Levels Of Care Burden Research Articles

Analysis on the level of care burden and its influencing factors in caregivers of patients with intracranial aneurysms

Analysis on the level of care burden and its influencing factors in caregivers of patients with intracranial aneurysms

Care Burden in Informal Caregivers of Hemodialysis Patients: A systematic review and meta-analysis study

Background: Correct assessment of care burden in informal care providers to hemodialysis patients such as family members has a crucial role in promoting their physical and mental health, so this study was conducted to determine care burden in informal caregivers of hemodialysis patients. Methods: This systematic review and meta-analysis was performed based on the systematic review meta-analysis and reporting system. To access relevant studies in the field, databases of Medline via PubMed, SCOPUS, ProQuest, SID, Embase and Magiran databases were searched with keywords assigned and using AND & OR operators until 1th August, 2019. After eliminating duplicates and primary and secondary screening of the articles, finally 8 studies entered the meta-analysis process. Cochran test and I2 index were used to determine the heterogeneity of the studies. Random Effects Model was used to estimate pooled mean. Egger's tests were used to evaluate diffusion bias. Results: The level of care burden in informal caregivers of hemodialysis patients varied from 1.7 to 54.01 in 8 studies with a sample size of 651. The majority of caregivers were spouses of patients and their mean age ranged from 32 to 51 years. Based on the cumulative graph, the mean total effect for care burden index in caregivers of hemodialysis patients in the studies was estimated to be 8.918 (14.3-454.381) with 95% confidence interval based on random effect model. Conclusion: Considering the care burden in caregivers of hemodialysis patients and its adverse effects, it is recommended to pay more attention to the health of caregivers as hidden patients and appropriate strategies should be considered to improve their quality of life.

An analysis of carer burden among family carers of people with and without dementia in Ireland.

Despite the policy relevance of carer burden, limited research focuses on family carers' experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (-6.95 ppts and -3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

Predictors of Caregiver Burden among Parents of Children with Cancer

Background: Cancer is one of the most common diseases in children. Cancer in children can cause many problems for parents, and impose heavy care burden on them, which can lead to negative health consequences. The aim of this study was to determine caregiving burden and relevant influential factors among parents of children with cancer. Materials and Methods: This cross-sectional descriptive study was done on 125 parents of children with cancer in oncology department of Shohada Hospital, Tehran, Iran, during March to August 2017. Caregiving burden was measured using the Caregiver Burden Scale. Descriptive statistics, independent-samples T test, one-way ANOVA, Pearson’s correlation analysis, and multivariate linear regression analysis (stepwise method) were used in data analysis with SPSS software (v.19). Results: The mean score of parents’ care burden was 52.76 ± 10. Moreover, 17.6%, 71.2% and 11.2% of parents had low, moderate, and high care burden, respectively. Regression analyses indicated that the factors associated with care burden were cancer type (Acute myeloid leukemia (β=0.36, p<0.001) and Ewing sarcoma (β=0.16, p=0.007)), the number of hospitalization (β=0.38, p<0.001), duration of disease (β=-0.31, p<0.001), parent’s age (β=-0.29, p<0.001), parent’s income (β=-0.23, p<0.001), and child’s age (β=0.24, p<0.001). These variables accounted for 65% of the variance in care burden. Conclusion: The result of this study demonstrated that most of parents of children with cancer had moderate levels of care burden. Different variables increased care burden in parents. Therefore, planning for holistic interventions to reduce care burden in parents and improve quality of care is necessary.

Care Burden in Parents of Children with Leukemia: A Cross-Sectional Study in the West of Iran

Background Parental caregiver burden is an important priority in children's oncology researches. The present study aimed to determine care burden among parents of children with leukemia. Materials and Methods This cross-sectional study was conducted among a total of 209 parents of children with leukemia who referred to Dr. Mohammad Kermanshahi Hospital, Kermanshah city, in the West of Iran, in 2018. Parents were surveyed with the caregiver burden scale and baseline characteristics items based on interview. Pearson correlation, t-test, and ANOVA analysis at 95% significant level were used in data analysis with SPSS software version16.0. Results The mean of care burden score was 56.43+9.32 and ranged from 0 to 88. 10.7%, 79.7%, and 9.6% of parents had low, moderate and high care burden, respectively.The higher care burden score was associated with the lower age of parents (r= -0.255, P < 0.001), higher educational level (P=0.028), and better economic status (P=0.001). Conclusion Our findings indicated that most of the parents of children with leukemia had moderate-to-high levels of care burden. Thus, health care providers are expected to be more available to respond to their requests and pay more attention to planning educational programs.

The association between gratitude and burden in Australian mental health carers: a cross-sectional study.

The level of carer burden has increased as carers take on more responsibility for mental health consumers as a result of the contemporary shift in the delivery of services from institutional to community settings. Interventions are required to mitigate mental health carer burden. Therefore, we examined the association between dispositional gratitude and burden in a cross-sectional survey of 231 Australian mental health carers. Dispositional gratitude was assessed by the S-GRAT, and carer burden was measured using the Involvement Evaluation Questionnaire. The results of a general linear model demonstrated that higher levels of a lack of sense of deprivation were significantly associated with lower levels of tension, worrying and urging. In contrast, higher levels of simple appreciation were significantly associated with higher levels of supervision, worrying and urging. Our findings highlight that gratitude interventions should focus on promoting a lack of sense of deprivation and appreciation of others in order to reduce mental health carer burden.

Advance care planning in brain tumour survivors: A prospective study

ACP is the process of planning of planning for future healthcare to guide clinical decision making when one is unable to communicate decisions due to lack of capacity. This study explored the perspectives of brain tumour (BT) patients in discussing ACP, symptom profile, physical and functional status, quality of life (QoL), level of coping and carer burden. A prospective cohort study with semi-structured interviews regarding ACP for BT patients in hospital and community was conducted. Validated assessment tools measured coping strategies, QoL and carer burden. Interview ACP transcripts were analyzed, coded and interpreted using qualitative analytic techniques for thematic analyses. Participants’ ( n = 36) mean age was 47 years (range 20–69 years), with median time since diagnosis of 3.9 years, and majority (70%) had glioblastoma multiforme (GBM). Fatigue was the most common symptom reported by 89% participants, followed by pain (53%) and cognitive impairment (39%). Overall, participants indicated good QoL and used more problem-focused coping strategies including ‘acceptance’ and ‘positive reframing’. There was a ‘moderate’ level of carer burden. Thematic analyses indicated participants had limited understanding of ACP, and lack of such discussions with healthcare professionals. Majority preferred dedicated sessions by trained healthcare professionals especially medical staff. The low uptake of ACP amongst BT patients’ highlights need for increased awareness of ACP in clinical practice as it has an important role in enhancing patient autonomy and delivery of quality end-of-life care. The neuropalliative-rehabilitation model of care integrates care with treating teams and can provide timely ACP information to BT patients, with the need for multifaceted system-wide interventions in implementing ACP.

Advance Care Planning in brain tumour survivors: a prospective study

Purpose: Advance care planning (ACP) is the process of planning for future healthcare to guide clinical decision making when one is unable to communicate decisions due to lack of capacity. This study explored the perspectives of brain tumour (BT) patients in discussing ACP, symptom profile, physical and functional status, quality of life (QoL), level of coping and carer burden. Methods: A prospective cohort study with semi-structured interviews regarding ACP for BT patients in hospital and community. Validated assessment tools measured coping strategies, QoL and carer burden. Interview ACP transcripts were analyzed, coded and interpreted using qualitative analytic techniques for thematic analyses. Results: Participants’ (n=36) mean age was 47 years (range 20-69 years), with median time since diagnosis of 3.9 years and majority (70%) had glioblastoma multiforme (GBM). Fatigue was the most common symptom reported by 89% participants, followed by pain (53%) and cognitive impairment (39%). Overall, participants indicated good QoL and used more problem-focused coping strategies including ‘acceptance’ and ‘positive reframing’. There was a ‘moderate’ level of carer burden. Thematic analyses indicated participants had limited understanding of ACP, and lack of such discussions with healthcare professionals. Majority preferred dedicated sessions by trained healthcare professionals especially medical staff. Conclusion: The low uptake of ACP amongst BT patients’ highlights need for increased awareness of ACP in clinical practice as it has an important role in enhancing patient autonomy and delivery of quality end-of-life care. The neuropalliative-rehabilitation model of care integrates care with treating teams and can provide timely ACP information to BT patients, with the need for multifaceted system-wide interventions in implementing ACP

WHAT ARE THE PERCEPTIONS OF DEMENTIA CAREGIVING AND HELP-SEEKING AMONG PROSPECTIVE KOREAN CAREGIVERS?

Providing care to a family member with dementia is associated with many physical and emotional issues, which include social isolation and financial burdens. Immigrant caregivers, especially in the Korean community, are not an exception in this matter. Despite the increasing number of Korean immigrants and Korean Canadians with family caregivers in Canada, little research has been done to explore how people with multi- or cross-cultural values, specifically Koreans, understand dementia caregiving, and what their help-seeking patterns are in Canada. The purpose of this research is to examine: 1) How do Koreans living in Montreal conceive the role of family and other social supports in the provision of care to people living with dementia? 2) What are the commonalities and differences in providing care to family members with dementia among prospective Koreans caregivers? This study used phenomenological approaches and purposeful sampling for data collection. In depth semi-structured interviews were conducted with eight prospective Korean caregivers (both immigrants and Canadian-born people Korean of ethnic origin). All interviews were tape recorded transcribed and analyzed. Several methods were used to ensure the trustworthiness of the study, including transferability, dependability, credibility, and confirmability. Analysis of these interviews found three emerging themes which related to prospective Korean caregivers’ perceptions of dementia caregiving and social support. Three emerging themes were following: 1) the importance of family care; 2) the roles of the Korean church as a support system; 3) ability to find resources and help from outside of the family. Findings from this study suggest that service providers are crucial to the provision of services to primary caregivers as well as their family members. Service providers who have different cultural backgrounds should first attempt to understand their clients’ family values and then offer information to family members regarding how to engage in caregiving. In doing so, caregivers and their family members can not only reduce their levels of care burden but also provide better care to their loved ones with dementia.

Levels of Care Burden and Self-efficacy for Informal Caregiver of Patients With Cancer.

This descriptive study was conducted to determine the levels of self-efficacy and caregiver burden experienced by caregivers for patients with cancer. The study was conducted at the oncology clinic of a hospital in Erzurum city, Turkey. The study sample consisted of 101 caregivers of patients hospitalized with a diagnosis of cancer. The Self-Efficacy Scale Turkish version and the Zarit Caregiver Burden Scale, which is a sociodemographic questionnaire, were used for data collection. The level for the burden of care for caregivers to patients with cancer was moderate, and the level of self-efficacy was moderate. A statistically significant, positive relationship was found between the scores for the Care Burden Scale and the Completing Behavior Subscale (r = 0.213; P < .05). A statistically significant, negative relationship was observed between the mean scores of the Care Burden Scale with Self-Efficacy Scale's total score (r = -0.104; P < .05), Sustaining Behavior Subscale (r = -0.324; P < .01), and Initiating Behavior Subscale (r = -0.199; P ≤ .05). Therefore, initiatives focused on self-efficacy levels should be developed to increase the abilities of caregivers for patients with cancer.

Factors related to care burden among parents of adults with developmental disabilities.

Purpose To clarify the care burden and associated factors among parents of adults with developmental disabilities in order to obtain suggestions for the family supports.Methods Subjects included 125 parents of adults (aged 18 or older) with developmental disabilities. All parents belonged to and/or contacted parents' associations, mental health welfare centers, and support centers for persons with developmental disabilities in the Tokyo metropolitan area. Participants completed self-report questionnaire surveys from October to November 2011. Questionnaire items included parent and adult demographic factors, parent care burden, disability state, and support available from family and others. The level of care burden was measured using the short Japanese version of the Zarit Burden Interview (J-ZBI_8).Results A total of 64 responses were analyzed. The mean J-ZBI_8 score was 12.8 (SD=7.2). Adults' most common diagnoses were autism (50%), Asperger's syndrome (25%), and pervasive developmental disorder (20%). state of daily life (P=0.041) and presence of secondary disability (P=0.001) were associated with parents' care burden in age-adjusted multiple linear regression analysis.Discussion Overall, the results suggest that it is important to assess developmental disability status and family support when developing programs to reduce parental care burden.

Caracterización y percepción de carga de cuidadores familiares de personas con enfermedad crónica en Arauca

Se caracterizó un grupo de cuidadores familiares de personas con enfermedad crónica (ECNT) que asisten al Hospital San Vicente de Arauca y determinar su percepción del nivel de carga con el cuidado, a través de un estudio de tipo descriptivo, cuantitativo de corte transversal, realizado con un muestreo no probabilístico intencional de 42 cuidadores familiares de personas captados entre los meses de agosto a octubre del año 2012. Este estudio hace parte del Programa Disminución de la carga de la Enfermedad Crónica en Colombia.La descripción de las características socio demográficas y de salud de los cuidadores familiares de personas con ECNT y de los receptores de sus cuidados que asisten al Hospital San Vicente de Arauca, permiten aproximarse a sus condiciones de cuidado. Con respecto a la percepción del nivel de carga con el cuidado, el 83% de los cuidadores familiares considera que no tiene sobrecarga, el 7% una sobrecarga leve y el 10% una sobrecarga intensa.Palabras clave: Cuidadores; Costos de la enfermedad; Enfermedad Crónica (Decs).

Functional disability in primary progressive aphasia

Background: In primary progressive aphasia (PPA), assessment of language predominates over assessment of functional impairment in activities of daily living (ADLs) in clinical and research environments. Most of the knowledge on functional disability in PPA relies largely on anecdotal experience and limited numbers of studies published to date.Aims: (1) To describe the different patterns of ADL functional disability in the main PPA variants: semantic variant, nonfluent aphasia, and the more recently defined logopenic variant; (2) to draw relations between functional disability, cognitive, and behavioural symptoms in the PPAs; (3) to examine the impact of functional disability on carer burden, and (4) to provide specific strategies to address the described problems.Main Contribution: Profiles of disease progression are described from a functional perspective, as well as the relationship (or lack thereof) between functional disability and cognitive and behavioural symptoms. Dementia-management strategies for carers and professionals in overcoming day-to-day difficulties are provided, and the impact of functional deficits on those around the patient, including their spouses and children, are discussed.Conclusions: Patterns of ADL functional disability and their progression vary between PPA subtypes. Understanding these different profiles of impairment is critical to the development of tailored interventions. There is a range of therapeutic strategies which can be trialled to promote improved ADL functioning, which in turn may also help in reducing levels of carer burden in PPA.

Patterns of care at end of life for people with primary intracranial tumors: lessons learned

To determine the variability in processes of care in the last 6 months of life experienced by patients dying of primary intracranial tumors and potential predictors of place of death, a death-backwards cohort was assembled using historical data and 1,623 decedents were identified. 90 % of people had ≥ 1 admission to an acute care hospital and 23 % spent ≥ 3 months of their last 6 months of life in acute care. 44 % had ≥ 1 ER visits and 30 % were admitted ≥ 1 times to ICU. Only 18 % had a home visit by a physician. 10 % died at home but 49 % died in hospital, while 40 % died in a palliative care facility. Age, comorbidities, and being diagnosed with grade 4 astrocytoma were associated with greater burden of care. Level of care burden and age were associated with higher odds of dying in a treatment intensive place of death, being diagnosed with grade 4 astrocytoma had opposite effect. Despite valuable research efforts to improve the treatment of primary intracranial tumors that focus on biology, refinements to surgery, radiation, and chemotherapy, there is also room to improve aspects of care at the end of life situation. An integrative approach for this patients' population, from diagnosis to death, could potentially reduce the care burden in the final period on the health care system, patient's family and improve access to a better place of death.

Enhancement of carer skills and patient function in the non-pharmacological management of frontotemporal dementia (FTD): A call for randomised controlled studies.

FTD is a unique condition which manifests with a range of behavioural symptoms, marked dysfunction in activities of daily living (ADL) and increased levels of carer burden as compared to carers of other dementias. No efficacious pharmacological interventions to treat FTD currently exist, and research on pharmacological symptom management is variable. The few studies on non-pharmacological interventions in FTD focus on either the carer or the patients' symptoms, and lack methodological rigour. This paper reviews and discusses current studies utilising non-pharmacological approaches, exposing the clear need for more rigorous methodologies to be applied in this field. Finally, a successful randomised controlled trial helped reduce behaviours of concern in dementia, and through implementing participation in tailored activities, the FTD-specific Tailored Activities Program (TAP) is presented. Crucially, this protocol has scope to target both the person with FTD and their carer. This paper highlights that studies in this area would help to elucidate the potential for using activities to reduce characteristic behaviours in FTD, improving quality of life and the caregiving experience in FTD.

Cultural differences are reflected in variables associated with carer burden in FTD: a comparison study between India and Australia.

There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background.OBJECTIVEThe present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country.METHODSData of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained.RESULTSOverall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia.CONCLUSIONThis study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

Self‐ and Proxy Reports Across Three Populations: Older Adults, Persons With Alzheimer’s Disease, and Persons With Intellectual Disabilities

Abstract Self‐reports are often used to determine general well‐being in both research studies and practice settings. Proxy reports are also used to gain insight into the well‐being of persons with physical ill‐heath, cognitive impairments, or disabilities. The author reviews the utility and limitations of using self‐ and proxy reports across three populations: older adults, persons with Alzheimer’s disease (AD), and persons with intellectual disabilities (ID). For differing reasons, the use of self‐ and proxy reports often results in inaccuracies. Among older adults, the level of subjectivity in questions, type of relationship, and levels of carer burden may influence the outcomes, while increasing severity of dementia and decreased deficit awareness may affect data from persons with AD, and question formats, acquiescence, and level of intellectual development may affect data from persons with ID. However, generally, proxy reports can be useful in determining aspects of well‐being in people with ID, in people with AD, and in the general older population, as long as researchers keep in mind that factors that can enhance (e.g., experiences/abilities that are more objectively assessed, and attention to question format) or diminish (e.g., experiences/abilities that are more subjectively assessed, severity of dementia, and level of ID) the quality of information obtained. With respect to the use of these techniques with people with ID, the author concludes that careful attention to survey items, especially response format and wording, can greatly enhance self‐report completion and proxy concordance.

How was it for you? Families' experiences of receiving Behavioural Family Therapy.

The benefits of family interventions for families having to cope with serious mental health problems are well documented but routine implementation of these interventions is often problematic. Despite a wealth of research on the clinical outcomes of such interventions, very little is known about families' subjective perceptions of receiving them. This study reports the findings of a phenomenological enquiry into the lived experience of 10 families who received Behavioural Family Therapy (BFT) as part of a training initiative in the West Midlands Health Region of the UK. The results show that families were very satisfied with the intervention. They reported reductions in the levels of stress within the family, reduction in levels of carer burden, enhanced communication skills and a positive sense of empowerment. They attributed these changes to receiving BFT. The majority of families viewed mental health professionals and services more favourably compared to their experiences before receiving BFT. This is an important finding for service providers, commissioners and mental heath workers.

Burden in carers of dementia patients: higher levels in carers of younger sufferers

A comparative study of the clinical characteristics of early onset dementia (onset before the age of 65) and late onset dementia sufferers was conducted. The level of carer burden among carers of both groups was measured. Carer burden was significantly higher among carers of younger sufferers, although there were no significant differences between the groups in terms of clinical features such as severity of dementia or behavioural disturbance. Higher carer burden showed an inverse relationship to patient's age. Our results have implications in terms of encouraging community care for dementia sufferers, and suggest that further exploration to identify factors associated with burden in younger carers is required.