The physical,emotional,and caregiving quality of caregivers for children with malignant solid tumors is significantly influenced by mental toughness.The definition of mental toughness,study methods,primary influencing...The physical,emotional,and caregiving quality of caregivers for children with malignant solid tumors is significantly influenced by mental toughness.The definition of mental toughness,study methods,primary influencing factors,and intervention strategies for the mental toughness of caregivers of children with malignant solid tumors will be examined in this paper.To improve the mental toughness of caregivers of children with malignant solid tumors,it is recommended that future studies enhance the number of intervention research methods and establish particular evaluation tools.展开更多
BACKGROUND Children with thalassemia need care from the first years of life owing to the physical and psychological effects of their disorder.Thalassemia is a concern not only for the children’s physical health but a...BACKGROUND Children with thalassemia need care from the first years of life owing to the physical and psychological effects of their disorder.Thalassemia is a concern not only for the children’s physical health but also the mental health of themselves and their caregivers.AIM To screen the psychosocial problems and assessment of psychiatric morbidities among thalassaemic children and their caretakers,along with an assessment of caregiver burden in them.METHODS In this observational cross-sectional study,children with transfusion-dependent thalassemia,were included and were assessed for psychiatric morbidity and global functioning.Their parents were assessed for psychiatric morbidity and the caregiver burden they faced.All the parents completed two different questionnaires to assess their knowledge about the psycho-social functioning[using Pediatric Symptom Checklist-35(PSC-35)]of their children and the level of the burden faced by them by Caregiver Burden Scale(CBS).RESULTS A total of 46 children(28 boys and 18 girls)with transfusion-dependent thalassemia with a mean age of 8.83±2.70 years and 46 parents(12 fathers and 34 mothers)were included in this study.More than 32 children had some psychosocial problems on screening by PSC-35.On assessment by CBS moderate caregiver burden was perceived in domains of general strain,isolation,disappointment,emotional involvement,and environment.A total of 65.3%of children and 62.7%of parents were diagnosed with psychiatric problems.CONCLUSION Thalassemia affects not only the persons with the disorder but also their caregivers in several aspects,including their psychosocial well-being.This study emphasizes the role of a supportive group in the psychological well-being of caregivers,which could be used to prevent the pathological effects of caregiver burden and enhance their psychological well-being through counselling.展开更多
Background:This study explored the personal recovery of consumers and their caregivers receiving the strength-based family intervention.Method:A three-year project was implemented with 43 dyads from 5 community psychi...Background:This study explored the personal recovery of consumers and their caregivers receiving the strength-based family intervention.Method:A three-year project was implemented with 43 dyads from 5 community psychiatric rehabilitation agencies in northern,central,and Southern Taiwan.This paper presents qualitative analysis with a focus on describing the experiences of personal recovery.To gain a deeper understanding of the participants’personal experiences and perspectives,semi-structured in-depth interviews were conducted on three occasions(six months after the inception of the experiment,18 months after,and when the participants left the services of this study).Over the three occasions,a total of 27 consumers and 28 caregivers were interviewed.Data analysis was conducted based on grounded theory.Results:Consumers expressed positive experiences in the domain of the recovery process(positive sense of self,taking responsibility,and better coping)and on the objective indicators of recovery(functioning,interpersonal interaction,and family relationship).Caregivers experienced lessened psychological burdens.They also revealed improvements to their sense of self(recovery process)and subjective indicators of recovery outcomes,including feeling empowered and having a better quality of life.Moreover,they had better interaction with consumers(objective domain of recovery).Conclusion:These findings suggest that the strength-based perspective is an acceptable,culturally-compatible approach among Chinese mental health consumers and their caregivers.The investigators suggest that additional resources would be necessary to support a change in the service system in Taiwan so that family-based services can be provided to promote the recovery of mental health consumers and their family caregivers.展开更多
Caring for a person with Parkinson’s disease (PD) extends far beyond the ordinary exchange of assistance among people in a close relationship. Caregivers must learn to cope with the patient’s increasing disability a...Caring for a person with Parkinson’s disease (PD) extends far beyond the ordinary exchange of assistance among people in a close relationship. Caregivers must learn to cope with the patient’s increasing disability and loss of independence. The aim of this systematic review was to critically assess and summarize the evidence of the influence of the demographic and clinical characteristics of patients with PD on caregiver burden by means of a caregiver burden instrument. In order to identify articles, electronic databases and reference lists were searched using the search word “Parkinson’s disease” in combination with “caregiver” or “carer” and with “burden” or “distress” or “stress” or “strain”. Thirty one articles were deemed eligible for inclusion. The methodological quality of the studies was evaluated. No studies were excluded due to low quality. The results revealed similar associations among caregiver burden, demographic variables and patient characteristics, across different caregiver burden instruments and various clinical scales. Higher PD stage and functional disability are the non-motor characteristics that contribute the most to caregiver burden. However, when comparing the impact of patient motor and non-motor symptoms, several studies found that mental symptoms had a stronger impact on caregiver burden than motor symptoms. No association was observed between caregiver burden and patient and caregiver demographics with the exception of the sub-scale analysis of caregiver burden in various age groups. Interpreting the results of studies that employ a range of different clinical assessment scales and burden instruments makes it challenging to provide a valid summary of caregiver burden in PD. The most commonly used analysis methods contribute little information about burden variation across caregiver groups or which areas are the most burdensome for caregivers. There is a need for a more uniform use of recommended instruments and for longitudinal studies.展开更多
Purpose:The level of care burden experienced by caregivers of patients with spinal cord injury and their coping style were evaluated in order to identify ways to improve their capacity to respond and reduce the care b...Purpose:The level of care burden experienced by caregivers of patients with spinal cord injury and their coping style were evaluated in order to identify ways to improve their capacity to respond and reduce the care burden.Methods:A convenience sampling method was used to select 150 spinal cord injury patients who were discharged from the Second and the Third Affiliated Hospital of Nanchang University and their primary caregivers.The Chinese version of the Zarit Caregiver Burden Interview and the Simplified Coping Style Questionnaire were distributed to assess caregiver burden and coping strategies.Results:The care burden score of the caregivers of patients with spinal cord injury was 52.9111.56 points.Eighty-eight percent of caregivers reported moderate or severe care burden levels.The largest proportion of caregivers were female spouses,who were less likely to use an active coping strategy.A negative coping strategy was more frequently used by caregivers compared to healthy adults,and was positively correlated with burden of care.In contrast,a negative correlation was found between the care burden and an active coping style.Conclusion:Primary caregivers of spinal cord injury patients report a heavy burden of care.As active coping strategies are more beneficial,medical care providers should encourage caregivers to make more use of these coping styles to promote physical and mental health for themselves,their patients and their family,as well as to improve the quality of care provided.展开更多
The aim of the present review was to examine objective and subjective burdens in primary caregivers(usually family members) of patients with bipolar disorder(BD) and to list which symptoms of the patients are consider...The aim of the present review was to examine objective and subjective burdens in primary caregivers(usually family members) of patients with bipolar disorder(BD) and to list which symptoms of the patients are considered more burdensome by the caregivers. In order to provide a critical review about caregiver's burden in patients with bipolar disorder, we performed a detailed Pub Med, Bio Med Central, ISI Web of Science, Psyc INFO, Elsevier Science Direct and Cochrane Library search to identify all papers and book chapters in English published during the period between 1963 and November 2011. The highest levels of distress were caused by the patient's behavior and the patient's role dysfunction(work, education and social relationships). Furthermore, the caregiving role compromises other social roles occupied by the caregiver, becoming part of the heavy social cost of bipolar affective disorder. There is a need to better understand caregivers' views and personal perceptions of the stresses and demands arising from caring for someone with BD in order to develop practical appropriate interventions and to improve the training of caregivers.展开更多
Objective:Research suggests that caregivers of children with asthma experience a substantial amount of stress,though no comprehensive study examines this problem.Here we both quantitatively and qualitatively examined ...Objective:Research suggests that caregivers of children with asthma experience a substantial amount of stress,though no comprehensive study examines this problem.Here we both quantitatively and qualitatively examined the burden on caregivers of children with asthma.Methods:Surveys were administered to 138 caregivers of asthmatic children by convenience sampling.The Zarit Caregiver Burden Interview(ZBI)was used to assess the degree of caregiver burden.In addition,13 qualitative semi-structured interviews were carried out via purposive sampling and were used to explore the perception of caregivers.SPSS and content analysis were used to analyze quantitative and qualitative data,respectively.Results:We found that caregiver burden(mean=31.56±14.19)ranged from 24%with no or mild burden,52%with mild to moderate burden,22%with moderate to severe burden and 2%with very severe burden.Caregiver burden was also assessed as 5 different dimensions.Selfcriticism ranked most burdensome(2.09±1.05),followed by sacrifice(1.57±0.94),embarrassment/anger(1.30±0.80),dependency(1.21±0.77),and lastly,loss of control(1.20±0.84).The highest individually scored item on the ZBI was“fear of the future of the relative”(mean=3.04).Interviews of caregiver burden were summarized into three main themes,namely:1)life is too chaotic;2)negative emotions;and 3)gaps in themedical support system.Conclusions:These findings expand our understanding about the burden caregivers of children with asthma face,and may help to propose targeted strategies to help caregivers adapt to their roles,and maintain and promote the health of themselves and their families.展开更多
Caring for a mentally ill family member is well known to be mostly a stressful, distressing and burdensome experience. The dominant model for examining the process of caregiving has been the stress-appraisalcoping par...Caring for a mentally ill family member is well known to be mostly a stressful, distressing and burdensome experience. The dominant model for examining the process of caregiving has been the stress-appraisalcoping paradigm, in which interactions between stressors, appraisals, coping, and various mediators produce the eventual outcomes in terms of distress or wellbeing among caregivers. Ethnic and cultural factors have traditionally received the least research attention as mediators of the caregiving process. However, a large body of accumulated research evidence has clearly demonstrated that culturally-defined values, norms, and roles are among the major determinants of the caregiving experience. This research is based mainly on cross-cultural comparisons between caregivers of minority ethnic groups residing in the West and the native Caucasian population. It has been supplemented, to a limited extent, by research carried out among caregivers belonging to different cultures and residing in their countries of origin. Most of this research has been carried out among caregivers of elderly people with dementia; other psychiatric disorders such as schizophrenia have received much less attention. Results of this research have documented important differences in caregiving experiences and outcomes across cultural and ethnic groups. Cultural factors which could mediate these differences have been identified, and theories, which could provide a coherent framework to understand these differences, proposed. Though limited by methodological difficulties, this research has provided important insights into the impact of cultural and ethnic factors on the whole spectrum of the caregiving experiences. An improved understanding of the area is, nevertheless, required because it will eventually help in devising appropriate ways to reduce burden and distress among caregivers from diverse ethnic and cultural groups.展开更多
This study aimed to clarify the characteristics of Japanese male family caregivers in terms of their sense of care burden, their capacity to deal with stress, and their subjective sense of well-being. A survey consist...This study aimed to clarify the characteristics of Japanese male family caregivers in terms of their sense of care burden, their capacity to deal with stress, and their subjective sense of well-being. A survey consisting of questionnaires and interviews was conducted from March to May 2014 in the subjects’ homes. Subjects were 27 Japanese males (the age range: 54 - 85) who provided home care for their family member. Caregivers who were good at relieving stress or who had a subjective sense of well-being were found to have a low care burden. The types and seriousness of diseases of the care recipients were not related to the caregivers’ sense of burden, capacity to deal with stress, or subjective sense of well-being. Based on the interview results, caregivers were found to have the following characteristics: they were particular about methods of care;they learned how to provide home care by themselves;they used their social intelligence in home care;they always provided home care while keeping the future in mind;and most notably, they considered home care to be their primary occupation. On the whole, male caregivers were found to alleviate the burdens of home care by making use of the nursing-care service systems that enabled them to relieve stress and enjoy their leisure time. Caregivers considered home care to be their occupation and used their past social experiences. The workforce helped them deal with the care recipients’ health conditions or day-to-day changes so that they could overcome the care burden.展开更多
Purpose: This study examined the level of burden and the extent of support on family caregivers of people living with AIDS (PLWHA) in Calabar, South East Nigeria. Methods: A mixed method with cross sectional approach ...Purpose: This study examined the level of burden and the extent of support on family caregivers of people living with AIDS (PLWHA) in Calabar, South East Nigeria. Methods: A mixed method with cross sectional approach was used. Purposive sampling technique guided the recruitment process and data collection methods included, semi-structured questionnaires and focusing group discussion. 260 respondents participated in the study. The quantitative data were mined with the aid of SPSS and the qualitative data were analysed with the aid of NVivo8 using thematic analysis. Results: Results indicated high level of burden with limited support to caregivers. A Chi-square value of 25.1 was obtained at P < 0.05, suggesting a significant relationship between availability of support and caregivers burden. This relationship was supported by the themes of physical, social, emotional and financial burden for the caregivers. Similarly, information on coping skills, emotional support, financial assistance and help with caregiving themes emerged for social support. Conclusion: In Nigeria, the burden of caring for HIV/AIDS patients has a remarkable impact on family caregivers. This calls for the development of policies that can systematically address the needs of family caregivers in order to ameliorate the negative consequences of caregiving for PLWHA.展开更多
BACKGROUND Cancer is a devastating and debilitating chronic disease that affects both patients and family members.Available evidence has confirmed that the care of chronically ill relatives by family members can be ve...BACKGROUND Cancer is a devastating and debilitating chronic disease that affects both patients and family members.Available evidence has confirmed that the care of chronically ill relatives by family members can be very challenging.This is because caregiving of cancer patients often presents a high level of burden on the caregivers.Consequently,this leads to a necessity to adopt coping mechanisms to cushion the effect of the burden experienced during caregiving.AIM To determine the burden experienced and coping strategies among caregivers of advanced cancer patients attending University of Calabar Teaching Hospital(UCTH),Cross River State,Nigeria.METHODS The study adopted a descriptive cross-sectional study design and the study population included informal family caregivers providing services to histologically diagnosed advanced cancer patients receiving treatment at the UCTH at the time of this survey.A researcher-developed structured questionnaire,a 22-item standardized validated Zarit Burden Interview(ZBI)and a modified 17-item Coping Orientation to Problems Experienced(COPE)Inventory were used to collect data from 250 eligible informal caregivers who were selected with regard to caregiver’s characteristics,caregivers’level of burden and caregiver’s coping strategies,respectively.Data gathered from the respondents were collated,coded and analyzed using Statistical Package for Social Sciences(SPSS version 24.0)software and Predictive Analytical Software(PAS version 19.0).Chi-square was used to test for association between categorical variables at the 0.05 level of significance.The results are presented in tables and charts.RESULTS The respondents consisted of more females 132(62.86%)than males 78(37.14%).The majority of respondents(46.2%)were aged between 31-50 years with a mean age of 35.9±18.1 years.The assessment of burden level revealed that 97 caregivers(46.19%)experienced severe burden,37(17.62%)experienced trivial or no burden,while 76(36.2%)perceived moderate burden.The coping strategies used by caregivers to ease the level of burden experienced during caregiving included;acceptance,reprioritization,appreciation,family,positive self-view and empathy.Also,it was documented that there was a strong association between caregivers’level of burden and coping strategies(P=0.030).Findings also showed that age(P=0.000),sex(P=0.000),educational status(P=0.000),functional ability(P=0.000),duration of care(P=0.000),desire to continue caregiving(P=0.000)and type of cancer(P=0.000)were statistically significantly associated with caregivers’coping strategies.CONCLUSION There is great recognition of the role of informal caregivers in improving the health of their relatives and family members who are chronically ill.It was recommended that support groups in collaboration with health care providers should organize a symposium for informal caregivers on the intricacies of caregiving in chronically ill patients.This would create a platform for experience sharing,information dissemination and health care professional-caregiver interaction to enhance positive caregiving outcomes.展开更多
<em>Background</em>: Almost 32.5 million people are diagnosed with cancer annually. The huge number of cancer patients with deteriorating health renders a far greater number of informal caregivers bearing ...<em>Background</em>: Almost 32.5 million people are diagnosed with cancer annually. The huge number of cancer patients with deteriorating health renders a far greater number of informal caregivers bearing the burden of care in different forms and magnitude. The main purpose of the study was to explore the types of burden perceived by the informal caregivers and the factors associated with the caregiving burden. <em>Methods</em>: A quantitative descriptive cross-sectional study design was adopted to answer the research questions from April to May 2016. Around 200 informal caregivers were recruited from one of the tertiary hospitals of Karachi, Pakistan. The modified ZBIS was used to collect data which was analyzed by using Chi-square test to find the associations between the demographic characteristics of informal caregivers and the perceived burden of care. <em>Results</em>: Findings of the study identified the employment status (P ≤ 0.020) and the religion of the informal caregivers (P ≤ 0.027) as significant, demographic variables. The functional level of care receivers was also found to be significant (P ≤ 0.002). The study also recognized four forms of burdens, with significant mean values, including financial (2.85), psychological (2.50), social (2.58), and physical (2.44). Most of the participants reported experiencing a moderate magnitude of burden, ranging from 40 - 60, on the scale of 0 - 80. <em>Conclusion</em>: The study highlighted four different forms of burdens, that is, financial, psychological, social, and physical, along with their associated demographic factors. Health care agencies and public health personnel should work with informal caregivers to reduce burden of care.展开更多
Objective: To investigate the status of caregiver burden and influencing factors among family caregivers in maintenance hemodialysis (MHD) patients under the background of coronavirus disease 2019, and to provide refe...Objective: To investigate the status of caregiver burden and influencing factors among family caregivers in maintenance hemodialysis (MHD) patients under the background of coronavirus disease 2019, and to provide references for nursing intervention. Methods: From May to August 2020, 237 convenient samples were recruited from the Hemodialysis Centers of The Renmin Hospital of Wuhan University and Zhongnan Hospital of Wuhan University. Questionnaires were conducted with the General Information Questionnaire, Zarit Burden Interview (ZBI), Sense of Coherence-13 (SOC-13) and Perceived Social Support Scale (PSSS). Multiple linear regression was used to analyze the influencing factors of caregiver burden. Results: The score of ZBI among the caregivers was (36.05 ± 14.09). The ZBI of family caregivers was negatively correlated with SOC-13 and PSSS (P < 0.01). Multiple regression results showed that professional status of MHD patients, activity of MHD patients, comprehensibility, manageability and other support were the main influencing factors of their caregiver burden (P < 0.01), which explained 44.4% of the variance. Conclusion: The caregiver burden among family caregivers of MHD patients was above average under the background of COVID-19, which indicated that they felt more burden in the process of caring. Medical staff could give targeted support and guidance in combination with their influencing factors to reduce their caregiver burden further.展开更多
As elderly people increasingly come to represent a higher proportion of the world’s population,various forms of dementia are becoming a significant chronic disease burden.The World Health Organization emphasizes deme...As elderly people increasingly come to represent a higher proportion of the world’s population,various forms of dementia are becoming a significant chronic disease burden.The World Health Organization emphasizes dementia care as a public health priority and calls for more support for family caregivers who commonly play a significant,central role in dementia care.Taking care of someone with dementia is a long-term responsibility that can be stressful and may lead to depression among family caregivers.Depression and related behavioral and cognitive changes among caregivers could in turn affect the status and prognosis of the dementia patient.This review article explores depression in dementia caregivers and summarizes proposed mechanisms,associated factors,management and research findings,and proposes future research directions.展开更多
We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers...We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers provide to their loved ones with AD. We obtained studies focusing on the care that these caregivers provide for their family members with AD. Our outcome of interest was level or quality of care and the independent variable was caregiver QoL. We extracted data in tabular form and used a narrative synthesis approach to describe our findings. Only one relevant study was included in the review. Overall, the evidence was equivocal regarding the associations between caregiver QoL and the level/quality of care in AD.展开更多
Based on prior research, we hypothesized that staff in an outpatient clinic caring for an HIV patient population might rely on religious and spiritual frameworks to cope with the strains of their work and that their r...Based on prior research, we hypothesized that staff in an outpatient clinic caring for an HIV patient population might rely on religious and spiritual frameworks to cope with the strains of their work and that their responses to a spiritual and religious survey might reflect work-related spiritual distress. Surveys were completed by 78.7% of staff (n = 59). All respondents scored in the "moderate"range for religious and spiritual well-being as well as existential satisfaction with living. The large majority agreed that the religious and spiritual concerns of patients have a place in patient care. Nurses, (88.2% of nurse respondents) viewed assessing the spiritual needs of patients as their responsibility, (p = 0.03). While 82% of HIV clinic respondents privately prayed for patients always, often or sometimes, this did not include physicians. Physicians in this clinic setting appeared to be less spiritual and religious, based on their survey responses, than coworkers and than US physicians in general. The majority of clinic physicians (78%) believed that God does not suffer with the suffering patients, in contrast to the majority of support staff (69%) and nearly half of the nurses, who believed that God does suffer with them, (p = 0.018). Contrary to our expectation, respondents did not report work-related spiritual distress, which may be related to improved therapies that can prolong and improve patients’ lives. Survey data revealed, however, a surprising level of engagement in and reliance on spiritual and religious frameworks among nurses and support staff. Whether the absence of measured spiritual distress is linked, in a causal rather than random manner, to spiritual and religious reliance by certain of these health care providers, is unknown.展开更多
Objectives:Chronic renal failure affects the physiological,psychological,functional ability,and independent status of the patient,which might result in a burden to the family members caring for them.The objective of t...Objectives:Chronic renal failure affects the physiological,psychological,functional ability,and independent status of the patient,which might result in a burden to the family members caring for them.The objective of the study was to identify caregivers'level of burden and establish the impact of educational intervention programs on caregiving outcomes.Methods:This was a one-group pre-test post-test study conducted between April and August 2017 on family caregivers of hemodialysis patients.A convenient sample of 169 caregivers was used.A sociodemographic questionnaire,the OBCS,and BCOS were utilized for data collection,which occurred at baseline and two weeks post-intervention.The collected data were analyzed using SPSS where t-test determined the impact of the intervention.Results:Caregivers were found to be moderately burdened(M=2.73,SD=0.23)and their lives had changed for the worst as a result of caregiving(M=3.17,SD=5.89).There were significant differences in caregiving outcome scores before and after the intervention(P<0.05).Conclusion:Caring for patients receiving hemodialysis adds extra responsibilities to the caregivers'schedule thus leaving them substantially burdened.Educating caregivers on the required care eased their burden and improved caregiving outcomes.Recommendations are made that healthcare professionals should assess caregiver burden,and address their physical and mental health needs.Caregivers should also be regularly educated on the regular caregiving tasks to ease their burden.展开更多
This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress an...This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress and utilisation of formal community support services. The findings suggest that carer stress varies among individuals, but that a predominant source of stress is the unremitting burden experienced when caring for someone with dementia. Improved utilisation of support services in rural areas and tailoring services to individual carers dependent on the source of stress is recommended.展开更多
In many instances, care for the elderly, especially in long-term care institutions, is provided under minimal supervision by caregivers who are lay people. This can lead to poor quality care or neglect of the elderly....In many instances, care for the elderly, especially in long-term care institutions, is provided under minimal supervision by caregivers who are lay people. This can lead to poor quality care or neglect of the elderly. The research question was: “How competent are lay caregivers for the elderly in old age homes, who often lack the opportunity for training to improve their knowledge and skills, in delivering care to the elderly? The aims of the study were to explore and describe the experiences of both the caregivers and the elderly in respect of caring for the elderly in old age homes. The objectives of the study were to explore and describe the experiences of the caregivers and the elderly with respect to caring for the elderly and in respect of nursing care they received. A qualitative, explorative, descriptive, contextual and phenomenology design was used to perform this study. In the situational analysis, the experiences and needs of the caregivers were described. Themes in terms of interpersonal relationships that could be positive or negative regarding the elderly were identified. These included lack of regular in-service training sessions for caregivers. Likewise, sub-themes like communication, support and caring for elderly people were revealed. Inadequate knowledge of caregivers in caring procedures, a shortage of staff, equipment and absence of policies which should support and guide the work of caregivers impacts negatively on the care of the elderly. From the experiences of the elderly and caregivers, the competencies under scrutiny emerged and were measured qualitatively by the perceptions of the elderly, in respect of the caring they were exposed to.展开更多
Background: Many studies have been underlined as care giving for people with Alzheimer’s disease (AD) is highly stressful and has significant negative consequences, such as anxiety and depression. Objective: The spec...Background: Many studies have been underlined as care giving for people with Alzheimer’s disease (AD) is highly stressful and has significant negative consequences, such as anxiety and depression. Objective: The specific aim of our study is to establish whether a difference exists in the prevalence of depression of family caregivers of Alzheimer’s disease patients and healthy subjects not caregiver. Methods: Study group (n = 60) consists of caregivers of patients affected by Alzheimer’s disease, whereas control group (n = 120) consists of healthy individuals who are not care giving (from at least 5 years). All the subjects were subdivided on the basis of the following independent variables: sex, age, marital status and educational level. The subjects of study and control groups studied have filled in the following tests: IPAT CDQ e IPAT ASQ Tests by Cattell which describe depression and anxiety. Such tests have been validated on the adult and elderly Italian population. Statistical analysis: Student t test has been applied for the comparison between experimental and control groups. Results: The caregivers show higher levels of anxiety (medium to high, P < 0.001) and depression in comparison to the group of control (medium to high, P < 0.001). This result indicates the caregiver shows serious depression. Conclusions: The high levels of depression and anxiety suggest the following considerations: interventions of social and psychological support are fundamental not only to maintain the patient in the family nucleus but also to maintain the caregiver’s psychological health.展开更多
文摘The physical,emotional,and caregiving quality of caregivers for children with malignant solid tumors is significantly influenced by mental toughness.The definition of mental toughness,study methods,primary influencing factors,and intervention strategies for the mental toughness of caregivers of children with malignant solid tumors will be examined in this paper.To improve the mental toughness of caregivers of children with malignant solid tumors,it is recommended that future studies enhance the number of intervention research methods and establish particular evaluation tools.
文摘BACKGROUND Children with thalassemia need care from the first years of life owing to the physical and psychological effects of their disorder.Thalassemia is a concern not only for the children’s physical health but also the mental health of themselves and their caregivers.AIM To screen the psychosocial problems and assessment of psychiatric morbidities among thalassaemic children and their caretakers,along with an assessment of caregiver burden in them.METHODS In this observational cross-sectional study,children with transfusion-dependent thalassemia,were included and were assessed for psychiatric morbidity and global functioning.Their parents were assessed for psychiatric morbidity and the caregiver burden they faced.All the parents completed two different questionnaires to assess their knowledge about the psycho-social functioning[using Pediatric Symptom Checklist-35(PSC-35)]of their children and the level of the burden faced by them by Caregiver Burden Scale(CBS).RESULTS A total of 46 children(28 boys and 18 girls)with transfusion-dependent thalassemia with a mean age of 8.83±2.70 years and 46 parents(12 fathers and 34 mothers)were included in this study.More than 32 children had some psychosocial problems on screening by PSC-35.On assessment by CBS moderate caregiver burden was perceived in domains of general strain,isolation,disappointment,emotional involvement,and environment.A total of 65.3%of children and 62.7%of parents were diagnosed with psychiatric problems.CONCLUSION Thalassemia affects not only the persons with the disorder but also their caregivers in several aspects,including their psychosocial well-being.This study emphasizes the role of a supportive group in the psychological well-being of caregivers,which could be used to prevent the pathological effects of caregiver burden and enhance their psychological well-being through counselling.
文摘Background:This study explored the personal recovery of consumers and their caregivers receiving the strength-based family intervention.Method:A three-year project was implemented with 43 dyads from 5 community psychiatric rehabilitation agencies in northern,central,and Southern Taiwan.This paper presents qualitative analysis with a focus on describing the experiences of personal recovery.To gain a deeper understanding of the participants’personal experiences and perspectives,semi-structured in-depth interviews were conducted on three occasions(six months after the inception of the experiment,18 months after,and when the participants left the services of this study).Over the three occasions,a total of 27 consumers and 28 caregivers were interviewed.Data analysis was conducted based on grounded theory.Results:Consumers expressed positive experiences in the domain of the recovery process(positive sense of self,taking responsibility,and better coping)and on the objective indicators of recovery(functioning,interpersonal interaction,and family relationship).Caregivers experienced lessened psychological burdens.They also revealed improvements to their sense of self(recovery process)and subjective indicators of recovery outcomes,including feeling empowered and having a better quality of life.Moreover,they had better interaction with consumers(objective domain of recovery).Conclusion:These findings suggest that the strength-based perspective is an acceptable,culturally-compatible approach among Chinese mental health consumers and their caregivers.The investigators suggest that additional resources would be necessary to support a change in the service system in Taiwan so that family-based services can be provided to promote the recovery of mental health consumers and their family caregivers.
文摘Caring for a person with Parkinson’s disease (PD) extends far beyond the ordinary exchange of assistance among people in a close relationship. Caregivers must learn to cope with the patient’s increasing disability and loss of independence. The aim of this systematic review was to critically assess and summarize the evidence of the influence of the demographic and clinical characteristics of patients with PD on caregiver burden by means of a caregiver burden instrument. In order to identify articles, electronic databases and reference lists were searched using the search word “Parkinson’s disease” in combination with “caregiver” or “carer” and with “burden” or “distress” or “stress” or “strain”. Thirty one articles were deemed eligible for inclusion. The methodological quality of the studies was evaluated. No studies were excluded due to low quality. The results revealed similar associations among caregiver burden, demographic variables and patient characteristics, across different caregiver burden instruments and various clinical scales. Higher PD stage and functional disability are the non-motor characteristics that contribute the most to caregiver burden. However, when comparing the impact of patient motor and non-motor symptoms, several studies found that mental symptoms had a stronger impact on caregiver burden than motor symptoms. No association was observed between caregiver burden and patient and caregiver demographics with the exception of the sub-scale analysis of caregiver burden in various age groups. Interpreting the results of studies that employ a range of different clinical assessment scales and burden instruments makes it challenging to provide a valid summary of caregiver burden in PD. The most commonly used analysis methods contribute little information about burden variation across caregiver groups or which areas are the most burdensome for caregivers. There is a need for a more uniform use of recommended instruments and for longitudinal studies.
基金supported by Jiangxi Province Health Department(20133061).The authors declare no conflict of interest.
文摘Purpose:The level of care burden experienced by caregivers of patients with spinal cord injury and their coping style were evaluated in order to identify ways to improve their capacity to respond and reduce the care burden.Methods:A convenience sampling method was used to select 150 spinal cord injury patients who were discharged from the Second and the Third Affiliated Hospital of Nanchang University and their primary caregivers.The Chinese version of the Zarit Caregiver Burden Interview and the Simplified Coping Style Questionnaire were distributed to assess caregiver burden and coping strategies.Results:The care burden score of the caregivers of patients with spinal cord injury was 52.9111.56 points.Eighty-eight percent of caregivers reported moderate or severe care burden levels.The largest proportion of caregivers were female spouses,who were less likely to use an active coping strategy.A negative coping strategy was more frequently used by caregivers compared to healthy adults,and was positively correlated with burden of care.In contrast,a negative correlation was found between the care burden and an active coping style.Conclusion:Primary caregivers of spinal cord injury patients report a heavy burden of care.As active coping strategies are more beneficial,medical care providers should encourage caregivers to make more use of these coping styles to promote physical and mental health for themselves,their patients and their family,as well as to improve the quality of care provided.
文摘The aim of the present review was to examine objective and subjective burdens in primary caregivers(usually family members) of patients with bipolar disorder(BD) and to list which symptoms of the patients are considered more burdensome by the caregivers. In order to provide a critical review about caregiver's burden in patients with bipolar disorder, we performed a detailed Pub Med, Bio Med Central, ISI Web of Science, Psyc INFO, Elsevier Science Direct and Cochrane Library search to identify all papers and book chapters in English published during the period between 1963 and November 2011. The highest levels of distress were caused by the patient's behavior and the patient's role dysfunction(work, education and social relationships). Furthermore, the caregiving role compromises other social roles occupied by the caregiver, becoming part of the heavy social cost of bipolar affective disorder. There is a need to better understand caregivers' views and personal perceptions of the stresses and demands arising from caring for someone with BD in order to develop practical appropriate interventions and to improve the training of caregivers.
基金Funding was provided for this manuscript:We receive the fund of Science and technology department of Guangdong province,NO.2014A020212366.
文摘Objective:Research suggests that caregivers of children with asthma experience a substantial amount of stress,though no comprehensive study examines this problem.Here we both quantitatively and qualitatively examined the burden on caregivers of children with asthma.Methods:Surveys were administered to 138 caregivers of asthmatic children by convenience sampling.The Zarit Caregiver Burden Interview(ZBI)was used to assess the degree of caregiver burden.In addition,13 qualitative semi-structured interviews were carried out via purposive sampling and were used to explore the perception of caregivers.SPSS and content analysis were used to analyze quantitative and qualitative data,respectively.Results:We found that caregiver burden(mean=31.56±14.19)ranged from 24%with no or mild burden,52%with mild to moderate burden,22%with moderate to severe burden and 2%with very severe burden.Caregiver burden was also assessed as 5 different dimensions.Selfcriticism ranked most burdensome(2.09±1.05),followed by sacrifice(1.57±0.94),embarrassment/anger(1.30±0.80),dependency(1.21±0.77),and lastly,loss of control(1.20±0.84).The highest individually scored item on the ZBI was“fear of the future of the relative”(mean=3.04).Interviews of caregiver burden were summarized into three main themes,namely:1)life is too chaotic;2)negative emotions;and 3)gaps in themedical support system.Conclusions:These findings expand our understanding about the burden caregivers of children with asthma face,and may help to propose targeted strategies to help caregivers adapt to their roles,and maintain and promote the health of themselves and their families.
文摘Caring for a mentally ill family member is well known to be mostly a stressful, distressing and burdensome experience. The dominant model for examining the process of caregiving has been the stress-appraisalcoping paradigm, in which interactions between stressors, appraisals, coping, and various mediators produce the eventual outcomes in terms of distress or wellbeing among caregivers. Ethnic and cultural factors have traditionally received the least research attention as mediators of the caregiving process. However, a large body of accumulated research evidence has clearly demonstrated that culturally-defined values, norms, and roles are among the major determinants of the caregiving experience. This research is based mainly on cross-cultural comparisons between caregivers of minority ethnic groups residing in the West and the native Caucasian population. It has been supplemented, to a limited extent, by research carried out among caregivers belonging to different cultures and residing in their countries of origin. Most of this research has been carried out among caregivers of elderly people with dementia; other psychiatric disorders such as schizophrenia have received much less attention. Results of this research have documented important differences in caregiving experiences and outcomes across cultural and ethnic groups. Cultural factors which could mediate these differences have been identified, and theories, which could provide a coherent framework to understand these differences, proposed. Though limited by methodological difficulties, this research has provided important insights into the impact of cultural and ethnic factors on the whole spectrum of the caregiving experiences. An improved understanding of the area is, nevertheless, required because it will eventually help in devising appropriate ways to reduce burden and distress among caregivers from diverse ethnic and cultural groups.
文摘This study aimed to clarify the characteristics of Japanese male family caregivers in terms of their sense of care burden, their capacity to deal with stress, and their subjective sense of well-being. A survey consisting of questionnaires and interviews was conducted from March to May 2014 in the subjects’ homes. Subjects were 27 Japanese males (the age range: 54 - 85) who provided home care for their family member. Caregivers who were good at relieving stress or who had a subjective sense of well-being were found to have a low care burden. The types and seriousness of diseases of the care recipients were not related to the caregivers’ sense of burden, capacity to deal with stress, or subjective sense of well-being. Based on the interview results, caregivers were found to have the following characteristics: they were particular about methods of care;they learned how to provide home care by themselves;they used their social intelligence in home care;they always provided home care while keeping the future in mind;and most notably, they considered home care to be their primary occupation. On the whole, male caregivers were found to alleviate the burdens of home care by making use of the nursing-care service systems that enabled them to relieve stress and enjoy their leisure time. Caregivers considered home care to be their occupation and used their past social experiences. The workforce helped them deal with the care recipients’ health conditions or day-to-day changes so that they could overcome the care burden.
文摘Purpose: This study examined the level of burden and the extent of support on family caregivers of people living with AIDS (PLWHA) in Calabar, South East Nigeria. Methods: A mixed method with cross sectional approach was used. Purposive sampling technique guided the recruitment process and data collection methods included, semi-structured questionnaires and focusing group discussion. 260 respondents participated in the study. The quantitative data were mined with the aid of SPSS and the qualitative data were analysed with the aid of NVivo8 using thematic analysis. Results: Results indicated high level of burden with limited support to caregivers. A Chi-square value of 25.1 was obtained at P < 0.05, suggesting a significant relationship between availability of support and caregivers burden. This relationship was supported by the themes of physical, social, emotional and financial burden for the caregivers. Similarly, information on coping skills, emotional support, financial assistance and help with caregiving themes emerged for social support. Conclusion: In Nigeria, the burden of caring for HIV/AIDS patients has a remarkable impact on family caregivers. This calls for the development of policies that can systematically address the needs of family caregivers in order to ameliorate the negative consequences of caregiving for PLWHA.
文摘BACKGROUND Cancer is a devastating and debilitating chronic disease that affects both patients and family members.Available evidence has confirmed that the care of chronically ill relatives by family members can be very challenging.This is because caregiving of cancer patients often presents a high level of burden on the caregivers.Consequently,this leads to a necessity to adopt coping mechanisms to cushion the effect of the burden experienced during caregiving.AIM To determine the burden experienced and coping strategies among caregivers of advanced cancer patients attending University of Calabar Teaching Hospital(UCTH),Cross River State,Nigeria.METHODS The study adopted a descriptive cross-sectional study design and the study population included informal family caregivers providing services to histologically diagnosed advanced cancer patients receiving treatment at the UCTH at the time of this survey.A researcher-developed structured questionnaire,a 22-item standardized validated Zarit Burden Interview(ZBI)and a modified 17-item Coping Orientation to Problems Experienced(COPE)Inventory were used to collect data from 250 eligible informal caregivers who were selected with regard to caregiver’s characteristics,caregivers’level of burden and caregiver’s coping strategies,respectively.Data gathered from the respondents were collated,coded and analyzed using Statistical Package for Social Sciences(SPSS version 24.0)software and Predictive Analytical Software(PAS version 19.0).Chi-square was used to test for association between categorical variables at the 0.05 level of significance.The results are presented in tables and charts.RESULTS The respondents consisted of more females 132(62.86%)than males 78(37.14%).The majority of respondents(46.2%)were aged between 31-50 years with a mean age of 35.9±18.1 years.The assessment of burden level revealed that 97 caregivers(46.19%)experienced severe burden,37(17.62%)experienced trivial or no burden,while 76(36.2%)perceived moderate burden.The coping strategies used by caregivers to ease the level of burden experienced during caregiving included;acceptance,reprioritization,appreciation,family,positive self-view and empathy.Also,it was documented that there was a strong association between caregivers’level of burden and coping strategies(P=0.030).Findings also showed that age(P=0.000),sex(P=0.000),educational status(P=0.000),functional ability(P=0.000),duration of care(P=0.000),desire to continue caregiving(P=0.000)and type of cancer(P=0.000)were statistically significantly associated with caregivers’coping strategies.CONCLUSION There is great recognition of the role of informal caregivers in improving the health of their relatives and family members who are chronically ill.It was recommended that support groups in collaboration with health care providers should organize a symposium for informal caregivers on the intricacies of caregiving in chronically ill patients.This would create a platform for experience sharing,information dissemination and health care professional-caregiver interaction to enhance positive caregiving outcomes.
文摘<em>Background</em>: Almost 32.5 million people are diagnosed with cancer annually. The huge number of cancer patients with deteriorating health renders a far greater number of informal caregivers bearing the burden of care in different forms and magnitude. The main purpose of the study was to explore the types of burden perceived by the informal caregivers and the factors associated with the caregiving burden. <em>Methods</em>: A quantitative descriptive cross-sectional study design was adopted to answer the research questions from April to May 2016. Around 200 informal caregivers were recruited from one of the tertiary hospitals of Karachi, Pakistan. The modified ZBIS was used to collect data which was analyzed by using Chi-square test to find the associations between the demographic characteristics of informal caregivers and the perceived burden of care. <em>Results</em>: Findings of the study identified the employment status (P ≤ 0.020) and the religion of the informal caregivers (P ≤ 0.027) as significant, demographic variables. The functional level of care receivers was also found to be significant (P ≤ 0.002). The study also recognized four forms of burdens, with significant mean values, including financial (2.85), psychological (2.50), social (2.58), and physical (2.44). Most of the participants reported experiencing a moderate magnitude of burden, ranging from 40 - 60, on the scale of 0 - 80. <em>Conclusion</em>: The study highlighted four different forms of burdens, that is, financial, psychological, social, and physical, along with their associated demographic factors. Health care agencies and public health personnel should work with informal caregivers to reduce burden of care.
基金This research has received support from Health Commission of Hubei Provincial(No.LHHL2020ZD-02)Renmin Hospital of Wuhan University(No.HL2021ZC-02).
文摘Objective: To investigate the status of caregiver burden and influencing factors among family caregivers in maintenance hemodialysis (MHD) patients under the background of coronavirus disease 2019, and to provide references for nursing intervention. Methods: From May to August 2020, 237 convenient samples were recruited from the Hemodialysis Centers of The Renmin Hospital of Wuhan University and Zhongnan Hospital of Wuhan University. Questionnaires were conducted with the General Information Questionnaire, Zarit Burden Interview (ZBI), Sense of Coherence-13 (SOC-13) and Perceived Social Support Scale (PSSS). Multiple linear regression was used to analyze the influencing factors of caregiver burden. Results: The score of ZBI among the caregivers was (36.05 ± 14.09). The ZBI of family caregivers was negatively correlated with SOC-13 and PSSS (P < 0.01). Multiple regression results showed that professional status of MHD patients, activity of MHD patients, comprehensibility, manageability and other support were the main influencing factors of their caregiver burden (P < 0.01), which explained 44.4% of the variance. Conclusion: The caregiver burden among family caregivers of MHD patients was above average under the background of COVID-19, which indicated that they felt more burden in the process of caring. Medical staff could give targeted support and guidance in combination with their influencing factors to reduce their caregiver burden further.
文摘As elderly people increasingly come to represent a higher proportion of the world’s population,various forms of dementia are becoming a significant chronic disease burden.The World Health Organization emphasizes dementia care as a public health priority and calls for more support for family caregivers who commonly play a significant,central role in dementia care.Taking care of someone with dementia is a long-term responsibility that can be stressful and may lead to depression among family caregivers.Depression and related behavioral and cognitive changes among caregivers could in turn affect the status and prognosis of the dementia patient.This review article explores depression in dementia caregivers and summarizes proposed mechanisms,associated factors,management and research findings,and proposes future research directions.
文摘We reviewed the literature to examine whether an association exists between the quality of life (QoL) of primary informal Alzheimer's disease (AD) caregivers and the level and quality of care that these caregivers provide to their loved ones with AD. We obtained studies focusing on the care that these caregivers provide for their family members with AD. Our outcome of interest was level or quality of care and the independent variable was caregiver QoL. We extracted data in tabular form and used a narrative synthesis approach to describe our findings. Only one relevant study was included in the review. Overall, the evidence was equivocal regarding the associations between caregiver QoL and the level/quality of care in AD.
文摘Based on prior research, we hypothesized that staff in an outpatient clinic caring for an HIV patient population might rely on religious and spiritual frameworks to cope with the strains of their work and that their responses to a spiritual and religious survey might reflect work-related spiritual distress. Surveys were completed by 78.7% of staff (n = 59). All respondents scored in the "moderate"range for religious and spiritual well-being as well as existential satisfaction with living. The large majority agreed that the religious and spiritual concerns of patients have a place in patient care. Nurses, (88.2% of nurse respondents) viewed assessing the spiritual needs of patients as their responsibility, (p = 0.03). While 82% of HIV clinic respondents privately prayed for patients always, often or sometimes, this did not include physicians. Physicians in this clinic setting appeared to be less spiritual and religious, based on their survey responses, than coworkers and than US physicians in general. The majority of clinic physicians (78%) believed that God does not suffer with the suffering patients, in contrast to the majority of support staff (69%) and nearly half of the nurses, who believed that God does suffer with them, (p = 0.018). Contrary to our expectation, respondents did not report work-related spiritual distress, which may be related to improved therapies that can prolong and improve patients’ lives. Survey data revealed, however, a surprising level of engagement in and reliance on spiritual and religious frameworks among nurses and support staff. Whether the absence of measured spiritual distress is linked, in a causal rather than random manner, to spiritual and religious reliance by certain of these health care providers, is unknown.
文摘Objectives:Chronic renal failure affects the physiological,psychological,functional ability,and independent status of the patient,which might result in a burden to the family members caring for them.The objective of the study was to identify caregivers'level of burden and establish the impact of educational intervention programs on caregiving outcomes.Methods:This was a one-group pre-test post-test study conducted between April and August 2017 on family caregivers of hemodialysis patients.A convenient sample of 169 caregivers was used.A sociodemographic questionnaire,the OBCS,and BCOS were utilized for data collection,which occurred at baseline and two weeks post-intervention.The collected data were analyzed using SPSS where t-test determined the impact of the intervention.Results:Caregivers were found to be moderately burdened(M=2.73,SD=0.23)and their lives had changed for the worst as a result of caregiving(M=3.17,SD=5.89).There were significant differences in caregiving outcome scores before and after the intervention(P<0.05).Conclusion:Caring for patients receiving hemodialysis adds extra responsibilities to the caregivers'schedule thus leaving them substantially burdened.Educating caregivers on the required care eased their burden and improved caregiving outcomes.Recommendations are made that healthcare professionals should assess caregiver burden,and address their physical and mental health needs.Caregivers should also be regularly educated on the regular caregiving tasks to ease their burden.
文摘This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress and utilisation of formal community support services. The findings suggest that carer stress varies among individuals, but that a predominant source of stress is the unremitting burden experienced when caring for someone with dementia. Improved utilisation of support services in rural areas and tailoring services to individual carers dependent on the source of stress is recommended.
文摘In many instances, care for the elderly, especially in long-term care institutions, is provided under minimal supervision by caregivers who are lay people. This can lead to poor quality care or neglect of the elderly. The research question was: “How competent are lay caregivers for the elderly in old age homes, who often lack the opportunity for training to improve their knowledge and skills, in delivering care to the elderly? The aims of the study were to explore and describe the experiences of both the caregivers and the elderly in respect of caring for the elderly in old age homes. The objectives of the study were to explore and describe the experiences of the caregivers and the elderly with respect to caring for the elderly and in respect of nursing care they received. A qualitative, explorative, descriptive, contextual and phenomenology design was used to perform this study. In the situational analysis, the experiences and needs of the caregivers were described. Themes in terms of interpersonal relationships that could be positive or negative regarding the elderly were identified. These included lack of regular in-service training sessions for caregivers. Likewise, sub-themes like communication, support and caring for elderly people were revealed. Inadequate knowledge of caregivers in caring procedures, a shortage of staff, equipment and absence of policies which should support and guide the work of caregivers impacts negatively on the care of the elderly. From the experiences of the elderly and caregivers, the competencies under scrutiny emerged and were measured qualitatively by the perceptions of the elderly, in respect of the caring they were exposed to.
文摘Background: Many studies have been underlined as care giving for people with Alzheimer’s disease (AD) is highly stressful and has significant negative consequences, such as anxiety and depression. Objective: The specific aim of our study is to establish whether a difference exists in the prevalence of depression of family caregivers of Alzheimer’s disease patients and healthy subjects not caregiver. Methods: Study group (n = 60) consists of caregivers of patients affected by Alzheimer’s disease, whereas control group (n = 120) consists of healthy individuals who are not care giving (from at least 5 years). All the subjects were subdivided on the basis of the following independent variables: sex, age, marital status and educational level. The subjects of study and control groups studied have filled in the following tests: IPAT CDQ e IPAT ASQ Tests by Cattell which describe depression and anxiety. Such tests have been validated on the adult and elderly Italian population. Statistical analysis: Student t test has been applied for the comparison between experimental and control groups. Results: The caregivers show higher levels of anxiety (medium to high, P < 0.001) and depression in comparison to the group of control (medium to high, P < 0.001). This result indicates the caregiver shows serious depression. Conclusions: The high levels of depression and anxiety suggest the following considerations: interventions of social and psychological support are fundamental not only to maintain the patient in the family nucleus but also to maintain the caregiver’s psychological health.