Family Care Burden Research Articles

Terminal Delirium: Recommendations from Bereaved Families' Experiences

Although delirium is a common complication in terminally ill cancer patients and can cause considerable distress for family members, little is known about effective care strategies for terminal delirium. The primary aims of this study were 1) to clarify the distress levels of bereaved families and their perceived necessity of care; and 2) to explore the association between these levels and family-reported professional care practice, family-reported patient behavior, and their interpretation of the causes of delirium. A multicenter questionnaire survey was conducted on 560 bereaved family members of cancer patients who developed delirium during their final two weeks in eight certified palliative care units across Japan. We obtained 402 effective responses (response rate, 72%) and, as 160 families denied delirium episodes, 242 responses were analyzed. The bereaved family members reported that they were very distressed (32%) and distressed (22%) about the experience of terminal delirium. On the other hand, 5.8% reported that considerable or much improvement was necessary, and 31% reported some improvement was necessary in the professional care they had received. More than half of the respondents had ambivalent wishes, guilt and self-blame, and worries about staying with the patient. One-fourth to one-third reported that they felt a burden concerning proxy judgments, burden to others, acceptance, and helplessness. High-level emotional distress and family-perceived necessity of improvement were associated with a younger family age; male gender; their experience of agitation and incoherent speech; their interpretation of the causes of delirium as pain/physical discomfort, medication effects, or mental weakness/death anxiety; and their perception that medical staff were not present with the family, not respecting the patient's subjective world, not explaining the expected course with daily changes, and not relieving family care burden. In terminal delirium, a considerable number of families experienced high levels of emotional distress and felt some need for improvement of the specialized palliative care service. Control of agitation symptoms with careful consideration of ambivalent family wishes, providing information about the pathology of delirium, being present with the family, respecting the patient's subjective world, explaining the expected course with daily changes, and relieving family care burden can be useful care strategies.

Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community

There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the 'Subjective and Objective Family Burden Interview' (SOFBI) in the assessment of principal caregivers in Spain. The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter-rater and test-retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test-retest were between 0.5 and 0.8, whereas inter-rater agreement was nearly perfect. Maximum-likelihood factor analysis showed four well-defined factors, which fitted the previously designed domains. Feasibility was also good. The SOFBI is a multi-domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.

Rural/Urban Differences in Barriers to and Burden of Care for Children With Special Health Care Needs

To examine the barriers and difficulties experienced by rural families of children with special health care needs (CSHCN) in caring for their children. The National Survey of Children with Special Health Care Needs was used to examine rural-urban differences in types of providers used, reasons CSHCN had unmet health care needs, insurance and financial difficulties encountered, and the family burden of providing the child's medical care. We present both unadjusted and adjusted results to allow consideration of the causes of rural-urban differences. Rural CSHCN are less likely to be seen by a pediatrician than urban children. They are more likely to have unmet health care needs due to transportation difficulties or because care was not available in the area; there were minimal other differences in barriers to care. Families of rural CSHCN are more likely to report financial difficulties associated with their children's medical needs and more likely to provide care at home for their children. Examining results from both unadjusted and adjusted odds ratios shows that the burden of care for families of rural CSHCN stems both from socioeconomic differences and health system differences. Policies aimed at achieving equity for rural children will require focusing on both individual factors and the health care infrastructure, including increasing insurance coverage to lessen financial difficulties and addressing the availability of providers in rural areas.

Burden of Care in Families of Patients with Schizophrenia

Family caregivers of persons with schizophrenia and other disorders experience high levels of burden. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a medium income country in South America. Forty-one relatives of patients with schizophrenia who were attending a public mental health outpatient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale. All caregivers show a very high degree of burden, especially mothers, older, with low educational level, without an employment and who are taking care of younger patients. As developing country, Chile has a few national social welfare and community rehabilitation programs for relatives of psychiatric patients, especially in this part of the country. This significantly influences the high level of burden experienced by these caregivers. These results suggest a close monitoring of carer's mental health and the provision of a family intervention and psycho-social support.

Burden of care and general health in families of patients with schizophrenia

De-institutionalization of psychiatric patients has led to a greater emphasis on family management in the community, and family members are often overwhelmed by the demands that caring for a patient with schizophrenia involves. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a regional area of a medium income country in South America. Sixty-five relatives of patients with schizophrenia who were attending a public mental health out-patient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale and SF-36 Health Survey (SF-36). Average levels of burden were very high, particularly for mothers, carers with less education, carers of younger patients and carers of patients with more hospitalisations in the previous 3 years. Kinship and number of recent hospitalisations retained unique predictive variance in a multiple regression. Burden was the strongest predictor of SF-36 subscales, and the prediction from burden remained significant after entry of other potential predictors. In common with families in developed countries, family members of schizophrenia patients in regional Chile reported high levels of burden and related functional and health impact. The study highlighted the support needs of carers in contexts with high rates of poverty and limited health and community resources.

Indwelling catheter use in home care: elderly, aged 65+, in 11 different countries in Europe

To describe possible differences/patterns in the use of indwelling urinary catheters (IUC) in Europe. A prospective, population-based, assessment study. The target population was 4,455 (random sample of 405 from each of 11 countries) aged 65+ receiving home care. The clients were assessed by using the Resident Assessment Instrument MDS-HC; epidemiological and medical characteristics of clients and service utilisation were recorded. The frequency of use of IUC related to the patients' activities of daily living (ADL) and cognitive functioning. The sample consisted of 4,010 informants: 74% female, with mean age 82.3 +/-7.3 years; men 80.9 +/-7.5 years and female 82.8 +/-7.3 years. A total of 216 (5.4%) clients were using IUC. In Italy 23% were using a catheter compared with 0% in The Netherlands. Catheter use was more common in men than in women (11.5% versus 3.3%). Use of IUC was significantly correlated to certain diseases and symptoms and increase in care burden and formal services. Twenty-six per cent of the informants with indwelling catheters scored three or more on a hierarchical ADL scale (0-6). The clients using IUC in the Nordic countries were less dependent on care than in the other European countries. Models built on multivariate analysis explained 37% of the use of IUC. Tradition and attitudes may explain the differences between the sites. Catheter use is associated with formal or family care burden. The need for nursing home placement ought to be considered in some cases. A stricter criterion for using IUC may be considered in the southern European countries.

Network for improving the dementia care system

Network for improving the dementia care system

Determination of the Burden of Care in Families of Cardiac Surgery Patients

"Burden of care" is a term that describes the effects of the multifaceted stressors associated with providing care to an ill family member. Descriptions of burden of care in acute care populations, such as families of patients who have had coronary artery bypass grafting, are very limited. The three purposes of this study were to describe the burden of care in families of coronary artery bypass grafting surgery patients, to compare the burden of care in families grouped by length of stay, and to provide evidence for the validity of the Caregiving Burden Scale in acute care populations. A survey was done using a longitudinal design over the first six weeks following coronary artery bypass grafting surgery. The 124 spouses of coronary artery bypass grafting surgery patients who participated reported a moderate degree of burden in caring for post cardiac surgery family members. Providing emotional support, taking over household tasks, and monitoring patients' conditions created the greatest burden for the participants. Length of stay in hospital did not have an impact on burden of care. The analysis of the data supports the validity of the Care-giving Burden Scale when used in the cardiac surgery population. (Prog Cardiovasc).

Strategies to support families of children with end-stage renal failure

The burden of care for families looking after children with end-stage renal failure can be considerable, especially when it involves home peritoneal dialysis and supplementary feeding. Good communication with the family and between team members delivering the multidisciplinary care is essential. Stress may be partly reduced by meeting the information needs and supplementing the spoken word with booklets, videos, tape-recorded interviews and play preparation for children. Families greatly appreciate a continuum of care between the hospital and community which is enhanced by team members visiting the home, nursery/school and primary care physician to impart and update knowledge. Respite care is essential for home dialysis patients. It can be enhanced by an evening baby-sitting service and the involvement of a home care renal nurse, as well as a holiday support strategy. Participation of the families in a regular parents support group provides not only an opportunity to integrate families into the unit, but also allows direct feedback on issues affecting the quality of care.

Current parental stress in maltreating and nonmaltreating families of children with multiple disabilities

Questionnaires were mailed to families of children with multiple disabilities to investigate whether differences in parental perception of stress and burden of care could be identified in those families who had previously been reported and substantiated as abusive or neglectful as compared to those families who had not been so reported. Two hundred and fifty-seven parents completed Friedrich's revised version of Holroyd's Questionnaire on Resources and Stress (QRS-F), an instrument designed to measure stress and burden of care in families of children with disabilities. Twenty-five (9.7%) had previously substantiated maltreatment reports. Results suggest that a history of maltreatment is not related to the family's currently perceived stress levels as measured by the Friedrich scale. Implications of the results are discussed.

The Burden of Care for Families of Elderly Persons with Dementia

ABSTRACTA survey of 119 elderly persons with dementia was conducted in the Kingston, Ontario area. Among the findings regarding the burden of care for families of such persons are:1. The proportion of key relatives who said providing the needed care to the subjects had been very difficult was significantly higher for those who have become residents of institutions than those still at home.2. Objective measures of severity of the subjects' dementia were at particularly high levels for individuals for whom providing care had been difficult, while measures which reflect the physical burden of providing care were not.3. Among the subjects for whom providing care had been very difficult, extreme behavioural manifestations (e.g., physical violence) were reported for 67 per cent, versus only 1 per cent of remaining subjects.4. The value system of family providers of care also plays an important role in whether the afflicted person is admitted to an institution.

Special Devices as Aids in the Management of Child Self-Mutilation in the Lesch-Nyhan Syndrome

The Lesch-Nyhan syndrome is a rare inborn error of purine metabolism associated with hyperuricacidemia, mental retardation, and an insatiable urge for self-mutilation, especially of the extremities. Insensitivity to pain and severe muscle spasms create very difficult management problems, especially for children being cared for at home. Fortunately this syndrome is rare (1 per 380,000 live births). Four known patients are under treatment in Manitoba, of which two brothers are the subject of this study. In general, the medical management of these patients has been unsuccessful, especially in controlling self-mutilation. It therefore was decided to manage these children by the use of mechanical aids. Through the utilization of custom-designed seating devices control of the self-mutilation has been obtained, reducing the burden of family care. It is now possible for the children to attend regular school on a half-day basis. They are also able to engage in community activities without the fear that a mishap will occur when not under the vigilance of the immediate family.