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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Full Text Available ... caring for an aging, seriously ill, or disabled family member or friend, we're here to help ... importance of medication management and the role of family caregivers. View more videos 1 2 3 Features ...
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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 ...
... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard and can lead to feelings ...
... term care nationwide, exceeding Medicaid long-term care spending in all states. Evercare Survey of the Economic ... themselves. 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise ...
... heart Lifestyle + Risk Reduction Caregiving What Is Caregiver Burnout? Caregiver burnout is caused by too much long-term stress. ... themselves. They begin to show signs of caregiver burnout. Your healthy body, mind and spirit benefit your ...
... the Diagnosis Early-Stage Caregiving Middle-Stage Caregiving Late-Stage Caregiving Find your local Chapter Zip code: Search by state Get Weekly E-News Stay up-to-date on Alzheimer's treatments and care. First ...
... HealthTopics/ Category/ everyday- healthy- living/ mental- health- and- relationship/ get- support- if- you- are- a- caregiver# the- basics_ 1 So Far Away: Twenty Questions and Answers about Long-Distance Caregiving National Institute on Aging at the National ...
... path forward. Discover ways to survive, post-caregiving. >> FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... our Advanced Search FCA Blog A Complex Web: Family Caregiving and Healthcare [Editor's note: This blog was ...
... 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 ...
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…
Pot, A. M.; Deeg, D. J. H.; van Dyck, R.; Jonker, C.
Examines whether the role of caregiving appraisal explains why stressors in the caregiving situation affect caregivers' psychological distress. Results show that for spouse caregivers, perceived pressure explains the association between their caregiving tasks and psychological distress. Results also show clear mediator effects of perceived…
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 ...
... 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 ...
... communicate with words Your role as caregiver Free e-Learning Course In this two-part program, Living with ... illnesses and their families. To qualify for hospice benefits under Medicare, a physician must diagnosis the person ...
... But during this time, it’s important that caregivers take care of themselves too. PDF Kindle ePub This booklet ... cancer This booklet is not about how to take care of a patient. Instead, it mainly provides ways ...
... 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 ...
... to Know Online Tools Enhancing Daily Life Daily Plan Activities Communication Food & Eating Music & Art Personal Care Incontinence Bathing ... connect and deepen your bond. Learn more: Behaviors Communication Creating a Daily Plan Activities Respite Care Your role as a caregiver ...
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...
Lund, Line; Ross, Lone; Petersen, Morten Aagaard;
BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver...... consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver's relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary...... is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives...
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 ...
... 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...
Fabiola Yonte Huete
Full Text Available Objectives: The main objective is to determine the degree of burden in the main caregivers of dependent patients, to analyse the profile of informal caregivers and dependent patients. Their claims and help received with caring, the influence of mental deteriorate and duration of care giving regarding the burden of caregivers.Methods: Descriptive cross-sectional observational study amongst 50 caregivers and dependents. We used descriptive statistics and correlational studies. Results: 86 % of caregivers were women, middle aged, son/daughter of the dependent, married, with basic studies, no work outside the home, the average time in the role of caregiver was 16,96 hours a day and 2,1 free hours a day. 64 % of them received family support and 68 % wish to receive economic aid. It was found that for 38 % of the caregivers there was no burden at all, 34 % of them had a minimum burden and 28 % a greater burden.Conclusion: There are some caregivers with moderate or great burden. Our caregiver wishes to receive economic help. Our research shows that the decrease of mental health and the years of evolution do not have a significant statistically influence on caregivers. It is necessary prioritize the interventions and its recipients, provide solutions for caregivers with a greater burden, trying to keep away “caregiver syndrome”.
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…
Butler, Sandra S; Turner, Winston; Kaye, Lenard W; Ruffin, Leah; Downey, Roberta
Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.
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 ...
Bruzek, Jennifer L.; Thompson, Rachel H.; Peters, Lindsay C.
Two experiments were conducted to identify the conditions likely to produce resurgence among adult human participants. The preparation was a simulated caregiving context, wherein a recorded infant cry sounded and was terminated contingent upon targeted caregiving responses. Results of Experiment 1 demonstrated resurgence with human participants in…
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…
de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana;
Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...
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
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.
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
... 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
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…
Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…
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...
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.
... of Mental Disorders--Fourth Edition (DSM-IV) of GAF scores in the 21-30 range is the minimum... family member no longer serving as a Primary Family Caregiver. Under section 1720G(a)(3)(A)(ii)(V), VA... explains the formula in paragraph (c)(4)(v),...
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
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
Brackley, M H; Meadows, R F
The relationship between caregiver and elder is a unique one. It cannot be compared to a mother-infant dyad; there is no role reversal. Family caregiving is undertaken out of a sense of filial obligation on the family's part coupled with the needs of the elderly person. The relationship that emerges is based on the dependency of one adult on another and is functional for the family and for society at large. We need families to continue to care for their elderly members at home and families need us to insure their survival. We must constantly be aware that care needs increase over the years, whereas family resources do not. Nursing by its very nature is tied to insuring that families are given the guidance and assistance with which to meet these needs. PMID:2789693
Ratnam, E. Venkata; Sivaramalingam, Sethurajan; Vignesh, A. Sri; Vasanth, Elanthendral; Joans, S. Mary
In the last decade, a variety of robotic/intelligent wheelchairs have been proposed to meet the need in aging society. Their main research topics are autonomous functions such as moving toward some goals while avoiding obstacles, or user-friendly interfaces. Although it is desirable for wheelchair users to go out alone, caregivers often accompany them. Therefore we have to consider not only autonomous functions and user interfaces but also how to reduce caregivers' load and support their activities in a communication aspect. From this point of view, we have proposed a robotic wheelchair moving with a caregiver side by side based on the MATLAB process. In this project we discussing about robotic wheel chair to follow a caregiver by using a microcontroller, Ultrasonic sensor, keypad, Motor drivers to operate robot. Using camera interfaced with the DM6437 (Davinci Code Processor) image is captured. The captured image are then processed by using image processing technique, the processed image are then converted into voltage levels through MAX 232 level converter and given it to the microcontroller unit serially and ultrasonic sensor to detect the obstacle in front of robot. In this robot we have mode selection switch Automatic and Manual control of robot, we use ultrasonic sensor in automatic mode to find obstacle, in Manual mode to use the keypad to operate wheel chair. In the microcontroller unit, c language coding is predefined, according to this coding the robot which connected to it was controlled. Robot which has several motors is activated by using the motor drivers. Motor drivers are nothing but a switch which ON/OFF the motor according to the control given by the microcontroller unit.
de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana;
attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction......Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...
Iosif, Ana-Maria; Sciolla, Andres F; Brahmbhatt, Khyati; Seritan, Andreea L
Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction.
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
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...
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. ...
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 ...
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...
Tellioğlu, Hilda; Hensely-Schinkinger, Susanne; Pinatti De Carvalho, Aparecido Fabiano
This paper is about understanding and conceptualizing the notion of independence in the context of caregiving. Based on the current studies and on our ethnographic and design research in an AAL project (TOPIC) we introduce a model of independence consisting of four dimensions: action, finance, decision, and emotion. These interrelated dimensions are described and discussed in the setting of informal caregiving. Some additional examples are shown to illustrate how to reduce the dependence of informal caregivers before concluding the paper. PMID:26294578
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.
Nijboer, C; Triemstra, M; Sanderman, R; van den Bos, GAM
BACKGROUND. Research regarding informal caregiving showed considerable individual variation in responses to cancer caregiving. The current longitudinal study examined determinants of caregiver outcomes in terms of caregiver experiences at 3 months and caregiver's mental health at 6 months after hosp
Johnson, P D
Caregivers are often referred to as the "hidden patients." Rarely has caregiving research focused on the positive aspects of caregiving. The purpose of this study was to investigate the lived experiences of caregivers of stroke survivors who have been in the caregiver role for at least 6 months poststroke. The conceptual framework was based on a combination of Lazarus' stress and coping theory and Weiner's attribution theory. A qualitative cross-sectional design was employed. It involved a sample of 10 caregivers from a rural county in Wyoming. A total of 24 categories were identified and five themes emerged: (1) a sense of loyalty; (2) acceptance; (3) a sense of "feeling good"; (4) satisfaction is associated with helping others; and (5) burden is associated with lifestyle change. Participants in this study reported several positive outcomes as well as some negative outcomes in regard to their role as caregivers.
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
Mellins, Claude A.; And Others
Caregiving studies often focus on the impaired elder who is the care receiver and the one family member who is perceived as the primary caregiver. Such studies fail to consider all members of the family, whether or not they are involved in providing care. This study was conducted to explore the effects of an elder's health-related dependency on…
Piercy, Kathleen W.; Chapman, Jeffery G.
A qualitative study was done to investigate how adult children become caregivers to older parents with functional impairments and what roles their own children adopt in their family's care arrangement. Interviews revealed five influences on children and grandchildren's adoption of caregiver roles: expectations; family rules; religious training;…
Fuhr, Patti; Martinez, Bethany; Williams, Michael
Persons who are elderly, visually impaired, and primary caregivers for ailing or disabled spouses or significant others are a unique population that has not been studied previously. By definition, "informal caregivers" are family members or friends who provide unpaid day-to-day assistance with activities of daily living and are familiar with the…
Miller, B; Montgomery, A
Constriction of social and personal activities is one of the most frequently noted consequences of caring for a frail elder. This study analyzed the correlates of perceived limitations in social activities using data from a national sample of the frail elderly and their caregivers. Two research issues were addressed: 1) What differences in demographic, family, and caregiving attributes are associated with variation in perceived restricted social activities? and, 2) How does the process influencing restriction of social activities vary by family relationship of the caregiver? Higher levels of elder dependency and task demands were characteristic of those who reported social limitations, and daughters and wives were more likely to report such limitations than sons and husbands. Subjective assessment of time and task demands, however, were more important influences than objective caregiving activities for all family caregivers.
Miller, B; Montgomery, A
Constriction of social and personal activities is one of the most frequently noted consequences of caring for a frail elder. This study analyzed the correlates of perceived limitations in social activities using data from a national sample of the frail elderly and their caregivers. Two research issues were addressed: 1) What differences in demographic, family, and caregiving attributes are associated with variation in perceived restricted social activities? and, 2) How does the process influencing restriction of social activities vary by family relationship of the caregiver? Higher levels of elder dependency and task demands were characteristic of those who reported social limitations, and daughters and wives were more likely to report such limitations than sons and husbands. Subjective assessment of time and task demands, however, were more important influences than objective caregiving activities for all family caregivers. PMID:2180010
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
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
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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Siefert, Mary Lou; Williams, Anna-leila; Dowd, Michael F.; Chappel-Aiken, Lolita; McCorkle, Ruth
The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools. PMID:18772665
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 This integrative review was conducted to describe findings from Thai studies concerning family caregivers for cancer patients. Twenty-three studies that were published from 1994 to 2009 were considered. There were 15 quantitative studies and 8 qualitative studies. The stress and coping model developed by Lazarus and Folkman was the most popular theory that was used to guide the studies. The variables that were explored in the quantitative studies consisted of social support, stress, coping, caregiver burden, quality of life (QOL, and others. The qualitative findings revealed that there were several themes such as the following: the meaning of being family caregivers for cancer patients, the meaning of care, the experiences of caregivers, and the problems and needs of family caregivers in the Thai context. The evidence from the 23 studies reviewed showed that the state of knowledge of cancer caregivers in the Thai context is at an early stage compared with the state of knowledge in Western countries. More research needs to be done to explore the concepts related to negative and positive outcomes of caregiving.
Røthing, Merete; Malterud, Kirsti; Frich, Jan C.
Family members in families with severe chronic disease play importantroles in care-giving. In families affected by Huntington’s disease (HD), caregivers encounter practical and emotional challenges and distress.Enduring caregiver burdens may lead to problems and caregivers are inneed of social...
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
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......). 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...
This study investigated perceptions of 139 familial caregivers of elder adults to answer the question "Is there a significant relationship between appraisal, social distance and the cost of caring for an elder family member?" The cost of caring was analyzed in five dimensions (personal-social restrictions, physical-emotional health, value, care recipient as provocateur and economic cost). Caregivers reported concern for their well-being, feelings of disgust/anger, high social distance and coping by accepting and holding back. Not only were significant relationships found, but caregivers emerged as an at-risk population.
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...
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....
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...
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...
Full Text Available Purpose: Caregivers of patients diagnosed with schizophrenia experience moderate to severe caregiver burden and are at risk for developing mental disorders. This study explores the psychological effects and coping strategies of family caregivers of relatives diagnosed with schizophrenia in the developing world. Methods: This qualitative study used the register of a community mental health clinic at a Jamaican hospital to purposively select and recruit five primary family caregivers of clients diagnosed with schizophrenia (based on the DSM IV. Consenting participants were interviewed using a semi-structured interview guide. Data were analyzed using thematic content analysis. Results: Four of the five caregivers studied were females. Participants were either parents (4 or siblings (1 of the client diagnosed with schizophrenia and aged 42 -57years. Participants experienced feelings of anger, sadness, loss of libido, loss of appetite and depression. They expressed feelings of fear, guilt, stigma and stress related to financial responsibilities in caring for their relatives. Coping mechanisms included social support from family members and their strong faith in God. Conclusion: Participants reported experiencing major psychological distress and ineffective coping. Community based management of individuals with schizophrenia should include strategies to support family caregivers.
Wolff, Jennifer L; Darer, Jonathan D; Larsen, Kevin L
Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.
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
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
Khanna, Rahul; Madhavan, S. Suresh; Smith, Michael J.; Tworek, Cindy; Patrick, Julie H.; Becker-Cottrill, Barbara
The purpose of this study was to test the psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. The CGSQ was originally developed to assess burden experienced by parents of children and adolescents with serious emotional and behavioral disorders. Study data was collected from 304 primary…
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,…
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
Hirakawa, Yoshihisa; Kuzuya, Masafumi; Enoki, Hiromi; Hasegawa, Jun; Iguch, Akihisa
Because dementia is a progressive disease, formal long-term care providers and care managers need information on how the severity of cognitive impairment affects caregiver burden in order to better assist family caregivers. However, research to guide care providers in behavioral symptom-management is not well developed. The purpose of this study was to examine the relationship between dementia status and burden of family caregivers. The subjects were 1875 community-dwelling elderly eligible for public long-term care insurance. The data we used in this analysis included the caregivers' and dependents' characteristics. The main outcome was subjective caregiver burden assessed by the Japanese version of the Zarit Burden Interview (J-ZBI). A total of 1559 pairs of dependents and caregivers were included in the analysis. The pairs were sorted into three mutually exclusive categories: no dementia, mild dementia, and severe dementia. Two hundred sixty-one dependents had severe dementia, and 725 had mild dementia. Although differences were found among the dementia categories in levels of caregiver burden according to the J-ZBI before and after adjusting for these baseline variables, the odds ratios equal nearly 1. The present study shows that severity of dementia is not associated with caregiver burden in Japan. PMID:17767968
Lovell, Brian; Wetherell, Mark A
This review will provide an overview of literature that has linked caregiver stress with development and progression of disease, via interactions between the hypothalamic-pituitary-adrenal (HPA) axis and immune systems. The link between caregiver stress and dysregulation of key physiologic mediators has, in the main, focussed on elderly caregivers of spouses with degenerative illness, i.e., dementia. In these populations, aberrations of both endocrinological and immunologic mediators have been demonstrated. However, as a function of their advancing age, elderly populations experience natural dysregulation of the HPA axis and decline of immunologic efficacy. More recently, research has begun to assess whether caregiver stress exacts a similar physiologic toll on non elderly caregivers, i.e., parents of medically fragile children. Dysregulation of endocrinological and immunologic mediators have been observed in both populations, however, more consistently so in the elderly. The authors suggest that, by considering specific characteristics of the care recipient, i.e., type of impairment, and concomitant changes in the caregiving experience, i.e., caregiving intensity, as well as the role of dyadic support, researchers might be better poised to explain discrepant physiologic findings between elderly and non elderly caregivers and reconcile similar physiologic inconsistencies between different, non elderly populations.
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…
Bakas, Tamilyn; Burgener, Sandy C
Predictors of emotional distress, general health, and stroke-related caregiving outcomes were determined in 104 family caregivers of stroke survivors based on a conceptual model derived from Lazarus' theory of stress and coping. Predictors of emotional distress (R(2) =.48, p <.001) were low caregiver self-esteem, high task difficulty, and high threat appraisal. Predictors of poorer health (R(2) =.25, p <.001) were not living with the patient, low household income, and high threat appraisal. Predictors of poor stroke-related care-giving outcomes (R(2) =.45, p <.001) were emotional distress, low benefit appraisal, high task difficulty, and high threat appraisal. Findings suggest potential areas for multidimensional caregiver interventions.
Camargos, Einstein Francisco; Souza, Andrea Brígida; Nascimento, Aline Silva; Morais-E-Silva, Alessandra Cicari; Quintas, Juliana Lima; Louzada, Luciana Lilian; Medeiros-Souza, Patricia
This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63%) were caregivers of patients with dementia and 115 (37%) were caregivers of patients without dementia. Forty-four caregivers (14.1%) were taking psychotropic drugs (benzodiazepines or antidepressants), and this usage was more frequent among caregivers of patients with dementia (psleeping pills after beginning care, compared with only five (4.3%) caregivers of patients without dementia (p<0.01). In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants) more frequently than the ones of patients without dementia. PMID:22392108
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
Alexandra J. Werntz
Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.
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,...
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.
... 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 ...
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)
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
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
... 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 ...
Riera, Antonio; Ocasio, Agueda; Tiyyagura, Gunjan; Krumeich, Lauren; Ragins, Kyle; Thomas, Anita; Trevino, Sandra; Vaca, Federico E
In this article, we analyze qualitative data from a purposeful sample of limited English proficiency (LEP) asthma health caregivers. We used ethnically concordant, semistructured, in-depth Spanish-language interviews and a follow-up focus group to explore issues related to communication during pediatric asthma encounters in medical settings. Inductive coding of Spanish transcripts by a bilingual research team was performed until thematic saturation was reached. Several key findings emerged. LEP caregivers encountered significant asthma burdens related to emotional stress, observed physical changes, and communication barriers. Language-discordant communication and the use of ad hoc interpreters were common. This finding is complex, and was influenced by perceptions of interpreter availability, delays in care, feelings of mistrust toward others, and individual emotional responses. Language-concordant education and suitable action plans were valued and desired. We discuss a revealing depiction of the LEP caregiver experience with asthma health communication and recommend areas for further inquiry. PMID:25185159
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
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 ...
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...
Wong, Cindy C; Wallhagen, Margaret I
To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD.
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
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.
Stroebe, M.S.; Boerner, K.
The authors reflect on the advancements in the integration of caregiving and bereavement research. They state that they observe increasing evidence of continuity in caregiving and bereavement investigation and integration. They find that the Caregiver Health Effects Study and Resources for Enhancing
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…
Nijboer, C; Triemstra, M; Mulder, M; Sanderman, R; van den Bos, GAM
This study describes patterns of caregiving experiences in partners of patients with cancer (N=148) over a 6-month period. Caregiving experiences were assessed by means of the Caregiver Reaction Assessment Scale (CRA), which consists of four negative dimensions and one positive subscale: Disrupted S
Daire, Andrew P.; Mitcham-Smith, Michelle
Family caregiving for individuals with dementia is an increasingly complex issue that affects the caregivers' and care recipients' physical, mental, and emotional health. This article presents 3 key culturally sensitive caregiver models along with clinical interventions relevant for mental health counseling professionals.
Horowitz, Amy; Goodman, Caryn R.; Reinhardt, Joann P.
Purpose: This study examines the extent and independent correlates of congruence between disabled elders and their caregivers on several aspects of the caregiving experience. Design and Methods: Participants were 117 visually impaired elders and their caregivers. Correlational analyses, kappa statistics, and paired t tests were used to examine the…
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;…
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...
Oldenkamp, Marloes; Wittek, Rafael P M; Hagedoorn, Mariët; Stolk, Ronald P; Smidt, Nynke
BACKGROUND: Informal caregiving is becoming more relevant with current trends such as population ageing. However, little is known about nonconsent and nonresponse bias in caregiving research. We investigated nonconsent and nonresponse bias in a sample of informal caregivers who participated in the L
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…
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
Lazelle E Benefield
Full Text Available Lazelle E Benefield1, Cornelia Beck21College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA; 2Pat & Willard Walker Family Memory Research Center, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USAAbstract: Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1 the elder and the family caregiver(s may reside in the same household; or 2 the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.Keywords: caregiving, family, distance, technology, elders
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...
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.
Chenoweth, Barbara; Spencer, Beth
Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance. (Author)
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…
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).
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.
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
Leblanc, A J; Driscoll, A K; Pearlin, L I
We present a stress process framework as a model for understanding how religiosity may influence the expansion of stress. Survey data from informal caregivers to a spouse with Alzheimer's disease or a related dementia (n = 200) were analyzed to observe the relationships among three variables: (1) care-related stress, (2) religiosity, and (3) depression. This sample, which has a mean age of 73 years, demonstrates high rates of self-described religiosity, church attendance and frequency of prayer. Using these criteria, women and racial/ethnic minority caregivers are the most religious. In a series of multivariate analyses, we found strong evidence to suggest that there is an expansion of care-related stressors leading to depression in this sample. Religiosity, as measured here, appears to be largely unrelated to stress and stress expansion. We found no evidence to suggest that it moderates stress expansion. However, these data do suggest that one stressor--feelings of role overload--is correlated with greater levels of self-perceived religiosity, which among caregivers who have health problems of their own is associated with greater depressive symptomatology. Thus, for a sub-sample of these caregivers, we find weak evidence of a mediation effect wherein one subjective, non-organizational dimension of religiosity is a conduit of the harmful effects of stress (rather than a suppressor). Results and data limitations are discussed in relation to better assessing the role of religiosity and spirituality in the experience of the stress process.
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
El-Mallakh, Peggy; Yates, Brittany Evans; Adkins, Sarah
Diabetes mellitus (DM) is common among those with schizophrenia, but little is known about family members' roles in the care of relatives who have both schizophrenia and DM. The purpose of this descriptive correlational study was to examine DM knowledge and caregiver burden among 27 family caregivers of people with schizophrenia and DM. Findings indicate that DM knowledge was low. Objective caregiver burden was highest for providing assistance with daily living activities. Subjective burden was highest for preventing the care recipient from keeping people awake at night and dealing with the care recipient's non-adherence to DM care. Family caregivers are in need of education and support in the caregiving role.
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
Ostrowski, Madeleine; Mietkiewicz, Marie-Claude
Care for Alzheimers' patients is quite a burden on the caregivers. Guides have been devoted to improve their knowledge about the disease and to help to provide the best care for the patient. A recent study on the reluctance of caregivers'spouses to seek external help, shows that none of 31 spouses had read a caregiver's guide. The aim of this study was to assess if caregiver's guides would help caregivers to deal with sleep/wake disorders. Amongst the 46 French guides, published between 1988 and 2013, thirty three raised the subject of the night sleep with more or less details. In these guides sleep disturbances are considered either as a symptom to be monitored or a natural aging process to be supported. We made a survey of the content of the caregiver's guides, of their goals and why they have been designed to. Then we analyze how the night sleep issue is dealt with in the guides, and eventually we consider the place to be granted to the patient in the management of his/her sleep disturbances.
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
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
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
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.
Ågård, Anne Sophie; Egerod, Ingrid; Tønnesen, Else;
and 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...... 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....
Røhder, Katrine; Trier, Christopher Høier; Brennan, Jessica;
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 to the ch......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...... longitudinal research projects. The poster includes a description of the development of the PCEQ questionnaire, the theoretical background, as well as preliminary data on future mothers and fathers from the WARM study....
Einstein Francisco Camargos
Full Text Available This study evaluated the consumption of psychotropic medications by caregivers of elderly patients with or without dementia. This was a cross-sectional study conducted at all geriatric units in Brasília, Brazil, during a two-month period. Structured interviews were performed with 311 caregivers of people with or without dementia and they completed questionnaires. Among the caregivers, 196 (63% were caregivers of patients with dementia and 115 (37% were caregivers of patients without dementia. Forty-four caregivers (14.1% were taking psychotropic drugs (benzodiazepines or antidepressants, and this usage was more frequent among caregivers of patients with dementia (p<0.01. Twenty-two caregivers of patients with dementia (11.4% had used sleeping pills after beginning care, compared with only five (4.3% caregivers of patients without dementia (p<0.01. In conclusion, this study found that caregivers of patients with dementia took psychotropic drugs (benzodiazepines and antidepressants more frequently than the ones of patients without dementia.
Douglas, Sara L; Mazanec, Polly; Lipson, Amy; Leuchtag, Mary
Distance caregivers (DCGs) are a growing phenomenon in the United States Family members are struggling to provide care to loved ones with chronic illnesses such as cancer, from a distance. Unlike local caregiving research, distance caregiving research is limited and inconsistent definitions of distance make it difficult to compare studies. To date, DCGs have not been afforded the opportunities for educational and emotional support that local caregivers have received from the health care teams. Because they are not usually present at medical appointments, DCGs do not receive first-hand information from the health care team about the patient's condition, disease progression, and/or treatment options. These caregivers report feeling left out of important family discussions. They experience anxiety related to the uncertainty of the family members' well-being and guilt related to not being available to help local caregivers more. The challenges of distance caregiving are especially evident when the distance caregiver has a parent with advanced cancer. Family-centered care, attending to the needs of the whole family regardless of their geographic location is critical for quality cancer care. In this manuscript, the sparse literature on distance caregiving is reviewed. Recommendations for future research and for the development of creative technologically advanced interventions for this underserved caregiving population are suggested.
Maja Lopez Hartmann
Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Full Text Available Background: Schizophrenia not only influences the lives of those affected but also those around them, especially the caregivers. This study examines the different determinants that are likely to contribute to the caregivers′ perception of burden of care across different countries namely Malaysia and India, using the burden assessment schedule. Aim : The goals for this study were, to study the psychosocial and demographic aspects of patients suffering from schizophrenia, to study the levels of perceived burden of the Malaysian and Indian families caring for a relative with schizophrenia, and to study the determinants that contributes to the caregivers′ perception of burden of care. Materials and Methods : The study was conducted in private hospitals, both in Malaysia as well as Mangalore after obtaining the necessary approval. 50 schizophrenia patients and their caregivers in Malaysia and India were chosen using the purposive sampling technique. The inclusion criteria were a minimum of 5 years since diagnosis of schizophrenia. Results: Although the Indian caregivers perceived difficulties in several areas such as finance, family relationship, well-being and health, they still perceived burden to be lesser compared to Malaysian counterpart. Conclusion: Intensified community based care can reduce burden.
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
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
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.
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.
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, ...
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
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...
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...
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
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
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…
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.
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 ...
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.
Hagedoorn, Mariët; Sanderman, Robbert; Buunk, Bram P.; Wobbes, Theo
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 associated with psychological distress in women than in men. Women who feel competent with respect to caregiving may report levels of distress as low as that of male caregivers. DESIGN: This study has a cross-sectional design. METHODS: Psychological distress (CES-D) was measured in 32 female and 36 male partners of patients suffering from various types of cancer. Furthermore, partners' perceptions of caregiving performance and patients' perceptions of partners' supportive and unsupportive behaviour were assessed. RESULTS: Only among female partners were self-efficacy and personal accomplishment regarding caregiving found to be positively linked to distress. Also, in contrast to male partners, female partners reported more distress when they acted less supportively. CONCLUSION: The difference in psychological distress between female and male caregivers seems to be carried by a subgroup of partners who feel that they are not doing a very good job at caregiving.
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
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.
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
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
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…
Harris, Nariman; Badr, Lina Kurdahi; Saab, Raya; Khalidi, Aziza
Medication errors (MEs) are reported to be between 1.5% and 90% depending on many factors, such as type of the institution where data were collected and the method to identify the errors. More significantly, the risk for errors with potential for harm is 3 times higher for children, especially those receiving chemotherapy. Few studies have been published on averting such errors with children and none on how caregivers perceive their role in preventing such errors. The purpose of this study was to evaluate pediatric oncology patient's caregivers' perception of drug administration safety and their willingness to be involved in averting such errors. A cross-sectional design was used to study a nonrandomized sample of 100 caregivers of pediatric oncology patients. Ninety-six of the caregivers surveyed were well informed about the medications their children receive and were ready to participate in error prevention strategies. However, an underestimation of potential errors uncovered a high level of "trust" for the staff. Caregivers echoed their apprehension for being responsible for potential errors. Caregivers are a valuable resource to intercept medication errors. However, caregivers may be hesitant to actively communicate their fears with health professionals. Interventions that aim at encouraging caregivers to engage in the safety of their children are recommended.
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…
The purpose of this study was to identify caregivers' attitudes regarding amounts and types of foods served to Head Start preschoolers using qualitative methods. Researchers conducted 8 focus groups (4 African American; 4 Hispanic) with 33 African American and 29 Hispanic Head Start caregivers. Mode...
Gómez-Marcos Manuel Á
Full Text Available Abstract Background There are caregivers who see their quality of life (QoL impaired due to the demands of their caregiving tasks, while others manage to adapt and overcome the crises successfully. The influence of the family function in the main caregiver's situation has not been the subject of much evaluation. The aim of this study is to analyse the relationship between the functionality of the family and the QoL of caregivers of dependent relatives. Methods We conducted a cross-sectional study including 153 caregivers. Setting: Two health centers in the city of Salamanca(Spain. Caregiver variables analysed: demographic characteristics, care recipient features; family functionality (Family APGAR-Q and QoL (Ruiz-Baca-Q perceived by the caregiver. Five multiple regressions are performed considering global QoL and each of the four QoL dimensions as dependent variables. The Canonical Correspondence Analysis (CCA was used to study the influence of the family function questionnaire on QoL. Results Family function is the only one of the variables evaluated that presented an association both with global QoL and with each of the four individual dimensions (p Conclusion We find an association between family functionality and the caregiver's QoL. This relation holds for both the global measure of QoL and each of its four individual dimensions.
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
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…
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.
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…
Athay, M. Michele
This study utilized the Satisfaction with Life Scale to investigate the life satisfaction of caregivers for youth receiving mental health services (N = 383). Specifically, this study assessed how caregiver life satisfaction relates to youth symptom severity throughout treatment. Hierarchical linear modeling with a time-varying covariate was used…
Van Pelt, David C.; Milbrandt, Eric B; Qin, Li; Weissfeld, Lisa A.; Rotondi, Armando J.; Schulz, Richard; Chelluri, Lakshmipathi; Angus, Derek C.; Michael R. Pinsky
Rationale: Although caregiver burden is well described in chronic illness, few studies have examined burden among caregivers of survivors of critical illness. In existing studies, it is unclear whether the observed burden is a consequence of critical illness or of preexisting patient illness.
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…
Goodman, Catherine Chase; Pynoos, Jon
Describes telephone network bringing family caregivers of Alzheimer's victims together over telephone in rotating pattern of twosomes. Explains how five caregiving spouses and five adult children were matched and connected over three months. Describes program's 25 telephone-accessed audiotapes that guided networks and provided information on…
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).…
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
Lee, Minhong; Kolomer, Stacey R
The purpose of this study is to identify characteristics that would increase the likelihood that a Korean older adult with dementia being cared for by a family caregiver is at risk of being abused. This analysis was based on a sample of 481 primary family caregivers from the data of Comprehensive Study for the Elderly Welfare Policy in Seoul (2003). Multiple regression analysis was used to examine predictors among the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment, functional ability, caregiver burden, and social support for the degree of elder abuse. The degree of elder abuse was significantly associated with caregiver burden, mental impairment, dependency of daily living of care recipient, and use of formal services. PMID:16611617
Milders, Maarten; Bell, Stephen; Lorimer, Angus; MacEwan, Tom; McBain, Alison
Cognitive stimulation (CS) is a psychological intervention for people with dementia aimed at maintaining cognitive functioning. CS provided by caregivers would allow long-term maintenance without greatly increasing demands on health services, but raises questions concerning treatment fidelity and acceptability, which were investigated in this study. Caregivers of home-living people with dementia were trained to provide CS activities to their relative with dementia. Recordings of intervention sessions and analysis of training manuals suggested adequate delivery of the intervention. Dyads continued with the activities after caregiver training had stopped. In addition, presentation of the activities without supervision from a health care professional had no detrimental effect on well-being in the caregiver or the person with dementia. The majority of caregivers indicated that, even though they experienced some burden from doing the activities with their relative, they themselves had also benefited from the intervention and intended to continue with some of the activities.
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.
Olaitan, Peter Babatunde; Oseni, Ganiyu Oladiran
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. PMID:22279284
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.
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…
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
Full Text Available To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD.We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients' Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers' level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors.A lower level of cognitive function in patients (r = -0.28, p<0.001 and longer hours of caregiving (r = 0.17, p = 0.019 were related to increased caregiver burden. Greater social support (r = -0.23, p<0.001, family function (r = -0.17, p = 0.015 and caregiving experience (r = -0.16, p = 0.012 were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040 and family
von Koch Lena
Full Text Available Abstract Background Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS. Results The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings
Holtslander, Lorraine F
Deaths from cancer will continue to rise with an increasing and aging population. Family caregivers of patients with cancer will face loss, grief, and bereavement as a result. As mandated by cancer and palliative care clinical practice guidelines, support for family caregivers continues through the processes of grief and bereavement to facilitate a positive transition through loss. To provide evidence-based nursing with this population, an analysis of their context of care was undertaken. Key health policies, characteristics of the healthcare delivery system, and the results of research with bereaved palliative caregivers are described. A model of effectiveness, efficiency, and equity is used to examine the situation of bereaved caregivers and to suggest research questions to fill the gaps in what is known about their needs and experience. Bereaved caregivers are at high risk for many distressing symptoms, including depression and sleeplessness, related to a range of complex variables, such as age, gender, social support, resources, and their experiences during caregiving. Current systems of support have not been adequate to meet the needs of this population and very little is known about the caregivers' quality of life, well-being, and health outcomes or how best to provide compassionate and effective nursing care.
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.
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…
Fortinsky, Richard H.; Hathaway, Tania Jo
Interpreted results of needs assessment completed by active caregivers (n=58) and former caregivers (n=57) of relatives with Alzheimer's disease (AD). Results imply need for high-quality educational material throughout caregiving, improved training for health professionals about AD, and role for former caregivers as information resources.…
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…
Hirsh, Jamie L; Stockwell, Fawna; Walker, Diana
The present study replicated and extended the Pelaez et al. (Journal of Applied Behavior Analysis 44:33-40, 2011) study, which examined the reinforcing effects of mothers' contingent imitation of their infants' vocalizations. Three infants aged 7-12 months who could vocalize sounds but not words participated with two caregivers for each infant (i.e., triads). During the intervention phase, the caregivers were asked to immediately imitate all vocalizations emitted by the child for a 3-min period. During the yoked control phase, the caregivers listened to an audio recording from the preceding condition and provided vocalizations non-contingently on the infants' responses. The procedures yielded different results across participants; one infant emitted a higher frequency of vocalizations during the contingent imitation phases over the control phases, and the other two infants showed higher rates of responding during the control phases. However, all infants emitted more imitative return vocalizations during contingent reinforcement conditions compared with the yoked control condition. PMID:27274970
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
Anngela-Cole, Linda; Hilton, Jeanne M
This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.
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
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 ...
Weert, J.C.M. van; Dulmen, A.M. van; Bensing, J.M.
Background: Dementia among nursing home residents is often accompanied by high care dependency and behavioral disturbances, possibly resulting in increased workload, increased stress reactions and decreased job satisfaction. This might result in negative caregiver behaviour. Until now, little is kno
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 retrieved from the Danish Health and Medicines Authority on a weekly basis during 2012. All newly registered patients were requested by letter to pass on an enclosed baseline questionnaire to their closest relative. Responding caregivers bereaved within six months received a follow-up questionnaire six...
... Products For Consumers Home For Consumers Consumer Updates Vaccines for Children: Information for Parents and Caregivers Share Tweet Linkedin ... to a healthy start. "Parents should know that vaccines protect children from many serious illnesses from infectious diseases. The ...
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
in partnerships with healthcare professionals. Our study suggests that building respectful partnerships with family caregivers and facilitating the mutual sharing of knowledge may improve the coordination of care. It is important to establish clarity of roles adjusted to caregivers' individual resources......'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 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 cross...
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
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.
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, ...
Gaugler, Joseph E; Anderson, Keith A; Leach, M S W Corinne R; Smith, Charles D; Schmitt, Frederick A; Mendiondo, Marta
Using a unique measure of unmet need that taps into several dimensions of informal long-term care, the present study included data from 694 informal caregivers of persons suffering from dementia at different times in the caregiving career (e.g., at home, following institutionalization, following the death of the care recipient). Multivariate regression models found that unmet need for either confidante or formal support had key implications for caregivers' emotional distress in each of the care situations. The findings suggest that conceptual models should incorporate unmet need as a viable predictor of caregiving outcomes and that assessment of unmet need may provide guidance in the development of more refined psychosocial and community-based intervention protocols. PMID:15633946
Barr, J K; Johnson, K W; Warshaw, L J
An aging population and extended longevity are increasing the number of older people needing informal and family support. At the same time, women, the traditional caregivers, have entered the work force in record numbers. Consequently, concerns about how to care for dependent family members have become workplace issues. In response to the needs of employees who care for family members, employers have produced an array of policies, benefits, and programs, including flexible work schedules and information and referral services. Although these programs are a valuable complement to community services and government initiatives, relatively few employers have recognized the potential effects of caregiving on absenteeism, productivity, and turnover; even fewer have responded with workplace programs directed to the needs of their caregiving employees. To fill the gap, the government is considering mandating employee benefits, such as leave time for family illness. Community services are increasingly being directed to the needs of older people and their caregivers.
Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay
Telomere length (TL) is an indicator of cellular aging associated with longevity and psychosocial stress. We examine here the relationship between religious involvement and TL in 251 stressed female family caregivers recruited into a 2-site study. Religious involvement, perceived stress, caregiver burden, depressive symptoms, and social support were measured and correlated with TL in whole blood leukocytes. Results indicated a U-shaped relationship between religiosity and TL. Those scoring in the lowest 10% on religiosity tended to have the longest telomeres (5743 bp ± 367 vs. 5595 ± 383, p = 0.069). However, among the 90% of caregivers who were at least somewhat religious, religiosity was significantly and positively related to TL after controlling for covariates (B = 1.74, SE = 0.82, p = 0.034). Whereas nonreligious caregivers have relatively long telomeres, we found a positive relationship between religiosity and TL among those who are at least somewhat religious.
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.
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...
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…
Sinha, Dr Samir K
While it is anticipated that healthcare systems around the world will continue to rely heavily on family members and friends to provide unpaid care especially to meet the needs of our aging population, current assumptions and issues around caregivers need to be challenged and addressed if we are to expect their future support. This paper builds on Williams et al's assertion that many current assumptions and issues around caregivers need to be challenged and addressed if we are to expect their future support. Indeed, with the pool of available caregivers expected to actually shrink in the future, this paper therefore examines four key policy issues in greater depth that we can address to enable individuals to age in place and others to maintain and take on caregiving roles. Through the establishment of policies that support robust and longterm capacity planning; make clear what care recipients and caregivers can expect to receive in the form of government supports; appreciate the increasing diversity that is occurring among those taking on caregiving roles and those requiring care; and recognize the need to invest in strategies that combat social isolation, we may not only improve our future health and well-being but ensure we are also enabled to care for ourselves as we age.
Yeh, Shu-hui; Johnson, Mary Ann; Wang, Shan-Tair
This longitudinal study explored changes in perceived burden among Taiwanese family caregivers (n=77) from nursing home placement of an elder to four months postadmission. Higher burden at placement was related to the level of dependence of the care recipients (p=0.004), or caregiver's poor health (p<0.01). After nursing home placement for four months, global burden decreased (p<0.01) contributed primarily by lessened burden in three sub-scales: lack of family support, impact of schedule and impact of health. Burden scores on caregiver esteem and impact of finances were not decreased after placement. Duration of caregiving was the only demographic factor predicting change in global burden (p<0.001). Changes in impact on finances, and impact on health were, respectively, predicted by the perceived health (p=0.005), and religious preference (p=0.01). These results provide valuable information to healthcare providers for an understanding of the changes of caregiving burden after nursing home placement and the correlates of these changes, which may help devise an appropriate policy for alleviating the caregiver's burden. PMID:12100870
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
Cardoso, Lucilene; Vieira, Mariana Verderoce; Ricci, Maira Aparecida Malagutti; Mazza, Rafael Severio
A systematic literature review was performed regarding the burden on mental health caregivers. The studies were selected from the Virtual Health Library - Biblioteca Virtual de Saúde (BVS), using the keyword caregiver burden. The main criteria for this study were: full-text articles published between 2000 and 2010, in Portuguese, English or Spanish; indexed on the BVS databases; which investigated the burden of mental health caregivers, and had caregivers as the main subject. The analysis was performed considering the following: title, year of publication, objectives, methodological approach, instruments and main results. The analysis of 114 full-text articles showed the predominant objectives were the burden on informal caregivers and the validation of psychometric scales, particularly the Zarit Scale. Some studies showed an association between high levels of burden, feelings of guilt and depressive symptoms. On the other hand, psycho-educational interventions were indicated as having a positive impact. This theme has a growing scientific interest and there is a need for deeper studies addressing formal caregivers.
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.
Geurtsen, G.J.; Meijer, R.; Heugten, C.M. van; Martina, J.D.; Geurts, A.C.H.
OBJECTIVE: To examine the psychometric properties (internal consistency, discriminant validity, and responsiveness) of the Involvement Evaluation Questionnaire for Brain Injury measuring emotional burden in caregivers of patients with chronic acquired brain injury. DESIGN: Inception cohort study. SU
van Campen, Cretien; de Boer, Alice H; Iedema, Jurjen
Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.
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...
Hammar Marmstål, Lena
Persons with severe dementia suffer from major cognitive impairment, and are in need of considerable caring services. They commonly react with problematic behaviors, such as resistance and aggression in close care (e.g., morning care situations). Non-pharmacological treatments such as care interventions should be used to enhance mutuality in encounters and minimize problematic behaviors. Music Therapeutic Caregiving (MTC) is one such intervention and involves the caregiver sin...
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. M...... are patients' views of their own impairments, pointing to caregivers' interpretations of their patients' impairments as a primary target for cognitive behavioral interventions.......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....... METHOD: A sample of 968 individuals with ABI and their caregivers (n = 1,936) from 4 countries completed the European Brain Injury Questionnaire, a measure of ABI impairments and caregiver psychosocial functioning in the context of providing care for the person with ABI. RESULTS: An APIM with all...
Christian J. Hendriksz MD
Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.
Gabor, Anne M; Fritz, Jennifer N; Roath, Christopher T; Rothe, Brittany R; Gourley, Denise A
Social validity of behavioral interventions typically is assessed with indirect methods or by determining preferences of the individuals who receive treatment, and direct observation of caregiver preference rarely is described. In this study, preferences of 5 caregivers were determined via a concurrent-chains procedure. Caregivers were neurotypical, and children had been diagnosed with developmental disabilities and engaged in problem behavior maintained by positive reinforcement. Caregivers were taught to implement noncontingent reinforcement (NCR), differential reinforcement of alternative behavior (DRA), and differential reinforcement of other behavior (DRO), and the caregivers selected interventions to implement during sessions with the child after they had demonstrated proficiency in implementing the interventions. Three caregivers preferred DRA, 1 caregiver preferred differential reinforcement procedures, and 1 caregiver did not exhibit a preference. Direct observation of implementation in concurrent-chains procedures may allow the identification of interventions that are implemented with sufficient integrity and preferred by caregivers.
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
Soliman, Hussein H; Almotgly, Manal M Abd
Caring for individuals with AIDS in developing countries represents a major crisis to families and natural caregivers. This study presents the psychosocial profiles of people with AIDS and their caregivers in Egypt to assess the effects of HIV/AIDS on patients, their caregivers, and the factors that influence caregiving and support. Various stressors and challenges for patients as well as hardships the caregiver faces were explored. The literature documents difficulties such as inadequate health care services, lack of resources, and stigma that patients experience in developing countries. Findings indicate an association between the psychosocial effects of AIDS on patients and their caregivers.
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
Roche, Lauren; MacCann, Carolyn; Croot, Karen
An understanding of spousal dementia caregivers' coping strategies and their predictive factors is imperative for caregivers' well-being. Although several reviews have explored the relationship between coping strategies and outcomes, no review has investigated factors that predict caregivers' use of one type of coping strategy over another. The current review aimed to identify factors that predict caregivers' coping strategies. Within this, we attempted to identify caregivers who are more likely to adopt dysfunctional coping strategies and be at risk of adverse outcomes. Several electronic databases were systematically searched. Twenty-one studies were eligible for review, describing 18 caregiver and care-recipient factors related to the 3 coping strategies. No factors were classified "predictive," however, 16 factors were "potentially predictive." Younger, more highly educated caregivers with greater emotional supports and knowledge of dementia were associated with solution-focused coping. Younger, less educated caregivers were associated with emotional support/acceptance-based coping strategies. Whereas nonwhite caregivers with less emotional supports caregiving for persons with more behavioral problems were associated with dysfunctional coping strategies. Enhancing caregiver self-efficacy, knowledge of dementia, improving social supports, linking to support groups, managing behavioral problems, as well as coaching adaptive coping strategies while flagging caregivers at risk for dysfunctional coping may improve outcomes for caregivers. PMID:26485497
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
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.
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
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.
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
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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.
Han, Areum; Radel, Jeff
This qualitative study explored spousal caregiver perspectives on the experience and impact of a person-centered social program for partners with dementia. Interviews with 5 caregivers and the spouses with dementia were conducted 7 to 8 months after the program ended to explore the sustained impact of the program. Interpretative phenomenological analysis was used to support in-depth exploration of interviews. Three themes emerged including benefits of the program for caregivers, initial expectations and later perspectives of caregivers about the program, and conflicting values and perspectives between caregivers and the spouses. These findings suggest participation in a person-centered social program by people with dementia benefits their caregivers, by meeting the caregivers' desire for their spouses to increase social participation and engagement in meaningful activities. Participation in the program provided a sustained benefit to one couple in particular, by encouraging the caregiver to resume arranging activities the couple once enjoyed but now had difficulty pursuing.
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.
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
Røthing, Merete; Malterud, Kirsti; Frich, Jan C
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 participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation. RESULTS: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members......: 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...
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.
Ward-Griffin, C; McKeever, P
Increasing reliance on family care of elderly people at home calls for a critical analysis of the relationship between formal and informal caregivers. Although much has been written about how health professionals and family caregivers should relate to one another, we know very little about the relationships that develop between them. Using data from a qualitative study, this article illustrates that relationships between community nurses and family members caring for frail elders are complex, dynamic, and multifaceted. Shifting boundaries in caring work leads to changes in nurse-family caregiver relationships, which can be categorized as four distinct, yet interconnected, types: (1) nurse-helper, (2) worker-worker, (3) manager-worker, and (4) nurse-patient. Each type is described, and implications for nursing practice and research are discussed.
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
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...
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...
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...
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...
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
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...
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
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
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
This article uses a role theory perspective to examine the social relationships of 74 Latinos, mostly middle-aged and older Puerto Rican and Dominican women, rearing their grandchildren in New York City. Fully 81% of households were below poverty level. Most grandparents had large families and were socially connected, but two thirds of households were skipped-generational and many grandparents lacked reliable help with child rearing. Most relied on a focal secondary caregiver, usually an adult daughter, and extrafamilial supports. These and other sources of strain and support for the grandparent caregiver role in Latino families are discussed, as is the impact of this role on their social relationships. PMID:10028770
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.
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.
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…
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…
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,…
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…
Full Text Available Background/Aims: According to experimental data, a transdermal application is preferred by caregivers of Alzheimer’s disease (AD patients compared with oral medications. The AXEPT study compared compliance to treatment among community-dwelling patients with mild-to-moderate AD treated with transdermal application compared to oral medications and caregiver satisfaction in a real clinical setting. Methods: Data from 45 memory clinics in Italy were collected between September 8, 2010 and January 31, 2011. Compliance to treatment and caregiver satisfaction were measured using the Caregiver Medication Interview. Results: A total of 855 AD patients and their caregivers participated in the study. Nearly 80% of caregivers of patients on patch were not concerned about adherence to treatment compared with 64% of caregivers of patients on oral drugs. Among caregivers of patients on patch, 94% did not report any difficulties in remembering to administer treatment compared with 73% of caregivers of patients on oral medications. The highest level of compliance and satisfaction was reported by caregivers of patients on transdermal application. Conclusion: Caregivers of patients treated with a transdermal application appeared to be more satisfied and reported a higher level of compliance than caregivers of patients receiving anti-AD oral medications.
Corrêa, Márcio Silveira; Giacobbo, Bruno Lima; Vedovelli, Kelem; de Lima, Daiane Borba; Ferrari, Pamela; Argimon, Irani Iracema de Lima; Walz, Julio Cesar
Objectives Older familial caregivers of Alzheimer’s disease patients are subjected to stress-related cognitive and psychophysiological dysfunctions that may affect their quality of life and ability to provide care. Younger caregivers have never been properly evaluated. We hypothesized that they would show qualitatively similar cognitive and psychophysiological alterations to those of older caregivers. Method The cognitive measures of 17 young (31–58 years) and 18 old (63–84 years) caregivers and of 17 young (37–57 years) and 18 old (62–84 years) non-caregiver controls were evaluated together with their salivary cortisol and dehydroepiandrosterone (DHEA) levels, as measured by radioimmunoassays and ELISA assays of brain-derived neurotrophic factor (BDNF) in serum. Results Although younger caregivers had milder impairments in memory and executive functions than older caregivers, their performances fell to the same or lower levels as those of the healthy older controls. Decreases in DHEA and BDNF levels were correlated with the cognitive dysfunctions observed in the older and younger caregivers, respectively. Cortisol at 10PM increased in both caregiver groups. Discussion Younger caregivers were prone to cognitive impairments similar to older caregivers, although the degree and the neuropsychological correlates of the cognitive dysfunctions were somewhat different between the two groups. This work has implications for caregiver and care-recipient health and for research on the neurobiology of stress-related cognitive dysfunctions. PMID:27706235
Morano, Carmen Louis
This study focused on one question: Do caregiver responses--emotion-focused coping, problem-focused coping, appraisal of burden, and appraisal of satisfaction--mediate or moderate the effects of caregiving stress on psychological well-being? Findings indicate that development of interventions that focus on how caregivers appraise their situation,…
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…
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…
Rozario, Philip A.; Chadiha, Letha A.; Proctor, Enola K.; Morrow-Howell, Nancy
This study--on 100 African American wife and 258 daughter primary caregivers--uses a contextual approach in its examination of the relationship between social resources and caregiver depressive symptoms. At the bivariate level, significant differences in certain key characteristics of primary caregivers and care receivers underscore the…
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…
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…
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…
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
Greenberger, Haya; Litwin, Howard
We studied the relationship between caregivers' personal and social resources and facilitation of adherence by elderly care recipients to a prescribed health regimen. Adherence facilitation was measured among 240 caregivers on a 45-item instrument constructed for this research. The facilitation score was regressed on caregivers' role-specific…
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,…
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…
Sanders, Sara; Butcher, Howard K.; Swails, Peggy; Power, James
The purpose of this study was to investigate how caregivers respond to the end stages of dementia with the assistance from hospice. Data were collected from 27 family caregivers over the course of 10 months, with each caregiver being interviewed up to 4 times during the time that the patient received hospice care. Chart review data were also…
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
Full Text Available Background: Many factors impact caregivers' cognitive health and, by extension, their ability to provide care. This study examined the relationship between psychosocial factors and cognitive performance among dementia caregivers and established a virtual cohort of caregivers for future research. Methods: Data on 527 caregivers were collected via a Web-based survey that assessed cognitive performance. Caregiver data were compared to corresponding data from 527 age-, race-, gender-, and education-matched controls from a normative database. Caregiver self-reported sleep, stress, health, and social support were also assessed. Results: Caregivers performed significantly worse than controls on 3 of 5 cognitive subtests. Stress, sleep, perceived support, self-rated health, years of caregiving, race, and gender were significant predictors of cognitive performance. Conclusion: In this sample of dementia caregivers, psychosocial factors interacted in complex ways to impact cognitive performance. Further investigation is needed to better understand how these factors affect cognitive performance among caregivers. This could be accomplished by the establishment of a virtual cohort that facilitates the development of digital tools to support the evaluation and management of caregiver needs in a manner that helps them remain effective in their caregiving roles.
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)
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.…
Nijboer, C; Triemstra, M; van den Bos, GAM; Sanderman, R
fBACKGROUND, The role of social support and personality within the cancer caregiving process has remained a relatively unexplored area. The current longitudinal study examines the main and moderating effects on caregiver experiences and caregiver's depression over time of various social and psycholo
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…
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…
Groeneveld, Marleen G.; Vermeer, Harriet J.; van IJzendoorn, Marinus H.; Linting, Marielle
The current study examined professional caregivers' perceived and physiological stress, and associations with the quality of care they provide. Participants were 55 female caregivers from childcare homes and 46 female caregivers from childcare centers in the Netherlands. In both types of settings, equivalent measures and procedures were used. On…
Nieboer, AP; Schulz, R; Matthews, KA; Scheier, MF; Ormel, J; Lindenberg, SM
In this paper we examine the effects of increasing as well as decreasing caregiving demands on depressive symptomatology. In addition, we focus on spousal caregivers' activity restriction as an explanatory mechanism for changes in depressive symptomatology in the caregiving context. Two databases ar
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…
... 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…
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…
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...
Full Text Available Abstract Background Caring for a person with progressive cancer creates challenges for caregivers. However the needs of caregivers are often not assessed or recognised by health care providers. Research is also lacking in this area, with little knowledge relating to effective strategies to address the specific needs of caregivers. This paper outlines a study protocol aimed at developing and evaluating the effectiveness of a general practice-based intervention to better meet the needs of caregivers of patients with advanced cancer. Methods/Design Two hundred and sixty caregivers will be randomised into each of two arms of the intervention (520 participants in total through patients with advanced cancer attending medical and radiation oncology outpatient clinics at two tertiary hospital sites. Consenting caregivers will be followed up for six months, and telephone surveyed at baseline, 1, 3 and 6 months following their entry into the study or until the patient's death, whichever occurs first. Assessment and management of the unmet needs of caregivers in the intervention arm will be facilitated through a specifically developed general practice-based strategy; caregivers in the control group will receive usual care. Qualitative interviews will be conducted with a sample of up to 20 caregivers and 10 GPs at the conclusion of their participation, to explore their views regarding the usefulness of the intervention. Discussion This study will determine whether systematic assessment of caregiver needs supported by caregiver-specific information for General Practitioners is effective in alleviating the unmet needs experienced by caregivers caring for patients with advanced cancer. Trial registration number ISRCTN: ISRCTN43614355
Full Text Available Recent work in animals suggests that the extent of early tactile stimulation by parents of offspring is an important element in early caregiving. We evaluate the psychometric properties of a new parent-report measure designed to assess frequency of tactile stimulation across multiple caregiving domains in infancy. We describe the full item set of the Parent-Infant Caregiving Touch Scale (PICTS and, using data from a UK longitudinal Child Health and Development Study, the response frequencies and factor structure and whether it was invariant over two time points in early development (5 and 9 weeks. When their infant was 9 weeks old, 838 mothers responded on the PICTS while a stratified subsample of 268 mothers completed PICTS at an earlier 5 week old assessment (229 responded on both occasions. Three PICTS factors were identified reflecting stroking, holding and affective communication. These were moderately to strongly correlated at each of the two time points of interest and were unrelated to, and therefore distinct from, a traditional measure of maternal sensitivity at 7-months. A wholly stable psychometry over 5 and 9-week assessments was not identified which suggests that behavior profiles differ slightly for younger and older infants. Tests of measurement invariance demonstrated that all three factors are characterized by full configural and metric invariance, as well as a moderate degree of evidence of scalar invariance for the stroking factor. We propose the PICTS as a valuable new measure of important aspects of caregiving in infancy.
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…
B P Nirmala
Full Text Available Background: Family′s expressed emotion has been shown to be predictive of outcome in mental and physical illnesses in a variety of cultural settings. The relationship between caregiver burden and high level of expressed emotions has demonstrated a high level of relapse among the psychiatric patients in the West. Aim: The current study explores the relationship between caregivers′ burden and level of expressed emotions by the patients with schizophrenia in Indian setting. Materials and Methods : The sample for the study consisted of totally 70 subjects comprising 35 schizophrenic patients and 35 caregivers. The schizophrenic patients who were attending the Day Care Center run by Department of Psychiatric and Neuro Rehabilitation Unit at National Institute of Mental Health and Neuro Sciences (NIMHANS in Bangalore, India (a tertiary care center and their primary caregivers were included. Family emotional involvement and criticism scale and The burden assessment schedule were administered to assess the expressed emotions and caregivers′ burden. Carl Pearson Correlation test used to study the relationship between the variables. Results and Conclusion: The study highlighted the need for addressing expressed emotion in comprehensive psychosocial intervention plan. More attention should be paid to the needs of the caregivers in order to alleviate their burden in managing mentally ill patients.
Song, Y.; Groeneveld, B.S.; Boess, S.U.; Freudenthal, A.
Informal caregivers, who are usually family members or friends of care recipients, provide unpaid assistances to help care recipients remain in their homes. However, they may be prone to depression, grief, fatigue and changes in social relationships. This paper presents the development process of a
... stipends. Under this law, injured veterans' family caregivers also receive access to health care. Just as... system, our workplaces, and our communities. This month, as we reflect on the generosity, grace, and... America, by virtue of the authority vested in me by the Constitution and the laws of the United States,...
Full Text Available The world population is ageing, with the proportion of older people (65+ years expected to reach 21% in 2050 and to exceed the number of younger people (aged 15 or less for the first time in history. Because cancer is particularly a chronic disease of older people, a large increase in the number of elderly patients with cancer is anticipated. The estimated number of new cancer cases worldwide among people over 65 is expected to grow from about 6 million in 2008 to more than 11 million during the coming decade. By 2030, individuals over 65 are expected to account for 70% of all cancer patients in the Western world.Along with the increase in oncology patients, the number of older people caring for their ill spouses or other relatives is also growing, with the ensuing toll on these caregivers causing major concern, especially in western countries.In different societies the characteristics of family caregiver stressors, cultural norms concerning care giving, and the availability of support have a huge impact on those providing care. Any study of older caregivers of older cancer patients requires an integrative evaluation of ageing that takes into account cultural, social, psychological, and behavioral variables.This review proposes a critical discussion of the multidimensionality of the caregiving and of the impact that age, culture and gender have on it.
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…
Russell, C K; Phillips, L R; Cromwell, S L; Gregory, D M
Well-developed metaphors function as heuristic devices for the communication of scientific ideas. When applied to common, typical situations, metaphorical conceptualization enables a richer and deeper understanding. In this article, the routinized and taken-for-granted situation of elder-caregiver care negotiations is examined through the use of a dance metaphor, the dance of dependency. Metaphorical models of theory are intended to be elaborated and developed in ways that good poetic metaphors are not. Therefore, we systematically describe the general aspects of the dance (rules, facilitators, performances, aesthetics) and relate the specific elements of a dance to the dance of dependency. The picture that emerges is one of elder-caregiver care negotiations as performances, with elders as agents who actively and creatively engage caregivers in their dances of dependency. Participants in these dances sustain a complex organization of behavior to meet the situational demands and maintain themselves as fully integrated participants, based on standards set forth by the jointly negotiated working consensus of the dyad. The resulting description extends what is currently understood about everyday care negotiations, allowing an appreciation of the processes and dynamics by which care negotiations and elder-caregiver relational cultures in multiple contexts unfold, change, and are challenged. PMID:10731847
Pillemer, K; Finkelhor, D
Elderly abuse victims and a nonabused control group were compared to test the widely accepted proposition that such abuse results from the burden and stress placed on those caring for infirm and dependent elderly people. The study found substantially more support for the idea that abuse is associated with personality problems of the caregiver. PMID:2712152
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…
O'Quin, K. E.; Semalulu, T.; Orom, H.
Medication mismanagement is a growing public health concern, especially among elders. Annually, it is a major contributor to emergency hospitalization and nursing home placement. Elders and their caregivers, as healthcare consumers and stakeholders in this issue, are uniquely qualified to inform strategies to improve medication adherence. We…
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
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…
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…
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…
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Wood, Andrew W; Gonzalez, Jessica; Barden, Sejal M
Caregivers of cancer survivors face many burdens that often require treatment by mental health professionals. One intervention, mindfulness-based cognitive therapy, aims to help individuals change the ways in which they relate to their thoughts rather than changing their thoughts. In this manuscript, we discuss the use and adaption of mindfulness-based cognitive therapy with caregivers of cancer survivors as a way to decrease caregiver burden and increase caregiver quality of life. A session-by-session breakdown of how to tailor mindfulness-based cognitive therapy to caregivers of cancer survivors is provided.
Morano, Carmen L; King, Denise
This study used an adaptation of the stress and appraisal model to examine the mediating effects of religiosity on caregiving strain and gain with an ethnically diverse sample of 384 Alzheimer's disease caregivers. While the regression analysis indicated that religiosity did not mediate the stress of providing care for the entire sample, there were significant differences in the use of religiosity depending on the ethnicity (African American, Hispanic, and White non-Hispanic) of the caregiver, as well as significant differences between the three cohorts in the levels of caregiving strain (depression) and gain (self-acceptance). Implications for the use of religiosity as a protective factor for AD caregivers are discussed.
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…
Lee, I; Chou, Fan-Hao; Chen, Chung-Hey
Due to the phenomenon of Taiwan'saging population has made, long-term care has become an issue of increasingly emphasized importance. According to the statistics, the family takes responsibility for most long-term care duties and more than 70% of primary family caregivers are female. In the past, because of gender-based divisions of labor and gender role expectations made, it was taken for granted that females would be the socially preferred family caregivers. Those men who devoting in themselves to such work were regarded as a rare precious. As such, family care signified entailed different life experiences for males and females. Over the years, amendments to the civil code have recognized family care contributions, and the allowance for caregivers underlines that care responsibilities have shifted away from the family to society. Traditional gender divisions of labor today are significantly more blurred; family structures have become smaller in size; female labor in the workplace has increased; and ten-year long-term care plans and long-term care insurance have been successively implemented. These transformations will make labor outsourcing more and more popular and transform family care from a private problem to a pubic policy issue. In the future, family caregivers require consideration and support on a sustained basis. It is also important to improve and monitor the quality of care services. Nurses, the major professional members of long-term care teams, should be concerned over the issue of family care while providing nursing care. They should include family caregivers in the care plan so that they can make sure that patients receive comprehensive and constant care in order to enhance the overall quality of nursing care.
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.
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
Lathan, Corinna; Wallace, Angela S.; Shewbridge, Rita; Ng, Nicole; Morrison, Glenn; Resnick, Helaine E.
Background Many factors impact caregivers’ cognitive health and, by extension, their ability to provide care. This study examined the relationship between psychosocial factors and cognitive performance among dementia caregivers and established a virtual cohort of caregivers for future research. Methods Data on 527 caregivers were collected via a Web-based survey that assessed cognitive performance. Caregiver data were compared to corresponding data from 527 age-, race-, gender-, and education-matched controls from a normative database. Caregiver self-reported sleep, stress, health, and social support were also assessed. Results Caregivers performed significantly worse than controls on 3 of 5 cognitive subtests. Stress, sleep, perceived support, self-rated health, years of caregiving, race, and gender were significant predictors of cognitive performance. Conclusion In this sample of dementia caregivers, psychosocial factors interacted in complex ways to impact cognitive performance. Further investigation is needed to better understand how these factors affect cognitive performance among caregivers. This could be accomplished by the establishment of a virtual cohort that facilitates the development of digital tools to support the evaluation and management of caregiver needs in a manner that helps them remain effective in their caregiving roles. PMID:27099613
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.
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.
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
Y. John Mei
Full Text Available Lifestyle changes such as in physical exercise, social activity, and diet can mitigate cognitive decline and improve quality of life in caregivers and care recipients with cognitive impairment. However, caregiver perspectives on lifestyle change remain largely unexamined. This study compares perspectives among caregivers for those with dementia and those with mild cognitive impairment (MCI. Interviews were conducted with caregivers in two sites in China, and thematic similarities and differences were examined between the two groups. Caregivers from both groups identified exercise, social activity, and diet as healthy ways of life. Differences were found in approaching lifestyle change based on health of the care recipient. Caregivers for patients with dementia found more often that they had no time or possibility for change, while caregivers for individuals with MCI were more often hopeful about change.
Full Text Available 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 management and the importance of self-care, skills training to aid patient management, stress management training, and problem-solving and decision-making guidance. Conclusion: Interventions that are individually tailored to the caregiver are particularly effective at reducing caregiver burden and should be further investigated. The use of effective pharmacological treatment for the improvement and/or stabilisation of AD symptoms in the patient is also likely to improve caregiver burden.
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
Harmell, Alexandrea L; Chattillion, Elizabeth A; Roepke, Susan K; Mausbach, Brent T
The recent aging trend in the United States has resulted in exponential growth in the number of informal dementia caregivers. Caring for a family member with dementia has been associated with negative health outcomes that are likely related to physiologic changes resulting from stress. However, caregiving is not always associated with health morbidity. In this review, we highlight resilience factors that appear to have a beneficial relationship with health outcomes. Specifically, we highlight 11 studies that examined the relationship of one of three broad resilience domains (personal mastery, self-efficacy, and coping style) to caregiver health outcomes. Our main findings were that higher levels of personal mastery and self-efficacy, and increased use of positive coping strategies appear to have a protective effect on various health outcomes in dementia caregivers. Continued research is warranted to help guide prospective directions for caregiver interventions focusing on increasing caregiver resilience and the corresponding impact on caregiver health.
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
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.
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…
Mugisha, Joseph; Scholten, Francien; Owilla, Sebastian; Naidoo, Nirmala; Seeley, Janet; Chatterji, Somnath; Kowal, Paul; Boerma, Ties
Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self
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.
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
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...
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
Awadalla Abdel W
Full Text Available Abstract Background Research interest in the quality of life (QOL of persons with multiple sclerosis (MS has been spurred by the need to broaden outcome measures. Far less of this interest has been directed at the family caregivers, who bear most of the burden of care. The objectives of the study were: First, to compare the subjective QOL of family caregivers of persons with relapsing remitting and progressive MS, with those of a matched general population sample and caregivers of diabetes and psychiatric patients. Second, to assess the relationship of QOL with caregiver attitudes to MS and patient's variables. Methods Consecutive MS clinic attendees were assessed with the 26 – item WHOQOL Instrument, and for depression and disability. Similarly, caregivers independently rated their own QOL as well as their impression of patients' QOL and attitudes to patients' illness. Results The 170 caregivers, mean age 35.7 years, had no significant diagnostic differences in QOL domain scores and attitudes to MS. Caregivers had significantly lower QOL than the general population control group for five out of six domains and the general facet (P Conclusion Caregivers need specific attention if they are less educated, unemployed, afraid of having MS and caring for patients with longer duration of illness and less education. In particular, attention to patients' depression and disability could improve caregivers' QOL. Caregivers need specific programs to address fear of having MS, negative attitudes to illness and their unmet needs.
Stone, R I; Short, P F
The competing demands of work and elder care are the subject of this study. The employment decisions of the informal caregivers of a nationally representative sample of disabled elders were examined using a nested multinomial logit model. Findings from the work accommodation model demonstrated that primary caregivers and those caring for elders with greater care needs are more likely to take unpaid leave, reduce work hours, or rearrange their work schedules to assume elder care responsibilities. Being female, white, and in fair-to-poor health also increased the likelihood of work accommodation. The model predicting employment of a caregiver revealed that the prospect of having to accommodate work to the demands of caregiving keeps some people from work entirely. However, not all caregivers would choose to work in the absence of caregiving responsibilities. After controlling for the probability of work accommodation, need for care, and availability of others to care, it is more likely that younger, white and more highly educated caregivers will be employed. The self-selection of working caregivers observed in this study should be considered when forecasting changes in caregiving costs associated with changes in the labor force participation of caregivers as a result of deliberate policies or social and demographic trends.
Zhan, Heying Jenny
The Chinese cultural norm of xiao, or filial piety, has long been held responsible for the practice of familial caregiving for older parents. Yet few explore the gendered nature of such a cultural practice in the current changing economic dynamics. Using data collected in 1997-1999 from 110 Chinese caregivers who were caring for physically dependent elder parents, this researcher explores the influence of changing economic conditions and Chinese cultural values in caregiver task performance and reward. Findings suggest that Chinese caregiving is highly gendered: Women are more likely to be unemployed and provide more personal care than men; sons are not more likely than daughters to provide financial assistance for parents. Chinese cultural values are playing an important role sanctioning caregiver task performance. Caregivers who believed in patrilocal norms provided more financial assistance; caregivers who reported higher social pressure provided more personal care. While the caregivers' report of social pressure is positively related to the caregivers' performance in personal care tasks, it is negatively related to caregiver reward. The author further explores the gendered implications for the changing economy and culture in China.
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
Ice, Gillian H; Sadruddin, Aalyia F A; Vagedes, Amy; Yogo, Jaja; Juma, Elizabeth
Globally, a growing number of grandparents are caring for their grandchildren. The impact and burden associated with increases in custodial grandparenting, however, may differ by culture. In the United States, the caregiving role has been shown to be a significant source of stress for older adults. In cultures in which grandparents are more commonly involved in the care of young children, however, increasing caregiving roles may not be viewed as stressful. This study examines the impact of caregiving on perceived and physiological measures of stress among 640 Luo elders (60+) in western Kenya, where high HIV prevalence among younger-to-middle aged adults has led to a heavy burden of orphan care. Perceived stress levels were measured using the Luo Perceived Stress Scale (LPSS). Salivary cortisol and casual blood pressure were used as biomarkers of stress. Results were analyzed using random mixed effects models. Overall this study showed that caregivers have higher levels of perceived stress than non-caregivers. For women, household composition, including the number of orphans and adults in the homestead impacted perceived stress. Among men, those who perceived caregiving as burdensome had higher perceived stress. Despite the association between caregiving and perceived stress, there was a minimal relationship between caregiving and the two biomarkers of stress. This may be because caregiving is superimposed onto other stressors and therefore has a minimal physiological impact. These results highlight the importance of local context in determining the impact of the caregiving role on older adult well-being. PMID:22475406
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.
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
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).…
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
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
Alberto Manuel Quintana
Full Text Available This study aimed to comprehend the meanings that parents/caregivers of children and adolescents diagnosed with cancer attribute to their child’s disease. It is a qualitative, exploratory/descriptive study. Data were collected through group discussions and individual interviews with the parents/caregivers of children/adolescents and categorized using content analysis. The impressions of the researchers were recorded in a field diary, contributing to the data analysis. The results indicate that the disease and treatment involve periods of psychological suffering that affect the family structure. Cancer was reported as a real enemy to be fought through coping or avoidance, which generates expectations about the future and causes feelings of fear, as well as hope. It was concluded that the childhood cancer causes repercussions in the family relationships, the recognition of which can contribute to both the preparation of professional teams who work with this population, as well as the public health policies developed.
Full Text Available Purpose. To determine the relationship between having a child with a DSD including ambiguous external genitalia, as well as the decision of whether or not to have early genitoplasty for that child, on the mental health and parenting characteristics of caregivers. Materials and Methods. Caregivers were recruited from centers that specialize in DSD medicine and completed the Beck Depression Inventory 2nd Edition (BDI-2, Beck Anxiety Index (BAI, Parent Protection Scale (PPS, Child Vulnerability Scale (CVS and Parenting Stress Index/Short Form (PSI/SF. Results and Conclusions. Sixty-eight caregivers provided informed consent and completed the study. Among female caregivers whose children never received genitoplasty, greater parenting stress was reported . For male caregivers, those whose children received genitoplasty within the first year of life reported more overprotective parenting and parenting stress than those whose children received genitoplasty later than 12 months of age ; , respectively.
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, ...
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...
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...
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
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 ...
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...
Bier, J C; Van den Berge, D; de Wouters d'Oplinter, N; Bosman, N; Fery, P
Facing difficulties due to dementia syndromes, systemic care is necessary. Amongst therapies assessed specifically to caregivers, psychoeducative steps seem to be the strongest effective one on neuropsychiatrics symptoms. Psychoeducations tend to teach the caregivers to modify their interactions with patients via a better understanding of illnesses and patients. Our training "Pour mieux vivre avec la maladie d'Alzheimer", applied in groups of eight to twelve persons, consists in twelve sessions of two hours each. To assure the biggest possible availability, we recently incorporated the concomitant coverage of patients into artistic workshops. These sessions of art-therapy realized in parallel to our psychoeducative program will thus be estimated according to the same rigorous methodology. The critical evaluations realized by participants at the end of our program reflect the outcome of our main objective (to teach to modify interactions with the patients) while contributing to the improvement of social contacts and to the learning of calling to existing helps. These preliminary results strongly argue for the pursuit and even extension of this kind of caregiver's management.
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
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
Jecker, Nancy S
This paper asks whether adult children have a duty of justice to act as caregivers for their frail, elderly parents. I begin (Sections I. and II.) by locating the historical reasons why relationships within families were not thought to raise issues of justice. I argue that these reasons are misguided. The paper next presents specific examples showing the relevance of justice to family relationships. I point out that in the United States today, the burden of caregiving for dependent parents falls disproportionately on women (Sections III. and IV.). The paper goes on to use Rawls' theoretical tool of the veil of ignorance to argue that caring for parents should not be linked to a person's sex and more generally, that there is no duty of justice to assume the role of caregiver for dependent parents (Sections V.). Although justice does not provide the moral foundations for parent care, I show that it nonetheless places important limits on the instinct to care. I conclude that the voice of justice should be audible, and is intrinsically present, within families.
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
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
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...
Piersol, Catherine Verrier; Herge, E Adel; Copolillo, Albert E; Leiby, Benjamin E; Gitlin, Laura N
Caregiver appraisal influences care decisions and may place the person with dementia at risk. The Functional Capacity Card Sort (FCCS) was developed to determine caregiver appraisal. The objective of this study was to examine FCCS psychometric properties and utility, using data from a cross-sectional study (N = 86). The FCCS had moderately positive association (convergent validity) with a related activities of daily living (ADL) index (r = .43, p < .0001), weak negative association (discriminant validity) with an unrelated neuropsychiatric symptom index (r = -.14, p = .16), and strong caregiver agreement (interrater reliability) in ranking cards from high to low function, Kendall's W(5, 72) = 0.83, p = .0001. When compared with occupational therapy assessment, the FCCS distinguished caregiver concordant estimation (17%), underestimation (22%), and overestimation (61%) of function. The FCCS is a valid and reliable tool used in conjunction with formal assessment to identify caregiver over- or underestimation, which has implications for patient safety and caregiver education. PMID:27618848
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
Yamamoto-Mitani, N; Tamura, M; Deguchi, Y; Ito, K; Sugishita, C
This research examined family caregivers' attitudes toward their elderly relatives living with dementia. A convenience sample of fifty-nine Japanese caregivers was used. Caregiver attitudes were investigated multi-dimensionally (negative attitude, attitude of acceptance, and attitude of active interaction) using a questionnaire developed specifically for this study. The dimensions did not correlate with one another but were associated with different caregiver/elderly characteristics: i.e., negative attitude with short stay use, length of time caregivers and elderly relatives were living together and problem behaviors; attitude of acceptance with sleeping pill use and the type of relationship; and attitude of active interaction with dementia diagnosis. The results have implications for nurses in facilitating constructive caregiver attitudes. PMID:10785532
Chung, Kyusuk; Essex, Elizabeth Lehr; 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 minority patients who otherwise would not opt for hospice or enroll too late for comprehensive hospice care services. Furthermore, the highest level of knowledge-acquired through caregivers' health care occupations-appears to influence hospice care after hospice enrollment. Caregivers with that level of knowledge made requests for changes in site of care and/or additional services that may enhance the quality of hospice care that their loved ones receive.
Yamamoto-Mitani, N; Tamura, M; Deguchi, Y; Ito, K; Sugishita, C
This research examined family caregivers' attitudes toward their elderly relatives living with dementia. A convenience sample of fifty-nine Japanese caregivers was used. Caregiver attitudes were investigated multi-dimensionally (negative attitude, attitude of acceptance, and attitude of active interaction) using a questionnaire developed specifically for this study. The dimensions did not correlate with one another but were associated with different caregiver/elderly characteristics: i.e., negative attitude with short stay use, length of time caregivers and elderly relatives were living together and problem behaviors; attitude of acceptance with sleeping pill use and the type of relationship; and attitude of active interaction with dementia diagnosis. The results have implications for nurses in facilitating constructive caregiver attitudes.
Nogueira, Paula Cristina; de Carvalho Nagliate, Patrícia; de Godoy, Simone; Rangel, Elaine Maria Leite; Trevizan, Maria Auxiliadora; Mendes, Isabel Amélia Costa
Providing caregivers with health education through educational technologies enhances safe care; and stimulates the decision process and communication among professionals, caregivers and patients. This article is an integrative review to identify what educational technologies have been used for health education to caregivers. The databases Web of Science, Bireme and Scopus were consulted. The inclusion criteria are as follows: full papers, published between 2001 and 2011, in English, Portuguese or Spanish. The descriptors used are the following: educational technology, health education and caregivers. Thirty-four papers were found, 27 of which were excluded because they did not comply with the inclusion criteria, resulting in a final sample of 7 papers. The results evidenced the use of light and hard technologies in health education for caregivers, aimed at the therapeutic discussion of care as well as telehealth service delivery. Research is needed which uses and assesses the use of hard educational technologies in health education for caregivers.
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.
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
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...
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.
Bevans, Margaret F; Ross, Alyson; Wehrlen, Leslie; Klagholz, Stephen D; Yang, Li; Childs, Richard; Flynn, Sharon L; Remaley, Alan T; Krumlauf, Michael; Reger, Robert N; Wallen, Gwenyth R; Shamburek, Robert; Pacak, Karel
There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver's health are less understood. This study sought to compare self-reported stress, anxiety and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient's HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days) and (3) 6 weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57% or 57.1%) and married (95.2%), with a mean age of 52 ± 11.4 years. Caregiver perceived stress, anxiety and depression scores were significantly higher than controls (p 0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p = 0.013; ES = 0.81) and 6 weeks after discharge (p = 0.028; ES = 0.72) but exhibited no significant relationship between self-reported stress and serum cortisol. In addition, caregivers showed a significant inverse relationship between stress and epinephrine levels (r(s)=-0.654, p = 0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted.
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...
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...
Millings, A; 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...
Bragstad, Line Kildal; Kirkevold, Marit; Hofoss, Dag; Foss, Christina
This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co
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...
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...
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.
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...
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...
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
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
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.
Heidemann, Christian Hamilton; Godballe, Christian; Kjeldsen, Anette Drøhse;
OBJECTIVE: Otitis media in children may have a considerable impact on caregiver quality of life. The disease-specific Caregiver Impact Questionnaire is designed to assess caregiver quality of life in relation to child otitis media. Assessment of the psychometric properties of this instrument...... Danish version of the Caregiver Impact Questionnaire is a valid and reproducible measurement tool that is also sensitive to measuring change in the current setting. A change score representing minimal important change as perceived by the respondent is proposed. Results of this study support the use...
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.
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
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
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
Kershaw, Paul; Harkey, Tammy
The authors examine the politics of caregiving for identity to enrich scholarship about power. They report on a qualitative study with Aboriginal mothers who parent in the wake of the Canadian Indian residential schools (IRS). Just as this system disrupted familial caregiving to assimilate Aboriginal Peoples, data show some mothers now strive to organize their caregiving in ways that serve decolonization and community empowerment. Building on their expertise, the authors argue that counter-colonial family policy investments to support such caregiving should factor in any just compensation for the IRS system if its population, and not just individual, costs are to be redressed.
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...
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
Smith, C E; Kleinbeck, S V; Boyle, D; Kochinda, C; Parker, S
The literature does not contain a measure of family caregivers' motives for helping provide daily complex home care. Such a measure will permit nurses to assess and provide interventions specific to each caregiver's motivation for helping. The purpose of this study was to apply Batson's empirically derived helping pathway theory to the measurement of caregiver motives for helping and develop a short form that does not add to the burden of caregiving. A Principal Components factor analysis (N = 93) of Family Caregivers' Motives for Helping Scale is used. Criterion-related validity is ascertained using a triangulated, independent validation procedure with qualitative data from a subsample (N = 41). Subsample subjects' interview data were categorized, based on Batson's theoretical pathway definitions, by coders blinded to caregiver Motives for Helping Scale scores. Three of Batson's four helping pathways (reward seeking, altruism, and punishment-avoidance) were extracted during factor analysis. This three-factor solution explained 66.6% of the variance and was confirmed by a 97% agreement between three of Batson's pathways and caregivers' helping motive score. The content analyses of the descriptive interview data also coincide with the 3-factor solution. The scale items representing Batson's fourth helping pathway, distress reaction, were not retained due to cross loading. The Family Caregivers' Motives for Helping Scale accurately measures three of four theoretically derived motivations for helping another. The scale should be reanalyzed in a larger sample of caregivers. Aligning nursing interventions to caregiver motives for helping can provide reinforcement for caregivers and potentially enhance home care outcomes. PMID:11881267
Smith, C E; Kleinbeck, S V; Boyle, D; Kochinda, C; Parker, S
The literature does not contain a measure of family caregivers' motives for helping provide daily complex home care. Such a measure will permit nurses to assess and provide interventions specific to each caregiver's motivation for helping. The purpose of this study was to apply Batson's empirically derived helping pathway theory to the measurement of caregiver motives for helping and develop a short form that does not add to the burden of caregiving. A Principal Components factor analysis (N = 93) of Family Caregivers' Motives for Helping Scale is used. Criterion-related validity is ascertained using a triangulated, independent validation procedure with qualitative data from a subsample (N = 41). Subsample subjects' interview data were categorized, based on Batson's theoretical pathway definitions, by coders blinded to caregiver Motives for Helping Scale scores. Three of Batson's four helping pathways (reward seeking, altruism, and punishment-avoidance) were extracted during factor analysis. This three-factor solution explained 66.6% of the variance and was confirmed by a 97% agreement between three of Batson's pathways and caregivers' helping motive score. The content analyses of the descriptive interview data also coincide with the 3-factor solution. The scale items representing Batson's fourth helping pathway, distress reaction, were not retained due to cross loading. The Family Caregivers' Motives for Helping Scale accurately measures three of four theoretically derived motivations for helping another. The scale should be reanalyzed in a larger sample of caregivers. Aligning nursing interventions to caregiver motives for helping can provide reinforcement for caregivers and potentially enhance home care outcomes.
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.
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...
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
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.
Miller, Katherine M; Kabat, Margaret; Henius, Jennifer; Harold, Courtney; Van Houtven, Harold
Few studies have explored the health effects of caregiving for post-9/11 veterans who have been traumatically injured, have traumatic brain injuries, or have post-traumatic stress disorder. Post-9/11 veterans and their caregivers tend to be younger than veterans who served exclusively prior to 9/11. In response to the needs of caregivers, Public Law 111-163, the Caregivers and Veterans Omnibus Health Services Act of 2010, was passed, providing unprecedented support for informal caregivers of veterans. This support includes a monthly stipend and health insurance for caregivers who meet eligibility criteria. The uptake in these support services, and the resulting cost of services, has far surpassed expectations. As the Department of Veterans Affairs continues to provide caregiver support services, it is essential to determine the value and direct impact of the services provided to caregivers and veterans. PMID:26946865
Kimemia, Muthoni; Asner-Self, Kimberly K.; Daire, Andrew P.
Given the high prevalence of HIV/AIDS in Kenya, more Kenyans now find themselves in the role of informal caregiver for a family member or multiple family members living with HIV/AIDS. However, there exists little research on how these individuals cope. The present study explores coping responses among caregivers for family members living with…
Coon, David W.; Thompson, Larry; Steffen, Ann; Sorocco, Kristen; Gallagher-Thompson, Dolores
Purpose: This study examines the short-term impact of two theoretically based psychoeducational small group interventions with distressed caregivers, and it also examines the role of specific moderator and mediator variables on caregiver outcomes. Design and Methods: Female participants (N = 169) aged 50 and older who were caring for a…
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…
Stuart, Melissa; McGrew, John H.
The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation,…
Gardner, Margo; Martin, Anne; Brooks-Gunn, Jeanne
In a sample of urban youth (N = 1,070), we examined the links between primary caregiver affect (i.e., warmth and hostility) and two measures of sexual behavior in adolescence--early sexual initiation and sex with multiple partners. We also examined the extent to which neighborhood disadvantage moderated associations between caregiver affect and…
Neumeister, Kristie Speirs; Yssel, Nina; Burney, Virginia H.
Using grounded theory, this study investigated primary caregivers' perceptions of the role they play in influencing the academic success of students formally identified as twice-exceptional. Data from interviews were coded and analyzed for themes. Results indicated that primary caregivers (mothers) perceived that they played a major role in…
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…
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
Wekerle, Christine; Wall, Anne-Marie; Leung, Eman; Trocme, Nico
Objective: Our goal is to assess the effect of caregiver vulnerabilities, singly and in combination, on the substantiation of child abuse (physical, sexual) and neglect, while controlling for relevant background variables. We test the moderator role of adult partner violence in qualifying the relationship between caregiver vulnerabilities and…
Much research examines the professional nursing practices of traditional and modern caregivers, but it remains unclear whether the delivery of extra-required services is diminished as the caregiver moves from traditional to modern community. Building on the classical works of sociologists Ferdinand Tonnies, Max Weber, and Emile Durkheim, this…
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
Blusi, Madeleine; Dalin, Rolf; Jong, Mats
We conducted a pragmatic, mixed methods study comparing rural family caregivers receiving e-health caregiver support (n = 35) with a control group (n = 21) receiving conventional, non-e-health, caregiver support. After 18 months, the benefits of support were evaluated using the Care Effectiveness Scale (40-items exploring the domains of preparedness, enrichment and predictability). In all domains the e-health group scored significantly higher than the control group. The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale 0-10. In addition, semi structured interviews were conducted with a sub-sample of the caregivers. For the e-health group flexibility, availability and being able to individualise the support were essential factors. All caregivers in the control group found conventional support to be beneficial, but also stressed unmet needs related to the conventional support being standardised and non-flexible. The study suggests that providers of caregiver support should offer e-health support as an alternative to conventional caregiver support, as it can be more beneficial to family caregivers.
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…
Cohen, C.C.C.; Beijers, R.; Doornen, L.J.P. van; Weerth, C. de
Caregiving interest in men (N=46) during the third trimester of their partner's pregnancy was examined. The study included both explicit and implicit measures of caregiving interest, assessments of basal urinary concentrations of oxytocin and vasopressin, and exogenous (intranasal) application of th
Warner-Lambert Co., Morris Plains, NJ.
This book is designed to take caregivers through the basics of patient care and to give them the information needed to guide them through the medical, legal, and financial issues that accompany Alzheimer's disease. The seven chapters of the book cover the following topics: understanding Alzheimer's; caring for a caregiver; medical update; finances…
Kinney, Jennifer M.; Stephens, Mary Ann Parris
Primary caregivers to Alzheimer disease patients (N=60) twice completed Caregiving Hassles Scale and reported on their well-being. Scale provided reliable and psychometrically sound instrument for assessing hassles associated with assistance in basic and instrumental activities of daily living, care-recipient cognitive status and behavior, and…
Goodman, Catherine Chase; Pynoos, Jon
Compared caregivers (N=31) in telephone peer support network and caregivers (N=35) listening to telephone informational lectures. Both groups showed increases in information, perceived social support, satisfaction with social supports. Lecture participants showed greater information gain and more frequent emotional support from family and friends;…
Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.
Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to…
Reamy, Allison M.; Kim, Kyungmin; Zarit, Steven H.; Whitlatch, Carol J.
Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers' beliefs about…
... being requested for information needed to improve dementia care for patients and care givers. DATES...: Engaging Caregivers in the Care of Veterans with Dementia, VA Form 10-0537, Appendices a-u. OMB Control... improve dementia care for patients and family caregivers. Affected Public: Individuals or...
Reich, S.; Bickman, L.; Heflinger, C. A.
Increasingly, professionals are recognizing the need to involve parents and other caregivers in the mental health treatment of children. However, parents and caregivers may not feel efficacious when participating in mental health care. Self-efficacy is a mechanism of human agency that describes people's beliefs about their capabilities to exercise…
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
Oremus, Mark; Wolfson, Christina; Vandal, Alain C.; Bergman, Howard; Xie, Qihao
Caregivers play a determining role in choosing treatments for persons with Alzheimer's disease. The objective of this study was to examine caregivers' willingness to have persons with Alzheimer's disease continue taking cholinesterase inhibitors in the event that any 1 of 11 adverse effects was to occur. Data were gathered via postal questionnaire…
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
Hullmann Stephanie E
Full Text Available Abstract Background The current study sought to compare levels of overprotection and parenting stress reported by caregivers of children with disorders of sex development at four different developmental stages. Methods Caregivers (N = 59 of children with disorders of sex development were recruited from specialty clinics and were asked to complete the Parent Protection Scale and Parenting Stress Index/Short Form as measures of overprotective behaviors and parenting stress, respectively. Results Analyses of covariance (ANCOVAs were conducted to examine differences between caregiver report of overprotection and parenting stress. Results revealed that caregivers of infants and toddlers exhibited more overprotective behaviors than caregivers of children in the other age groups. Further, caregivers of adolescents experienced significantly more parenting stress than caregivers of school-age children, and this effect was driven by personal distress and problematic parent-child interactions, rather than having a difficult child. Conclusions These results suggest that caregivers of children with disorders of sex development may have different psychosocial needs based upon their child's developmental stage and based upon the disorder-related challenges that are most salient at that developmental stage.
Røhder, Katrine; Harder, Susanne
A new questionnaire that assess caregiving regulation representations is presented as an important measure of parenting that contributes to the field with information on how mothers understand themselves as caregivers and their relationship with the child. Preliminary data from the WARM study – a...
attachment classification (George & Solomon, 2008). Aims of the Study: As little is known on how the caregiving system develops when the mother suffers from severe mental illness (SMI), this presentation will explore the role of maternal psychopathology for the pre- and postnatal development of caregiving...
Li, Lydia W.; McLaughlin, Sara J.
Purpose of the study: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional…
U.S. Department of Health & Human Services — This report estimates the economic value of family caregiving at $450 billion in 2009 based on 42.1 million caregivers age 18 or older providing an average of 18.4...
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…
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…