
Zhang, Amy Y.; Zyzanski, Stephen J.; Siminoff, Laura A.
This study examined the differences of opinion between cancer patients and caregivers with regard to treatment and care decisions. 184 advanced lung cancer patients and 171 primary caregivers were recruited as a convenience sample from clinics in Cleveland, Ohio. A telephone interview was conducted to collect data using a semi-structured questionnaire. Nonparametric tests and regression analysis were performed. The findings showed that patients and caregivers reported significant disagreement...
Mosher, Catherine E.; Given, Barbara A.; Ostroff, Jamie S.
Although family caregivers of patients with lung and other cancers show high rates of psychological distress, they underuse mental health services. This qualitative study aimed to identify barriers to mental health service use among 21 distressed family caregivers of lung cancer patients. Caregivers had not received mental health services during the patient’s initial months of care at a comprehensive cancer centre in New York City. Thematic analysis of interview data was framed by Andersen’s ...
Individuals who care for family members receiving chronic hemodialysis (HD) are likely to experience burdens that may adversely impact their patients. Effective coping strategies are shaped by various factors, including sociodemographic characteristics. To assess the relationship between caregivers and their patients, we studied 225 family-member caregivers of chronic HD patients through answering the Ways of Coping Questionnaire-Revised. Sociodemographic data, including caregiver age, gender...
Towner, Elizabeth K.; Reiter-Purtill, Jennifer; Boles, Richard E.; Zeller, Meg H.
Understanding the contribution of caregiver feeding practices to adolescent diet and weight is important to refining caregiver roles within the context of adolescent obesity prevention and treatment. This secondary data analysis examined whether feeding practices of female caregivers differentiated persistently non-overweight (n = 29) from persistently obese (n = 47) adolescents. Families who previously participated in a cross-sectional study on correlates of obesity were recruited for this f...
Accurso, Erin C.; Garland, Ann F
This study examined the temporal stability and cross-informant agreement on multiple perspectives of child and caregiver alliance with therapists in usual care psychotherapy. Baseline predictors of alliance were also examined. Children with disruptive behavior problems (n=209) and their caregivers were followed for up to 16 months after initiating psychotherapy at a community-based clinic. Alliance was rated by children, caregivers, and therapists every four months for as long as families par...
Accurso, Erin C.; Garland, Ann F; Haine-Schlagel, Rachel; Brookman-Frazee, Lauren; Baker-Ericzén, Mary J.
This study examined caregiver strain in families who initiated mental health services for their child. Predictors of strain and the bidirectional relation between strain and child symptoms were examined. Participants included 218 children ages 4–13 with disruptive behavior problems and their caregivers, plus 96 psychotherapists, recruited from six publicly-funded clinics. Child disruptive behavior severity and caregiver strain were assessed at baseline, four, and eight months. Multilevel mode...
This study examines the effects of intrapersonal caregiver characteristics on infant/toddler social-emotional outcomes and if these relations are mediated by the level of sensitive and responsive care within the context of center-based child care. Data come from 111 caregivers and 114 children from 41 Early Head Start and community infant/toddler classrooms in California. Path analyses estimated direct and indirect effects of caregiver emotion regulation and internal representations of care a...
Fawley-King, Kya; Haine-Schlagel, Rachel; Trask, Emily V.; Zhang, Jinjin; Garland, Ann F
Caregiver participation in child mental health treatment has been associated with better youth outcomes, but little is known about the amount and type of caregiver participation in usual care services for children. This study examined 1255 caregivers’ reports of their participation in the outpatient services their children received through a large, public mental health system in the Southwest. The majority of the caregivers reported that they participated in their child's services. Extent of ...
Schroth, Robert J; Brothwell, Douglas J.; Moffatt, Michael E. K.
OBJECTIVES: Prevention strategies are integral to improving the oral health for young Aboriginal children. For such to be effective, it is important to understand the social value that parents and caregivers ascribe to primary teeth. The purpose of this paper is to report caregiver knowledge and attitudes toward preschool oral health and early childhood caries (ECC) from 4 communities in Manitoba. STUDY DESIGN: Cross-sectional study, including a retrospective interview with caregivers. METH...
Jennifer M. Stinson, PhD; Robert L. Collins, PhD; Kacey Little Maestas, PhD; Vitor Pacheco, MD; Ashley LeMaire, PhD; Jared Benge, PhD
The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregive...
Lee, Dongwhane; Heo, Sung Hyuk; Yoon, Sung-Sang; Chang, Dae-Il; Lee, Sangeui; Rhee, Hak-Young; Ku, Bon D.; Park, Key-Chung
Background and Purpose We examined the characteristics of sleep disturbances and sleep patterns in the caregivers of patients with amnestic mild cognitive impairment (aMCI) and dementia. Methods We prospectively studied 132 patients (60 with aMCI and 72 with dementia) and their caregivers, and 52 noncaregiver controls. All caregivers and controls completed several sleep questionnaires, including the Pittsburgh Sleep Quality Index (PSQI). The patients were administered neuropsychological tests...
Hermenau, Katharin; Kaltenbach, Elisa; Mkinga, Getrude; Hecker, Tobias
Institutionalized children in low-income countries often face maltreatment and inadequate caregiving. In addition to prior traumatization and other childhood adversities in the family of origin, abuse and neglect in institutional care are linked to various mental health problems. By providing a manualized training workshop for caregivers, we aimed at improving care quality and preventing maltreatment in institutional care. In Study 1, 29 participating caregivers rated feasibility and efficacy...
Bevans, Margaret; Wehrlen, Leslie; Castro, Kathleen; Prince, Patricia; Shelburne, Nonniekaye; Soeken, Karen; Zabora, James; Wallen, Gwenyth R.
The aim of this study was to determine the effect of problem-solving education on self-efficacy and distress in informal caregivers of allogeneic hematopoietic stem cell transplantation patients. Patient/caregiver teams attended three 1-hour problem-solving education sessions to help cope with problems during hematopoietic stem cell transplantation. Primary measures included the Cancer Self-Efficacy Scale–transplant and Brief Symptom Inventory–18. Active caregivers reported improvements in se...
Martín, Josune; Padierna, Angel; van Wijngaarden, Bob; Aguirre, Urko; Anton, Ane; Muñoz, Pedro; Quintana, José M
Background The consequences of caring for a person with a mental illness can impose a substantial burden. Few studies have compared this burden among caregivers of patients with eating disorders and other mental illnesses. The objective of this study was to compare caregiver consequences in eating disorders (ED) with caregiver consequences in depression and schizophrenia, assessed with the same instrument, the Involvement Evaluation Questionnaire (IEQ). Another aim was to identify factors tha...
A. Millings; Walsh, J.; Hepper, E.; O'Brien, M
This cross-sectional, dyadic questionnaire study examined the contribution of romantic attachment and responsive caregiving to parenting style, investigating both gender and partner effects. One hundred and twenty-five couples with children aged 7 to 8 years completed measures of attachment styles, responsive caregiving toward partner, and parenting styles. Structural Equation Modeling was used to examine the intra- and interpersonal associations between romantic attachment, caregiving respon...
Elanur Yιlmaz Karabulutlu
Objective: Cancer is a disease that not only affects the individual′s mental and physical integrity but also affects the functionality of the family system. Caregivers experience stress when patients cannot cope with the symptoms they are experiencing. The stress experienced by caregivers gives rise to psychological and physical symptoms. The purpose of this study is to determine the attitude of coping with stress of family caregivers of cancer patients. Methods: This study was conducted as a...
This article discusses the practice implications of videographic research examining the everyday lived experiences of 5 women family caregivers of older adults with chronic illness. The women's nonverbal expressions and gestures revealed how caregiving is accomplished and lived on a daily basis, in particular through emotion and body management, abnegation, and performance. The findings from this microethnographic study suggest that observing women caregivers' everyday experiences can open new avenues for holistic intervention with this population. Observing nonverbal cues can offer a way for practitioners to better understand women caregivers' realities, to question their practice, and to adapt their interventions accordingly. PMID:24999610
Full Text Available Objectives: The PEAR (pleasant events-activity restriction model has been proposed as a way of understanding leisure effects on dementia caregivers' distress. Considering both the PEAR model and the stress and coping model, the purpose of this study was to analyze the potential of both frequency and satisfaction with leisure to explain caregivers' distress (depression, anxiety and perceived health, risk of institutionalization of the care recipient, caregivers' stressors and resources variables (rumination and cognitive reappraisal in 275 caregivers. Methods: The sample was divided in four groups based on caregivers' scores on frequency and satisfaction with leisure: LFLS = Low frequency + low satisfaction; LFHS = Low frequency and high satisfaction; HFLS = High frequency + low satisfaction; HFHS = High frequency + high satisfaction. Results: Results indicated that while caregivers from the HFHS group showed a generally more positive profile on resources variables, health outcomes and lower levels of risk of institutionalization compared with the other groups, caregivers from the LFLS group used significantly less adaptive emotional regulation strategies and showed worse consequences on health outcomes. Discussion: The results of this study suggest the importance of considering caregivers' profile on frequency and satisfaction with leisure in order to understand caregiving distress.
Qualls, Sara Honn
Long-term care services and supports are primarily a family industry that warrants psychologists' involvement through practice, research, and policy advocacy. Families are poorly integrated into service systems despite the dominance of family caregiving work within health care and long-term care. This article positions family caregiving work within the context of family life across the life span, noting overlaps and distinctions between normal family life and caregiving work for older adults whose physical or cognitive challenges require assistance. The prevalence, work, and consequences of family caregiving for older adults are described. Families are identified as key partners in long-term care, despite substantial policy and practice barriers to integrating them into care structures and systems. Policy options for reducing or eliminating barriers are suggested, as are professional practice opportunities for psychologists to support caregiving families. Approaches to assessment and interventions for caregivers across a variety of settings are described. Gaps in research are highlighted, with a focus on how to understand caregiving as embedded within context of family, long-term care services and supports, and health care. Caregiving work presents an imperative for expanding psychologists' engagement in integrating and supporting the families whose caregiving is so critical to a rapidly aging society. (PsycINFO Database Record PMID:27159435
Full Text Available This paper examines the formal and informal caregiving for elderly in the Malaysian society under the absence of a structured long-term care environment. We surveyed 31 health care providers and 56 informal caregivers for elderly. The private for-profit care providers offer better facilities and services than non-profit centres. Females especially daughters were usually the informal caregivers to the elderly. Caregivers spent below USD$330 on long-term care expenses and relying heavily on public health care services. The results suggest government to implement a comprehensive social insurance for long-term care to ensure protection and equal treatment to be received by elderly.
Mosher, C E; Given, B A; Ostroff, J S
Although family caregivers of patients with lung and other cancers show high rates of psychological distress, they underuse mental health services. This qualitative study aimed to identify barriers to mental health service use among 21 distressed family caregivers of lung cancer patients. Caregivers had not received mental health services during the patient's initial months of care at a comprehensive cancer centre in New York City. Thematic analysis of interview data was framed by Andersen's model of health service use and Corrigan's stigma theory. Results of our analysis expand Andersen's model by providing a description of need variables (e.g. psychiatric symptoms), enabling factors (e.g. finances), and psychosocial factors associated with caregivers' non-use of mental health services. Regarding psychosocial factors, caregivers expressed negative perceptions of mental health professionals and a desire for independent management of emotional concerns. Additionally, caregivers perceived a conflict between mental health service use and the caregiving role (e.g. prioritising the patient's needs). Although caregivers denied stigma associated with service use, their anticipated negative self-perceptions if they were to use services suggest that stigma may have influenced their decision to not seek services. Findings suggest that interventions to improve caregivers' uptake of mental health services should address perceived barriers. PMID:24761985
Jobe-Shields, Lisa; Swiecicki, Carole C; Fritz, Darci R; Stinnette, Jessica S; Hanson, Rochelle F
Caregiver mental health is a known correlate of parenting practices, and recent research indicated that parental depression following childhood sexual abuse disclosure is associated with concurrent parenting difficulties. The present study extended this line of research by investigating posttraumatic stress symptoms and depression in a sample of caregivers (N = 96) of children who experienced sexual abuse recruited from a child advocacy center as well as parenting practices reported by both caregivers and their children (mean age = 10.79 years, SD = 3.29; 79% female). Twenty-four percent of caregivers met criteria for presumptive clinical depression, clinically significant posttraumatic stress, or both. Results indicated elevated caregiver-reported inconsistent parenting in the context of clinically significant distress across symptom groups; children reported particularly elevated inconsistent parenting for caregivers with posttraumatic stress only. Caregiver depression was associated with low self-reported positive parenting and caregiver involvement in addition to self-reported inconsistencies. Directions for future research are offered to further elucidate the relationships between caregiver mental health and parenting practices following childhood sexual abuse. PMID:26808966
Marieke Van Puymbroeck
Full Text Available Family and friends who provide unpaid care to an individual with a disease or disability (known as informal caregivers experience numerous threats to their physical health as a result of providing care. In spite of evidence that participation in physical and leisure activities can be health promoting, informal caregivers have reported diminished or completely absent leisure participation. Hatha yoga has documented therapeutic benefits, including reduced anxiety, as well as improved muscle strength and endurance and flexibility. The purpose of this study was to determine the feasibility of conducting an 8-week yoga program with informal caregivers, and to gather pilot data on the effects of yoga on the physical fitness and coping of informal caregivers. Caregivers were randomized into a yoga intervention (n = 8 or control group (n = 9. The yoga sessions were 2.5 hours/week for 8 weeks and consisted of a variety of pranayama (breathing and asana (postures activities and were led by a certified yoga instructor. Four caregivers (two in each group dropped out of the study. After the conclusion of the 8-week yoga program, lower body strength increased significantly for those in the yoga group and other notable trends occurred in terms of coping, upper body strength and aerobic endurance. Caregivers in the control group experienced an unexpected increase in lower body flexibility. These findings indicate that caregivers in a yoga program may receive some benefits. Future studies are encouraged to test the efficacy of yoga as an intervention for caregivers.
Hall, Nathaniel J; Lord, Kathryn; Arnold, Anne-Marie K; Wynne, Clive D L; Udell, Monique A R
Previous research suggested that 16-week old dog pups, but not wolf pups, show attachment behaviour to a human caregiver. Attachment to a caregiver in dog pups has been demonstrated by differential responding to a caregiver compared to a stranger in the Ainsworth Strange Situation Test. We show here that 3-7 week old wolf pups also show attachment-like behaviour to a human caregiver as measured by preferential proximity seeking, preferential contact, and preferential greeting to a human caregiver over a human stranger in a modified and counterbalanced version of the Ainsworth Strange Situation Test. In addition, our results show that preferential responding to a caregiver over a stranger is only apparent following brief isolation. In initial episodes, wolf pups show no differentiation between the caregiver and the stranger; however, following a 2-min separation, the pups show proximity seeking, more contact, and more greeting to the caregiver than the stranger. These results suggest intensive human socialization of a wolf can lead to attachment--like responding to a human caregiver during the first two months of a wolf pup's life. PMID:25447510
Mahoney, Diane F; LaRose, Sharon; Mahoney, Edward L
Alzheimer's caregiving literature acknowledges dressing as a major daily stressor but research on this topic is negligible. A qualitative grounded theory approach was used to explore Alzheimer's family caregivers' perspectives about issues that arise when their family members lose the ability to dress independently. Three focus groups and seven individual interviews were conducted and audio recorded with 25 information rich caregivers. Constant comparative analyses and coding of the transcripts identified six major themes leading to a 'Preservation of Self Model: Care Recipient to Care Giver' that portrays the caregiving trajectory. Initially, caregivers tried to protect the self dignity of the family member by maintaining usual routines and absorbing blame for difficulties. Dressing 'battles' occurred and caregivers learned management through trial and error. Crossing adult-child-gender role boundaries escalated discomfort. When facing unrelenting demands, concern shifted to preservation of the caregivers' health and self. Results suggest that caregivers would benefit from more pro-active dressing counseling to shorten the trial and error periods, dressing aids more relevant to dementia and more knowledgeable helpers. The preservation model can facilitate understanding of the caregiving trajectory and guide intervention support. PMID:24339112
Rachel Connelly; Jean Kimmel
This paper uses data from the American Time Use Survey to examine the effect of the timing of parents’ daily work schedules on their caregiving time on weekdays. Since the timing of employment is a choice, the decision to work non-standard hours is modeled jointly with caregiving. We find that high-wage non-standard mothers provide more caregiving than lower-wage non-standard mothers, while caregiving time performed by standard-time working mothers is not responsive to their wages. For father...
Jennifer M. Stinson, PhD
Full Text Available The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregivers and Veterans referred for neuropsychological evaluation. Caregivers completed the Zarit Burden Interview (ZBI to assess caregiver burden. Patients completed a battery of neuropsychological tests measuring the domains of attention/processing speed, memory, language, and executive functioning. A principal components analysis of the ZBI revealed a three-factor structure: psychosocial burden, dependency burden, and guilt. Correlations with neuropsychological test performance by Veteran patients suggested that test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains were solely related to the caregiver dependency burden factor of the ZBI. Additional analyses suggested severity of dementia and number of tests in the impaired range further influenced reported caregiver burden. The current study is one of the few studies examining caregiver burden in relation to neuropsychological functioning in a mixed clinical sample and has important implications for clinical practice.
Wang, Jing; Xiao, Lily Dongxia; Li, Xiaomei; De Bellis, Anita; Ullah, Shahid
The aim of this study was to investigate caregiver distress in reacting to the care recipient's behavioral and psychological symptoms of dementia (BPSD) and factors contributing to caregiver distress in the community setting in China. One hundred and fifty-two family caregivers of people with dementia in community settings were assessed using the Chinese version of the Neuropsychiatric Inventory-Questionnaire and the Social Support Rating Scale. The prevalence of BPSD and caregiver distress in reacting to BPSD was higher in China than those reported in high income countries. The most common individual BPSD were apathy/indifference, depression/dysphoria and night-time behaviors. Delusions, hallucinations and apathy/indifference were rated as the most distressing to caregivers. BPSD contributed most to caregiver distress. The high level of caregiver distress identified in this study suggests that dementia services and caregiver support should be established in the public healthcare system to target the needs of people with dementia and their caregivers. PMID:26005192
Singh, Aakanksha; Mattoo, Surendra K; Grover, Sandeep
This study aimed to study stigma experienced by caregivers of patients with schizophrenia. One hundred caregivers of patients with schizophrenia were evaluated on Stigma scale for caregivers of people with mental illness (CPMI), Explanatory model interview catalogue stigma scale (EMIC), General health questionnaire-12 (GHQ), Self-report attitude towards medications questionnaire and Knowledge of mental illness scale (KMI). On CPMI the score was higher for affective component (2.3±0.5) than for cognitive (1.9±0.9) and behavioural (1.8±0.6) components. More than half of caregivers 'agreeing' or 'strongly agreeing' on 20 out of 22 items of CPMI indicated high level of stigma. On EMIC the stigma score was 21.7±6.3. Higher level of affiliate and/or associative stigma was associated with shorter duration of illness and treatment, shorter duration of being in the caregiver role, younger, female and non-earning caregivers, prescription of higher number of pills, caregivers who less often accompany the patient to the hospital and caregivers experienced more psychological morbidity. To conclude this study suggests that caregivers of patients with schizophrenia experience substantial stigma; hospital and community level programs and services are required to reduce and prevent the same. PMID:27232551
Elanur Yιlmaz Karabulutlu
Full Text Available Objective: Cancer is a disease that not only affects the individual′s mental and physical integrity but also affects the functionality of the family system. Caregivers experience stress when patients cannot cope with the symptoms they are experiencing. The stress experienced by caregivers gives rise to psychological and physical symptoms. The purpose of this study is to determine the attitude of coping with stress of family caregivers of cancer patients. Methods: This study was conducted as a descriptive research at the Medical Oncology Clinic. The study sample group comprised of 127 family caregivers. In the collection of the data, the Personel Information Form and Attitude of Coping with Stress Inventory were used. Results: The coping attitude used most frequently by family caregivers was active planning, and the least used coping attitude was avoidance isolation (biochemical. There was no significant statistical difference between the coping attitude depending on the descriptive characteristics of the family caregivers (P > 0.05. Conclusion: Results show that family caregivers of cancer patients tend to choose effective coping methods. However, there were still caregivers that displayed ineffective coping attitudes. Therefore, it is important to support the effective coping attitudes of caregivers and intervene in order to change the ineffective coping attitudes.
Ruth Molina Fuillerat
Full Text Available In January 2005 the Andalusian Health Service Improvement Plan prepared: Caring for the Caregiver include actions to be taken to promote equity, to recognize and facilitate the work of family carers. From our perspective of formal caregivers, it seems necessary to consider not only themselves need care patients with the disease, but also makes it mandatory caring individuals usually relatives, facilitators of the provision of care. In the Unit of Neurology, the daily observation of these family situations, has guided and network relationship between the two formal and informal systems of care, and we have tried the approach of the caregivers as clients to treat them as co-participants the experience of caring. Hypothesis: The Implementation of Functional Plan caregiver positive impact on hospitalization decreased anxiety and improved quality of life of caregivers of a dependent patient. Overall objective: To determine the effect of applying functional caregiver Plan on anxiety and quality of life of family caregivers of dependent people with neurological disorders. Study Design: Experimental study of the clinical trial such an intervention group and a control group randomly assigned.
Philip C Higgins
Full Text Available PURPOSE: End-of-life (EOL measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL scale to include these dimensions of caregiver-perceived quality of EOL care. PATIENTS AND METHODS: Data were derived from Coping with Cancer (CwC, a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads. Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. RESULTS: FACTOR ANALYSIS REVEALED FOUR DISTINCT FACTORS: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52-0.78. 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05 and hospice enrollment (z = -2.09; p≤.05, and negatively associated with bereaved caregiver regret (ρ = -.36, p≤.001 and a diagnosis of Posttraumatic Stress Disorder (z = -2.06; p≤.05. CONCLUSION: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.
Thorpe, Joshua M.; Thorpe, Carolyn T.; Kennelty, Korey A.; Gellad, Walid F.; Schulz, Richard
Background The risk of potentially inappropriate prescription and over-the-counter medication (PIM) use in dementia patients is high. Informal caregivers often facilitate patients’ use of medications, but the effect of caregiver factors on PIM use has not been a focus of prior research. Objective To examine PIM use in dementia patients and caregivers, and identify caregiver risk factors for PIM use in dementia patients. Methods We conducted a secondary data analysis of the baseline wave of the Resources for Enhancing Alzheimer's Caregiver's Health study. The sample was comprised of 566 persons with dementia aged 65 and older and their co-residing family caregiver. PIM was defined using the 2003 Beers criteria and was examined in both dementia patients and their caregivers. Caregiver and patient risk factors included a range of socio-demographic and health variables. Results In dementia patients, 33% were taking at least 1 PIM, and 39% of their caregivers were also taking a PIM. In fully adjusted models, the following caregiver factors were associated with an increased risk of dementia patient PIM use: caregiver's own PIM use; spouse caregivers; Hispanic caregivers; and greater number of years the caregiver has lived in the United States. Increased caregiver age was associated with a decreased risk of PIM use in patients. Conclusions PIM use may be higher in dementia patients and their informal caregivers compared to the general older adult population. Further, patterns of medication use in one member of the dyad may influence PIM risk in the other dyad member. These results suggest that interventions to increase appropriate medication use in dementia patients and their caregivers should target both members of the dyad and target over-the-counter agents along with prescription medications. PMID:22683399
Chandran, Vishnu; Chowta, Nithyananda; Ramapuram, John; Bhaskaran, Unnikrishnan; Achappa, Basavaprabhu; Jose, Hyma
Introduction In India, family caregivers provide bulk of care to People Living With HIV/AIDS (PLWHA). Caregiver burden refers to the physical, emotional and financial hardships associated with providing care to a diseased individual. Attending to the needs of PLWHA can place a significant burden on family members. This may adversely affect their Quality of Life (QOL). Aim The main aim of our study was to assess the caregiver burden and QOL among the family members of PLWHA in Southern India. We also determined the impact of caregiver burden on QOL. Materials and Methods This facility based cross-sectional study was carried out at Kasturba Medical College (KMC) Mangalore. The study was conducted over a period of 18 months starting from October 2013. A total of 360 caregivers participated in our study. The data were collected by face-to-face interview. Caregiver burden was assessed using the Zarit Burden scale & WHOQOL-BREF scale was used to assess the QOL of caregivers. The collected data was entered and analysed using SPSS version 11.5. A p-value of less than 0.05 was considered statistically significant. Results The mean age of caregivers was 36.09± 10.18 years. Most of the caregivers were females 279 (77.5%). Majority of caregivers 184 (51.1%) belonged to Middle/Lower Middle socioeconomic class (Kuppuswamy class III). Majority of PLWHA 155 (43.1%) had Stage 2 disease. Mean CD4 count of the patients was 405.2± 240 cells/μL. In our study 88(24.4%) caregivers had moderate to severe burden and 36(10%) had very severe burden. Physical domain of QOL showed maximum score of 60.28±13.08, while a minimum score of 51.88 ± 14.20 was seen in social domain. With increase in caregiver burden, the mean QOL scores decreased which was statistically significant. Conclusion Our study highlights the need to counsel the caregivers on how to deal with PLWHA in the family. Family care plays a major role in the general wellbeing of PLWHA. Majority of national HIV programmes all
Full Text Available IntroductionAlthough research has shown that many cancer patients report positive life changes following cancer diagnosis, there are few data in the literature related to PTG in caregivers of cancer patients. However, the few studies available have shown that this kind of positive changes can also be experienced by family members. The aims of this study were to explore PTG in caregivers of cancer patients and to investigate correlations between the Posttraumatic growth, psychological status and QoL of caregivers and those of patients, taking into account also clinical and socio-demographic aspects.Methods We enrolled 60 patient/caregiver pairs in the Department of Medical Oncology of the National Research Center ‘Giovanni Paolo II’ in Bari. Both patients and caregivers were assessed using the following scales: Posttraumatic growth Inventory (PTGI; Hospital anxiety and depression scale; Short Form (36 Health Survey (SF-36; ECOG Performance Status. Clinical and socio-demographic data were collected. ResultsCaregivers showed significantly higher scores than patients in the dimension of personal strength. Furthermore, we found a significantly close association between anxiety and depression of caregivers with those of patients. Younger caregivers were better than older ones in terms of physical activity, vitality, mental health, and social activities. Although the degree of relationship with the patient has no significant effect on the dependent variables of the study, it was found that caregivers with a degree of kinship more distant to the patient have less physical pain than the closest relatives.ConclusionResults of the present study show that caregivers of cancer patients may experience post-traumatic growth as the result of their caregiver role. It would be interesting to investigate in future research which factor may mediate the presence of post-traumatic growth.
The evolution of HIV/AIDS care has resulted in a wide range of caregivers who work out of public and private hospital facilities, nongovernmental organizations (NGOs) and community-based facilities. Others are volunteers and community health and social workers based at facilities or community sites. Many caregivers are family members or part of a client's close social network. Additionally, people living with HIV/AIDS (PHA) themselves engage in self-care and provide support to other PHA through support groups. In the best-case scenario the services of these caregivers are sometimes provided free of charge at one site by a specialized NGO. In many cases, however, a person wishing to gain access to care and social services may need an understanding how the systems and procedures of various institutions operate. Many PHA are unprepared for the administrative, financial, and legal barriers that they may encounter. To cope with this need, a new type of support service called the "buddy" system has emerged. Buddies are individuals who are less directly involved with, but who know about HIV/AIDS, the services available and the rights of PHA. A buddy is close enough for the PHA to approach, has sufficient time to devote to him/her and can be asked almost everything. The article on the Rio de Janeiro Buddy Project provides an example of a project for gay men in Brazil. In other parts of the world where the buddy system is non-existent, the PHA must often rely on support provided by family and friends. PMID:12349766
Anjum S Khan Joad
Conclusions: informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.
Rondi, Céline; Berney, Alexandre
The use of social media as a communication tool is rapidly growing in the community, and more specifically in patients, through illness blogs. This has been true for several years in North America, but is becoming a reality in Europe as well. We report here the first results of studies on the putative psychological benefits and risks of illness blogs for their authors. We also explore the possible impact of blogging on the patient-caregiver relationship. Social media are expected to have a growing influence in certain areas of health care. Physicians should therefore stay informed about them, take advantage of their benefits, and anticipate their risks. PMID:24620462
Austin, Ann Marie Berghout; Lindauer, Shelley L. Knudsen; Rodriquez, Ariel; Nortion, Maria L.; Nelson, Farol A. Groutage
Participants included 36 licensed family day care providers from six rural counties who had been providing care for a mean of 8.3 years (SO = 6.8 years). Fourteen of the providers had earned high school diplomas; twenty‐two had some post high school education. At least one child from an economically strained home (as measured by AFDC receipt) was present in 44.4% of the FDC homes. Dependent measures included: The Caregiver Interaction Scale (Arnett, 1989); Elaboration Scale from The Family Da...
Hu, Jung; Lin, Jin-Ding; Yen, Chia-Feng; Loh, Ching-Hui; Hsu, Shang-Wei; Lin, Lan-Ping; Wu, Sheng-Ru
Background: This study provides a perspective on the mental health status and analyses the effectiveness of a stress-relief program for primary caregivers of adolescents with intellectual disability (ID). Method: Seventy-seven primary caregivers of people with ID were recruited (intervention group, n = 31; non-intervention group, n = 46) to the…
Glenn-Applegate, Katherine; Justice, Laura M.; Kaderavek, Joan
Background: Little is known about how parents and other caregivers conceptualize preschool quality, or what factors they prioritize when selecting a preschool. Caregivers of children with disabilities have the additional challenge of finding a preschool that can address their children's special needs. Objective: We explored the factors caregivers…
Walker-Descartes, Ingrid; Sealy, Yvette M.; Laraque, Danielle; Rojas, Mary
Objective: The aim of the study was to examine caregiver management strategies for child sexual abuse (CSA) when presented with hypothetical scenarios that vary in physical invasiveness. Methods: One hundred fifty three caregivers were given 3 scenarios of CSA with 7 management strategies presented in the 21-item Taking Action Strategies (TAS)…
Accurso, Erin C.; Garland, Ann F.
This study examined the temporal stability and cross-informant agreement on multiple perspectives of child and caregiver alliance with therapists in usual care psychotherapy. Baseline predictors of alliance were also examined. Children with disruptive behavior problems (n=209) and their caregivers were followed for up to 16 months after initiating psychotherapy at a community-based clinic. Alliance was rated by children, caregivers, and therapists every four months for as long as families participated in treatment. Repeated-measures analyses using linear mixed models with random intercepts were conducted to determine whether child and caregiver alliance differed across time, as well to examine factors associated with each perspective on alliance. Intraclass correlations (ICCs) between child, caregiver, and therapist reports of alliance were also examined. Alliance was rated relatively high overall across perspectives. Clients (children and caregivers) tended to report the strongest and most stable alliance, while therapists reported the weakest alliance and perceived deteriorations in child alliance over time. Inter-informant agreement was variable for child and caregiver alliance; agreement was moderate between clients and therapists. Several predictors of alliance emerged, including child gender, anxiety diagnosis, caregiver race/ethnicity, and therapist experience. This study provides methodological information about reports of therapeutic alliance across time and informants that can inform current efforts to understand the alliance-outcome association. PMID:25314097
Teri, Linda; Truax, Paula
Primary caregivers (n=41) of memory-impaired patients rated a standardized stimulus of depression and their actual patient. They were able to correctly identify depression in both. Further, their mood was unassociated with video ratings and only moderately associated with patient ratings. The findings support reliance on caregiver input.…
Cipriani, D.J.; Hensen, Fenna; McPeck, D.L.; Kubec, G.L.; Thomas, J.J.
Parents and caregivers faced with the challenges of transferring children with disability are at risk of musculoskeletal injuries and/or emotional stress. The Caregiver Self-Efficacy Scale for Transfers (CSEST) is a 14-item questionnaire that measures self-efficacy for transferring under common cond
Knibbe, Mare; Maeckelberghe, Els; Verkerk, Marian; Weimar, W; Bos, MA; Busschbach, JJ
The family of a child in need of a transplant has a double role. It has a role of patient on the one hand, receiving professional care, and of caregiver on the other hand, sharing responsibility with the medical caregivers. In order to reflect on the complex intertwining of responsibilities connecte
Mitrani, Victoria B.; Lewis, John E.; Feaster, Daniel J.; Czaja, Sara J.; Eisdorfer, Carl; Schulz, Richard; Szapocznik, Jose
Purpose: The purpose of the study was to evaluate the role of family functioning in the stress process in a sample of caregivers of dementia patients by using a structural family framework. The stress-process model of caregiver distress included family functioning as an intervening variable in the relationship between objective burden and…
Belcher, Harolyn M. E.; Watkins, Katara; Johnson, Elizabeth; Ialongo, Nicholas
This study investigates the role of socioeconomic status, parental mental health, and knowledge of child development on parenting styles and perceived parenting stress in caregivers of children, ages 3 months to 3 years, enrolled in Early Head Start (EHS). Caregivers of EHS students were interviewed using the Knowledge of Infant Development…
Vukicevic, M; Heraghty, J; Cummins, R; Gopinath, B; Mitchell, P
PurposeCaregivers of older persons with eye disease, namely age-related macular degeneration (AMD), have been reported to have a higher than expected distress. Very few studies have explored caregiver perceptions as to what is important when providing care. The aim of this study was to explore the perceptions of caregivers of persons with neovascular AMD in relation to the most important aspects of caring, as described in extended answers to self-administered survey questions.MethodsA cross-sectional, self-administered survey of 643 caregivers of people with neovascular AMD, comprising 27 closed-response questions and 2 open ended questions. The latter were analysed as part of this study utilising and 'inductive' Grounded Theory approach.ResultsSix-hundred and forty-three caregiver responses to 2 open ended questions were analysed using an inductive approach and sorted into thematic networks. Three discrete categories arose: The Impact of Caring; Injections and Information and Activities of Daily Living.ConclusionsMost caregivers were family caregivers and were found to be compassionate and self-sacrificing. They accepted additional responsibility whilst providing an encouraging environment for their care recipient. As a result, they experience distress and consider their own needs as secondary. Very few seek or receive respite and this added burden can have a negative impact upon the relationship between caregiver and care recipient. PMID:26611848
Zhan, Heying Jenny
This article uses the life course perspective to combine micro- and macro-levels of analysis of caregiving burdens experienced by Chinese baby-boom cohort and then explores their elder care prospects. Based on survey interviews during 1997 and 1998 with 110 caregivers providing care to dependent parents or parents-in-law, this study finds that…
McCallion, P.; McCarron, M.; Force, L. T.
It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more…
Bezruczko, Nikolaus; Chen, Shu-Pi C.; Gulley, S. Beverly; Maher, Joan M.; Lawton, Cathrine S.
The authors report on the nature of assessing functional caregiving (FC) via three studies, conducted by a university-public preschool collaboration that was designed to measure mothers' confidence to care for children with intellectual disabilities in their homes. Caregiving of children with intellectual disabilities was conceptualized in terms…
van den Heuvel, ETP; de Witte, LP; Schure, LM; Sanderman, R; Meyboom-de Jong, B
Objective: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered. Design and setting: Caregi
Visser-Meily, JMA; Post, MW; Riphagen, [No Value; Lindeman, E
Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reli
Haynes-Maslow, Lindsey; Allicock, Marlyn; Johnson, La-Shell
Improved cancer screening and treatment advances have led to higher cancer survival rates in the United States. However, racial disparities in breast cancer survival persist for African American women who experience lower survival rates than white women. These disparities suggest that unmet needs related to survivorship still exist. This study focuses on the challenges that both African American cancer survivors and caregivers face across the cancer continuum. Five African American focus groups examined cancer survivor and caregiver support needs. Focus groups were recorded, transcribed, and uploaded into Atlas.ti. Thematic content analysis was applied to the text during the coding process. Themes were identified and emphasized based on the research team's integrated and unified final codes. Forty-one African Americans participated in five focus groups: 22 cancer survivors and 19 caregivers. Participants discussed five themes: (1) a culture that discourages the discussion of cancer; (2) lack of support services for African American cancer survivors; (3) lack of support services for cancer caregivers; (4) need for culturally appropriate cancer resources, including resources targeted at African American women; and (5) aspects that were helpful to cancer survivors and caregivers, including connecting with other survivors and caregivers, and having strong social support networks. We gained new insight into the unmet support needs for survivors and caregivers, especially when coping with the cancer experience continuum. While some cancer and caregiver support services exist, our study reveals a great need for services that incorporate the cultural differences that exist across races. PMID:25869580
Meyers, Steven A.; And Others
Current psychological literature suggests that positive representations of self and others are associated with sensitivity of caregiving. This study was designed to examine the relationship among self-perceptions, perceptions of family functioning, and caregiving schemata in 618 undergraduates (437 females, 181 males) enrolled in Introductory…
Gallagher-Thompson, Dolores; Steffen, Ann M.
Randomly assigned depressed family caregivers (n=66) of frail elderly relatives to 20 sessions of cognitive-behavioral (CB) or brief psychodynamic (PD) individual psychotherapy. At posttreatment, 71% of caregivers were no longer clinically depressed, with no differences found between two treatments. Found interaction between treatment modality and…
Bogard, Connie Lynn
As the population continues to become more aged and at risk for chronic illness, there will be a growing need for caregivers. Caregivers to persons with Parkinson's disease (PD) face the challenge of providing care over many years due to the chronic progressive nature of this neurological disorder. The purpose of this study was to understand and…
Dunst, Carl J.; Raab, Melinda; Trivette, Carol M.; Wilson, Linda L.; Hamby, Deborah W.; Parkey, Cindy
Findings from 2 studies of the relationship between response-contingent child behavior and child, caregiver-child, and caregiver behavior not directly associated with child contingency learning are described. The participants were 19 children with significant developmental delays and their mothers in 1 study and 22 children with significant…
Montano, Zorash; Mahrer, Nicole E.; Nager, Alan L.; Claudius, Ilene; Gold, Jeffrey I.
The objective of this study was to examine the level of agreement between child- and caregiver-reports of the child's psychosocial problems presenting to a Pediatric Emergency Department (PED) using a validated screening tool. This was an anonymous, prospective, cross-sectional, multi-informant (child and caregiver) study assessing cognitive,…
Vaughan, Ellen L.; Feinn, Richard; Bernard, Stanley; Brereton, Maria; Kaufman, Joy S.
Children with emotional and behavioral disturbance often have difficulties in multiple symptom domains. This study investigates the relationships between child symptoms and caregiver strain and parenting stress among 177 youth and their caregivers participating in a school-based system of care. Youth were grouped by symptom domain and included…
Benjamin, Nora; Haden, Catherine A.; Wilkerson, Erin
The authors adapted an experimental design to examine effects of instruction prior to entry into a children's museum exhibit on caregiver-child interactions and children's learning. One hundred twenty-one children (mean age = 6.6 years) and their caregivers were randomly assigned to 1 of 5 conditions that varied according to what, if any,…
Postma, M.; Thavorncharoensap, M.; Riewpaiboon, A.; Thinyounyong, W.
Objectives: To estimate the utility scores for diarrheal children aged under 5 years and their caregivers and to identify the influencing factors which affected on these. Methods: Hospitalized diarrheal children aged between 2 months and 5 years and their caregivers at were recruited in this cross-s