Challenges and support needs of parents of children with developmental disabilities (DD) in Accra, Ghana.

BACKGROUND: Parents of children with developmental disabilities (DD) have diverse challenges and needs. If met, these parents are able to provide adequate care for their children. Unfulfilled needs like information about their child's diagnosis, counselling, and poor access to informal and formal supports increase parental stress and hinder their potential to provide optimal care for their children and themselves. AIMS: This study explores the unique challenges and needs of parents caring for children with DD in the Accra metropolis. This is the first study exploring the needs of parents in a Lower-middle income (LMIC) country like Ghana. METHODS AND PROCEDURES: A qualitative research design was adopted for this study. Data was collected using semi-structured interviews from 9 parents of children with DD. RESULTS: Findings from thematic analysis revealed five themes including; Emotional needs; Informational needs; Financial needs; Informal Support, and Formalized Support. Parents indicated their great need for information on their children's condition, support from family, religious groups, and other formalized institutions and how to provide better care. CONCLUSIONS AND IMPLICATIONS: Parents have several expectations and needs which must be addressed. Findings have the potential of influencing the design and development of appropriate interventions to meet the needs and improve the quality of life of parents of children with DD in the Ghanaian context.

Determinants of willingness to accept kidney transplantation among chronic kidney disease patients in Ghana.

BACKGROUND: The burden of chronic kidney disease in Africa is three to four times higher compared to high-income countries and the cost of treatment is beyond the reach of most affected persons. The best treatment for end stage renal disease is kidney transplantation which is not available in most African countries. As kidney transplantation surgery is emerging in Ghana, this study assessed factors which could influence the willingness of patients with chronic kidney disease to accept it as a mode of treatment. METHODS: This cross-sectional survey was carried out among patients with chronic kidney disease in Korle-Bu Teaching Hospital. A consecutive sampling method was used to recruit consenting patients. A structured questionnaire and standardized research instruments were used to obtain information on demographic, socio-economic characteristics, knowledge about transplantation, perception of transplantation, religiosity and spirituality. Logistic regression model was used to assess the determinants of willingness to accept a kidney transplant. RESULTS: 342 CKD patients participated in the study of which 56.7% (n = 194) were male. The mean age of the participants was 50.24 ± 17.08 years. The proportion of participants who were willing to accept a kidney transplant was 67.3% (95%CI: 62.0-72.2%). The factors which influenced participants' willingness to accept this treatment included; willingness to attend a class on kidney transplantation (p < 0.016), willingness to donate a kidney if they had the chance (p < 0.005), perception that a living person could donate a kidney (p < 0.001) and perceived improvement in quality of life after transplantation (p < 0.005). The barriers for accepting kidney transplantation were anticipated complications of transplant surgery and financial constraints. CONCLUSION: More than two-thirds of CKD patients were willing to accept a kidney transplant and this is influenced by multiple factors. Government health agencies must consider full or partial coverage of kidney transplantation through the existing national health insurance scheme. Further, efficient educational programmes are required to improve both patients' and physicians' knowledge on the importance of kidney transplantation in the management of end stage renal disease in Ghana.

Willingness to pay for kidney transplantation among chronic kidney disease patients in Ghana.

BACKGROUND: Kidney transplantation is the preferred treatment for patients with end stage renal disease. However, it is largely unavailable in many sub-Sahara African countries including Ghana. In Ghana, treatment for end stage renal disease including transplantation, is usually financed out-of-pocket. As efforts continue to be made to expand the kidney transplantation programme in Ghana, it remains unclear whether patients with Chronic Kidney Disease (CKD) would be willing to pay for a kidney transplant. AIM: The aim of the study was to assess CKD patients' willingness to pay for kidney transplantation as a treatment option for end stage renal disease in Ghana. METHODS: A facility based cross-sectional study conducted at the Renal Outpatient clinic and Dialysis Unit of Korle-Bu Teaching Hospital among 342 CKD patients 18 years and above including those receiving haemodialysis. A consecutive sampling approach was used to recruit patients. Structured questionnaires were administered to obtain information on demographic, socio-economic, knowledge about transplant, perception of transplantation and willingness to pay for transplant. In addition, the INSPIRIT questionnaire was used to assess patients' level of religiosity and spirituality. Contingent valuation method (CVM) method was used to assess willingness to pay (WTP) for kidney transplantation. Logistic regression model was used to determine the significant predictors of WTP. RESULTS: The average age of respondents was 50.2 ± 17.1 years with most (56.7% (194/342) being male. Overall, 90 out of the 342 study participants (26.3%, 95%CI: 21.7-31.3%) were willing to pay for a kidney transplant at the current going price (≥ $ 17,550) or more. The median amount participants were willing to pay below the current price was $986 (IQR: $197 -$1972). Among those willing to accept (67.3%, 230/342), 29.1% (67/230) were willing to pay for kidney transplant at the prevailing price. Wealth quintile, social support in terms of number of family friends one could talk to about personal issues and number of family members one can call on for help were the only factors identified to be significantly predictive of willingness to pay (p-value < 0.05). CONCLUSION: The overall willingness to pay for kidney transplant is low among chronic kidney disease patients attending Korle-Bu Teaching Hospital. Patients with higher socio-economic status and those with more family members one can call on for help were more likely to pay for kidney transplantation. The study's findings give policy makers an understanding of CKD patients circumstances regarding affordability of the medical management of CKD including kidney transplantation. This can help develop pricing models to attain an ideal poise between a cost effective but sustainable kidney transplant programme and improve patient access to this ultimate treatment option.

Knowledge and Willingness to Donate Kidneys for Transplantation in Ghana: A Cross-Sectional Survey.

BACKGROUND: The main treatment modalities for chronic kidney disease (CKD) are dialysis and kidney transplantation. While kidney transplantation provides better survival and quality of life outcomes, it is a new treatment option in Ghana. Finding kidney donors for transplant may be a major challenge due to varied views of the public. METHODS: This cross-sectional study was carried out in 5 purposively selected communities in the Greater Accra region in Ghana. Structured questionnaires and standardized instruments were used to assess sociodemographic characteristics, spirituality, and perception of kidney transplantation. RESULTS: The mean age of the 480 participants was 29.60 ± 10.65 years. The proportion of men was 51%. The average score for knowledge of participants on kidney donation was 4.8 ± 2.6. The level of spirituality score was 25.4 ± 3.89. Approximately 48% (231/480) of participants were willing to donate a kidney while still alive. Willingness to donate when dead was 72% (344/480). Willingness to donate a kidney when dead was significantly lower among the participants in the older age groups. High level of knowledge about kidney transplantation, being employed, basic formal education, and never married were associated with willingness to donate kidney (P < .05). CONCLUSION: Our results suggest that participants have a low level of knowledge regarding kidney transplantation, while about two-thirds are willing to donate only after death. Continuous public education is key to raise public awareness of the need for kidney transplants. This will support the Ministry of Health in their efforts to institute a kidney transplant program in Ghana.

Use of computer assisted and interactive cognitive training programmes with moderate to severely demented individuals: a preliminary study.

The purpose of this study was to investigate the potential effects of interactive cognitive training and computer-assisted programmes in reducing decline in older adults with dementia. The primary goal of this programme was to maintain participants' level of cognitive function. This study included six moderately to severely demented older adults living in a secured memory-impairment unit within an assisted living community. The participants were assessed with neuropsychological tests prior to, and immediately following, an intensive six-week cognitive training programme. The results showed that the participants improved significantly on measures of overall cognitive function, including short-term memory and cognitive failures. Caregiver reports also indicated significant improvement in the participants' behaviour signs and socialization. Additionally, these participants did not demonstrate significant decline on any of the measures from pre-test to post-test levels. This preliminary study indicates that a combined interactive cognitive training and individual-based computer training programme may effectively reduce decline and even improve some cognitive and behavioural functioning in demented older adults. A follow-up of the participants after four weeks of no training revealed some decline in some of the cognitive and behavioural measures, thus supporting the effectiveness of the training programmes.

Global aphasia: an innovative assessment approach.

OBJECTIVE: To provide an alternative language comprehension assessment strategy for patients unable to be tested with traditional verbally/behaviorally based methods. DESIGN: Event-related brain potentials were recorded from three midline scalp locations to visually and aurally computer-presented sentences, 50% of which were semantically appropriate and 50% semantically incongruous. SETTING: A rehabilitation hospital. PATIENT: A 21-year-old man with a traumatic brain injury. RESULTS: The patient exhibited brain response patterns to aurally presented congruous and incongruous sentences indicative of intact semantic processing capabilities. These findings resulted in reinstatement of individualized rehabilitative intervention, with a successful outcome. CONCLUSIONS: This innovative technique provides new opportunities for assessing intellectual function in noncommunicative patients who were patients previously unable to be tested.

Outcomes of a nonaversive behavior intervention in intellectually impaired individuals using goal attainment scaling.

BACKGROUND: Intellectually impaired individuals with severe behavior problems pose a challenge to caregivers in treatment and management. The use of behavioral intervention techniques, for example, differential reinforcement of other behavior (DRO), has been shown the most effective with this client group type. Studies suggest that DRO is effective and may result in generalization of treatment effects. OBJECTIVES: To test which of three behavior interventions (DRO, mutual goal setting [MGS], and routine care) improve self-care behaviors in moderately intellectually impaired individuals with behavioral problems, and to examine whether the use of goal attainment scaling (GAS) in evaluating interventions reflects improvement in self-care behavior. METHOD: A quasi-experimental design with small-group and single-subject repeated measures were used. The participants (15 congenitally moderately intellectually impaired residents with inadequate self-care behaviors) were randomly assigned to one of the three interventions for fostering self-care behaviors. To evaluate the outcome of treatment, GAS was used. Staff in the DRO and MGS groups developed and evaluated rehabilitation plans with each participant. Participants in the DRO group, but not the MGS group, were positively reinforced immediately. Staff in the routine care group assisted residents. The intervention continued for 22 weeks; follow-up was 16 weeks. RESULTS: A change score was calculated from the GAS for each participant and group. The expected range of mean GAS scores for individuals and groups was between 23 and 77, with 23 (-2) representing less than and 77 (+2) much more than expected improvement. CONCLUSIONS: Findings showed DRO to be more effective than the other interventions in improving self-care behaviors. Comparisons of the GAS mean baseline and mean intervention scores in all three interventions demonstrated the actual improvement in the self-care behaviors.

Individual differences in auditory middle latency responses in elderly adults and patients with Alzheimer's disease.

Previous research has suggested that the Pb component of the middle-latency auditory evoked response (MLAER) is differentially abnormal in patients with Alzheimer's disease relative to control subjects. In the present study, this putative abnormality was examined in vertex-recorded MLAERs elicited by monaural stimulation in 14 patients with Alzheimer's disease (six females) and 22 age-matched control subjects (10 females). A sex difference in Pb elicitation was revealed in control subjects; Pb area was twice as large in females than males (P < 0.05). Pb and Pa amplitudes and latencies did not differ between male and female control subjects. Comparisons of Pb between patients and controls were conducted within each sex. There was no main effect of group on Pb area, amplitude, or latency, Pa amplitude was significantly larger in patients than control subjects; there was no group difference in Pa latency. This study did not replicate previous reports of differences in Pb between patients with Alzheimer's disease and elderly control subjects. We demonstrated that Pb elicitation may be unreliable in elderly control subjects and found evidence of a possible sex difference. The effects of inter-subject variables (e.g. age, sex) must be understood more fully before MLAERs can be exploited as meaningful markers of brain dysfunction.

Cognitive deficits in peripheral vascular disease. A comparison of mild stroke patients and normal control subjects.

BACKGROUND AND PURPOSE: Evidence indicates that peripheral vascular disease (PVD) and cerebrovascular disease (CVD) coexist and therefore reflect a generalized pattern of atherosclerotic disease in an individual. Given the known deleterious effects of CVD on cognitive function, it was hypothesized that patients with PVD may have impaired cerebral function due to concomitant but clinically unrecognized CVD. The purpose of this study was to determine whether neuropsychological tests would reveal this potential dysfunction. METHODS: Neuropsychological test scores (n = 25) were compared across three groups: (1) 29 PVD patients (13 amputees, 16 nonamputees), (2) 29 age- and education-matched patients with atherothrombotic brain infarcts (ie, CVD), and (3) 30 age- and education-matched control subjects. RESULTS: PVD patients performed significantly worse (P < .002) than control subjects on eight neuropsychological measures of executive function, attention, and visuopatial function. The pattern and, in certain instances, the magnitude of impairment was highly similar between PVD and CVD subjects. Regression analysis revealed that PVD severity and ischemic heart disease were significant negative predictors of test performance. Depression and atherosclerotic risk factors did not explain neuropsychological deficits after the effects of PVD and ischemic heart disease were considered. CONCLUSIONS: PVD patients exhibit neuropsychological deficits that suggest the presence of mild vascular-related brain dysfunction. Patients with multiple manifestations of generalized atherosclerosis (ie, severe PVD, ischemic heart disease) appear to be particularly at risk. Clinicians should be alert to these potential deficits and to the possibility of further vascular-related cognitive decline.

Effects of light therapy on neuropsychological function and mood in seasonal affective disorder.

To date, little attention has been paid to changes in neuropsychological function in seasonal affective disorders (SAD). In this study, we investigated the performance of 30 patients with SAD on a wide range of cognitive variables before and after 2 weeks of light treatment with either white or placebo red light, as well as later in the summertime. Performance of subjects with SAD on neuropsychological tests was compared with a group of 29 age- and education-matched healthy control subjects. The most consistent deficits associated with SAD were on tests of cognitive failures, visual memory, and visual-construction skills. In contrast to specific bright light effects on psychiatric measures, reports of cognitive failures did not change with either light treatment. Visual memory and constructional deficits responded nonspecifically to treatment with either white or the presumed placebo red light. Surprisingly, visual memory deficits were seen again in the summer, at a time when mood, cognitive failures, and other cognitive functions appeared at normal levels. These data suggest that cognitive functioning is affected by SAD. In addition, light treatment may have differential effects on mood and cognition.

The effect of Danquah Communication System (DanCS) boards on maladaptive behaviours among individuals with severe intellectual impairment and non-verbal communication skills.

There is evidence that some individuals with severe intellectual impairment who are non-verbal may, out of frustration, display such inappropriate behaviour as aggression and self-injury as a means of communicating their needs to caregivers. The purpose of this study was to develop an inexpensive augmented communication device and to teach individuals with multiple impairment to use this method to communicate their needs in order to reduce their aggressive behaviours. The Dan Communication System (DanCS) symbol boards were therefore designed with computerized voice interface to help the individuals communicate to caregivers by means of audio and visual signs. A working DanCS board has been successfully developed and can now be mass produced by a manufacturer. The DanCS board is illustrated and described. A measurement device called the Goal Attainment Scale (GAS) that focused on three target behaviours; pressing of symbols, control of aggression, and social interaction with caregivers, was used to evaluate progress in the participating subjects (N = 30). Results showed that the multiply impaired individuals in the study significantly improved in all the targeted behaviours through the use of the DanCS. Details of the study are reported.

Evidence for multiple routes of speech production in a case of fluent aphasia.

A case study is reported of a 24-year old woman who developed fluent aphasia with superior reading relative to auditory comprehension following herpes simplex encephalitis. Her language disturbance showed exceptional features: oral reading, repetition and naming to confrontation were severely impaired and yet her spontaneous speech recovered to be relatively intact. These features are not consistent with Wernicke's aphasia, pure word deafness or any classic aphasic syndromes. These findings indicate the presence of several routes for phonological output that may be differentially impaired.

Validation of the Quick Cognitive Screening Test.

Reports in the literature suggest that 70% to 80% of cognitive deficits with probable organic basis are undetected in patients at risk, especially if symptoms are minimal. Studies have shown that clinically convenient beside screening tests show low sensitivity with a high rate of false-negative results. The purpose of this study was to validate a sensitive mid-range cognitive screening test to detect cognitive deficits, including those not usually identified by bedside mental status examinations. The Quick Cognitive Screening Test (QCST) was initially developed and subsequently adapted from original unpublished work by the late John McFie. The test was designed to detect global cognitive dysfunction and specific areas of cognitive dysfunction. Areas assessed included orientation, attention and concentration, memory, language, construction, perception, spatial ability, and abstract reasoning. Scoring is multidimensional, each subtest having a score, plus summary and global scores. Thirty-eight neurological patients with a cerebrovascular accident, traumatic brain injury, and other miscellaneous diagnoses, were recruited from a tertiary care center for physical rehabilitation. Fifteen residents from a psychiatric rehabilitation center were also recruited. Thirty-two healthy volunteers from the community served as age-matched controls. The Wechsler Adult Intelligence Scale-Revised (WAIS-R) was used to establish reliability and validity of the QCST. The National Adult Reading Test (NART) was used to estimate premorbid intellectual functioning. Results showed that the QCST identified cognitive impairment in all of the neurological and psychiatric patients assessed. Oneway analyses of variance of five summary scores showed significant differences between the groups.(ABSTRACT TRUNCATED AT 250 WORDS)

Use of goal attainment scaling in brain injury in a rehabilitation hospital.

We report a study of the measurement properties of goal attainment (GA) scaling when used in the rehabilitation of brain injury patients. GA scaling is an individualized measurement technique with mathematical properties allowing for calculation of summary scores with a normal distribution. The present study examined 16 inpatients, 13 of whom had suffered a traumatic brain injury. In addition to GA scaling, standardized measures were employed to address issues such as content validity and construct validity. GA scaling change scores correlated highly (r = 0.81) with clinical judgment of efficacy and modestly with standard performance measures. A high level of inter-rater reliability was found between admission (r = 0.92) and discharge (r = 0.94) scores. GA scaling seems to be a feasible method of evaluating rehabilitation in brain injury patients, with promising measurement properties. The goals set are extremely meaningful to the patient and rehabilitation team, providing valuable feedback throughout the rehabilitation course.

Neuropsychological function in peripheral vascular disease amputee patients.

Approximately 75% of major lower-extremity amputations are the result of peripheral vascular disease (PVD). Factors that predispose a patient to PVD (smoking, hyperlipidemia, diabetes mellitus) are also risk factors for the development of cerebrovascular disease, which could adversely affect rehabilitation. The purpose of this study was to test the hypothesis that cognitive deficits are present in amputee patients with PVD. Fourteen patients with lower-extremity amputations secondary to PVD (4 women, 10 men; mean age = 67.4 years) were recruited from a tertiary-care center for physical rehabilitation. Fourteen community-dwelling healthy volunteers (9 women, 5 men; mean age = 69.9 years) served as age-matched and education-matched controls. To assess a broad range of cognitive function, we administered standard neuropsychological tests of memory and learning, language, praxis, visuospatial skills, and abstract reasoning. PVD patients performed significantly more poorly on certain measures of psychomotor speed (Wechsler Adult Intelligence Scale-Revised Digit Symbol subtest) and problem solving/abstract reasoning (Modified Card Sorting Test) relative to controls (using the Bonferroni correction for multiple comparisons, p < .002). There were trends toward poorer patient performance on certain measures of oral fluency, concentration, reasoning, and visuoperceptual organization and constructional skills (p < .01). We propose that these cognitive deficits may be the result of unrecognized concomitant cerebrovascular disease in PVD patients and are part of a generalized pattern of vascular disease. Future research should control affective factors such as stress or depression surrounding amputation and attempt to identify the etiologic or demographic factors that are associated with neuropsychological deficits in patients with PVD.