The realities of postoperative disability and the carer's burden.
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Outcome after high-risk, complex neurosurgery for progressive skull base pathology, and its effect on carers, has been examined. Two different outcome measures were used. The Glasgow Outcome Score (GOS) assesses overall social capability and dependence of the patient, while the 36 item short-form health survey (SF-36), a generic quality of life measure, can be compared directly with the general population. Overall outcome using the GOS indicated a favourable outcome for 13 of the 17 patients studied. The SF-36 demonstrated that more than half the patients were functioning at a level below the accepted norm. The reasons for this discrepancy and the validity of outcome scales have been analysed. In addition, the effect upon carers, its relevance to assessment of outcome, and the need to involve potential carers in the process of informed consent was stated. Our conclusions are applicable throughout the surgical specialities, and especially to high-risk complex surgery. (+info)
Estimating the cost of informal caregiving for elderly patients with cancer.
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PURPOSE: As the United States population ages, the increasing prevalence of cancer is likely to result in higher direct medical and nonmedical costs. Although estimates of the associated direct medical costs exist, very little information is available regarding the prevalence, time, and cost associated with informal caregiving for elderly cancer patients. MATERIALS AND METHODS: To estimate these costs, we used data from the first wave (1993) of the Asset and Health Dynamics (AHEAD) Study, a nationally representative longitudinal survey of people aged 70 or older. Using a multivariable, two-part regression model to control for differences in health and functional status, social support, and sociodemographics, we estimated the probability of receiving informal care, the average weekly number of caregiving hours, and the average annual caregiving cost per case (assuming an average hourly wage of $8.17) for subjects who reported no history of cancer (NC), having a diagnosis of cancer but not receiving treatment for their cancer in the last year (CNT), and having a diagnosis of cancer and receiving treatment in the last year (CT). RESULTS: Of the 7,443 subjects surveyed, 6,422 (86%) reported NC, 718 (10%) reported CNT, and 303 (4%) reported CT. Whereas the adjusted probability of informal caregiving for those respondents reporting NC and CNT was 26%, it was 34% for those reporting CT (P <.05). Those subjects reporting CT received an average of 10.0 hours of informal caregiving per week, as compared with 6.9 and 6.8 hours for those who reported NC and CNT, respectively (P <.05). Accordingly, cancer treatment was associated with an incremental increase of 3.1 hours per week, which translates into an additional average yearly cost of $1,200 per patient and just over $1 billion nationally. CONCLUSION: Informal caregiving costs are substantial and should be considered when estimating the cost of cancer treatment in the elderly. (+info)
Carers' and Users' Expectations of Services--User version (CUES-U): a new instrument to measure the experience of users of mental health services.
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BACKGROUND: No existing instrument measures all or even most of the issues considered important by users of mental health services. AIMS: To develop and test a self-assessment instrument to enable users of mental health services to rate their experience across the range of domains that they consider to be important. METHOD: Relevant domains were identified and a new instrument was drafted and field tested to examine its psychometric properties. RESULTS: The 17-item, self-rated Carers' and Users' Expectations of Services--User version (CUES-U) appears acceptable to most service users. Its items have reasonable test-retest reliability and a 'total CUES-U score' correlates significantly with a total score of the Health of the Nations Outcome Scales (Spearman's rho=0.42; P < 0.01). CONCLUSIONS: The development and testing of CUES-U suggest that it might be feasible to apply a self-rated measure of the expectations and experience of users of mental health services. (+info)
Spouses of first-ever stroke patients: psychological well-being in the first phase after stroke.
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BACKGROUND AND PURPOSE: A stroke affects not only the patient but also the spouse. To better support the spouse during the acute phase of stroke, knowledge is needed about his or her experience with the situation. The aim of the present study was to study the well-being of the spouses of stroke patients during the acute state of stroke and to identify factors that may influence their well-being. METHODS: Eighty-three consecutively enrolled spouses of first-ever stroke patients <75 years old participated. Their psychological well-being, measured by the Psychological General Well-Being Index 10 days after the stroke, was compared with norm values. Multiple analyses of correlation were performed to investigate the effects on psychological well-being of (1) age and sex, (2) level of impairment of the stroke patient, and (3) intrapersonal variables such as previous life satisfaction and view of the future. RESULTS: The study group showed significantly lower psychological well-being compared with norm values except for the dimension of general health. The variables that correlated significantly with the Psychological General Well-Being total score were the sensorimotor impairment of the stroke patient and the "view of the future." This view of the future also correlated significantly with the level of functional ability of the stroke patients. CONCLUSIONS: During the acute phase of stroke, the severity of the stroke has an impact on the spouse's image of his or her future life, whereas the individual appraisal of personal consequences and of his or her own coping capacity seems to have a greater impact on the psychological well-being of the spouses than does the objective state of disability. (+info)
Improving adherence to malaria treatment for children: the use of pre-packed chloroquine tablets vs. chloroquine syrup.
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Malaria is a major cause of morbidity and mortality among children under five in sub-Saharan Africa. Prompt diagnosis and adequate treatment of acute clinical episodes are essential to reduce morbidity and prevent complications and mortality. In many countries, chloroquine syrup is the mainstay of malaria treatment for children under five. Not only is syrup more expensive than tablets, adherence to the prescribed dose at home is a problem because mothers use wrongly sized measuring devices or have difficulty with the instructions. We investigated the impact of introducing pre-packed tablets for children on adherence to treatment and compared the total cost of the tablets with that of syrup. Children aged 0--5 years diagnosed with malaria at the clinic over a 6-week period received either pre-packed tablets or syrup by random assignment. The principal caregivers were interviewed at home on day 4 after attending the clinic. Of the 155 caregivers given pre-packed tablets, 91% (n=141) adhered to the recommended dosage, while only 42% (n=61) of 144 who were provided syrup did. Only 20% of caregivers who received syrup used an accurate 5 ml measure. The cost of treatment with tablets was about one-quarter that of syrup and 62% (n=96) of caregivers preferred tablets. Pre-packed chloroquine tablets are a viable alternative to syrup. (+info)
Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors.
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OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment. (+info)
Predictors of psychological adjustment in school-age children infected with HIV.
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OBJECTIVE: To assess for significant differences in psychological functioning between HIV-infected children and a demographically matched healthy control group and to examine the utility of applying a stress and coping model to children with HIV disease. METHODS: Participants included HIV-infected children (ages 6-16) and their caregivers (n = 36) and a control group of healthy children and their caregivers (n = 32). During routine clinic visits, children completed measures of psychological adjustment, health locus of control, and coping style, and caregivers completed measures of their own and their child's psychological adjustment. RESULTS: Caregiver-reported and child self-reported psychological adjustment scores did not significantly differ between the HIV and control groups, with the exception of significantly more internalizing behavior problems reported in the control group. Hierarchical multiple regression analyses revealed that the stress and coping model accounted for 36% of the variance in HIV-infected children's self-reported psychological adjustment. In addition, child age and coping style were significant predictors of child self-reported psychological adjustment, but not of caregiver-reported child adjustment. CONCLUSIONS: Approximately 25% of children with HIV disease exhibited clinically significant emotional or behavioral problems; however, even higher rates of psychological adjustment problems were found in healthy children. Children with HIV disease who have not been told their diagnosis and children who endorse more emotion-focused coping strategies tend to exhibit more psychological adjustment problems. (+info)
Brief report: fathering a child living with HIV/AIDS: psychosocial adjustment and parenting stress.
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OBJECTIVE: To examine the psychosocial stressors experienced by fathers of children diagnosed with HIV/AIDS. METHODS: Thirty-one fathers whose children (ages 6 to 19) were participating in pediatric HIV clinical trials completed self-report measures of parenting stress, psychological distress, and need for psychosocial services. RESULTS: Over half of this sample experienced significantly elevated levels of both parenting stress and psychological distress compared to standardized norms. Ninety-seven percent of these men reported the need for services including gender-specific support groups, assistance with discipline, disease management, and assistance with planning for the future. CONCLUSIONS: Elevated levels of parenting stress and psychological distress in fathers of children living with HIV suggest the need for additional psychological intervention in this population. (+info)