Measuring the impact on relatives of caring for people with Alzheimer's disease: Quality of life,burden and well-being

Abstract

This study compared key correlates of caregiver stress in 50 Alzheimer's disease patients and their primary caregivers. in relation to three outcome measures - perceived burden, psychological well-being, and quality of life (QoL). These were evaluated using the Zarit Burden Interview. General Health Questionnaire (GHQ-30), and Schedule for the Evaluation of Individual QoL (SEIQoL-DW) respectively. Informal social support was evaluated on Vaux's Social Support Appraisal Scale. Patients' cognitive. functional, and behavioural status were rated on Mini-Mental State Examination, Blessed-Roth Dementia Scale. and Baumgarten Dementia Behaviour Disturbance Scale respectively. Standardised multiple regression analysis was used to compare the outcome measures. In this model burden was highly related to behaviour disturbance. and also to social support (adjusted R² = 0.45). Well-being was significantly related to behaviour disturbance, and also to functional status (adjusted R² = 0.40). With regard to QoL the model performed poorly as most of the variance in QoL was not accounted for by the model (adjusted R² = 0.14). These findings highlight differences in factors determining caregiver QoL. burden and well-being.     

Day-to-day living with severe chronic obstructive pulmonary disease: Towards a family-based approach to the illness impacts

Objective: This study explores the perspectives of both patients and family members regarding the impact of chronic obstructive pulmonary disease (COPD) in their family life.

Design: An exploratory qualitative study was conducted with patients and their family members in the chronic phase of COPD. Individual interviews were performed to explore participants’ perspectives and submitted to thematic analysis.

Results: Six major themes emerged from patients’ perspective: (1) impact of COPD symptoms on personal and family daily life; (2) (over)protective family support; (3) difficulties in couple communication; (4) sense of identity loss; (5) fear of COPD progression; and (6) coping resources. Five main themes emerged from the family members’ perspective: (1) restrictions in family’s social life; (2) emotional distress related to COPD exacerbations; (3) tension in couple relationship; (4) financial strain of COPD; and (5) coping resources.

Conclusions: The overall findings illustrate the complex interaction between the experience of living with COPD and communication patterns, emotional states, social support and social roles within the family. The results highlight the need to develop family-based interventions to facilitate a functional adjustment to COPD. However, these interventions in COPD remain undeveloped and empirical evidence is needed.     

Effects of a post-hospitalization group health education programme for patients with coronary heart disease

Abstract

Effects of a post-hospitolization group health education programme for patients with coronary heart disease. A health education programme was offered to groups of coronary heart patients and their partners after discharge from hospital. A randomized pre-test post-test control group design was used to evaluate the effects of this experimental intervention. The health education programme was offered to 109 coronary heart patients in groups of between five and eight patients together with their partners in addition to standard medical care and physical training. A control group of 108 patients received only standard medical care and physical training.

The intervention consisted of eight weekly two-hour group health education sessions and one follow-up session. All sessions focused on the promotion of healthy habits and the reduction of adverse psychosocial consequences of the incident.

In the short term (about four months after the incident) the health education programme showed statistically significant intervention effects on knowledge about coronary heart diseases, smoking cessation, healthy eating habits and the number of consultations with the family physician, but no effects on emotional distress. In the long term (one year after the incident) there was only a significant intervention effect on smoking cessation.

These results suggest that the effects of the programme are modest, especially in terms of maintenance of behavioural change. As a consequence, it is suggested that the programme should not be offered to all coronary patients during cardiac rehabilitation, but only to those who can be expected to profit most from it.     

The PDQ-8: Development and validation of a short-form parkinson's disease questionnaire

Abstract

The Parkinson's Disease Questionnaire (PDQ-39) is a disease specific measure of health status which covers eight dimensions of ill-health, and contains 39 questions. The development of the questionnaire has been outlined in full elsewhere and is briefly outlined in this paper. Psychometric techniques are used here to derive a single index figure from the PDQ-39, transformed to a score range from 0 (good health) to 100 (poor health). A sub-set of items is then selected from the PDQ-39 to create a shorter form version, the PDQ-8. Each item selected is the one most highly correlated with the overall domain score to which it contributes: in cases where more than one item correlated equally strongly with the total then the item which received the highest completion rate was selected. The items were summed together and transformed onto a score from 0 to 100. The results gained from the single index gained from the PDQ-39 are compared with that gained from the PDQ-8, and are found to be remarkably similar. The use of the PDQ-8 is recommended over the PDQ-39 where a shorter form measure is required and where a single index measure of overall health status is acceptable or desirable.     

Vital exhaustion measures and their associations with coronary heart disease risk factors in a sample of spanish-speakers

Abstract

The main purpose of this research was to study the reliability and conceptual validity of two Spanish language measures of Vital Exhaustion (VE), a short-term risk factor for coronary artery disease (CAD). The English version of the Maastricht Questionnaire for Vital Exhaustion was used to make a Spanish language questionnaire (VEQ) and a Spanish language interview (VEI) whose scoring systems were equal to the original version. These instruments were administered to a sample of healthy working men (n = 100) and women (n = 130) in Caracas, Venezuela. Participants also completed questionnaires designed to measure anger-expression and social support and were assessed by means of the Structured Interview to measure Type A Behaviour Pattern (TABP). Information about other CAD-risk factors, such as age, smoking behavior, and health habits, were collected.

High reliability coefficients, .85 and .91, were found for the VEI and VEQ, respectively. Principal component analysis provided one-factor solutions for each instrument. The pattern of correlations between VE, assessed by the VEI, and other personality characteristics was rather similar to the pattern observed in other cultures. In general significant, but modest, correlations were observed between VE and TABP, anger expression, a negative self-concept, and low social support. We conclude that VE appears to be a meaningful construct in this particular cultural context.     

A longitudinal application of three health behaviour models in the context of skin protection behaviour in individuals with occupational skin disease

Occupational skin disease (OSD) is common, associated with poor prognosis and poses a significant burden to the individual and society. We applied the theory of planned behaviour (TPB), the prototype-willingness model (PWM) and the health action process approach (HAPA) to the prediction and explanation of occupationally relevant skin protection behaviour in individuals with OSD. We used a longitudinal design. In this study, 150 individuals participating in a 3-week inpatient tertiary prevention programme completed measures assessing the constructs of the TPB, PWM and HAPA at admission (T?0), discharge (T?1) and once the individual had returned to work and worked for 4 consecutive weeks (T?2) (n?=?117). Intention was measured at T?0 and skin protection behaviour at T?2. Path analysis was used to assess the longitudinal associations of the models’ constructs with intention and skin protection behaviour. TPB as well as PWM variables accounted for 30% of variance in behaviour, HAPA variables for 33%. While not all predictions were confirmed by the data, all three models are able to inform us about the formation of skin protection intention and behaviour in individuals with OSD. The findings are discussed in light of future interventions and research.     

Executive function performance on the children's kitchen task assessment with children with sickle cell disease and matched controls

Objective: The aim of this study was to compare executive function abilities of 8- to 12-year-old children with sickle cell disease (SCD) with a matched control sample. The measures included the parent and teacher Behavior Rating Inventory of Executive Function (BRIEF); the Delis-Kaplan Executive Function System (D-KEFS), Free Sorting Test and Color Word Interference Test; and the Children's Kitchen Task Assessment (CKTA), a new performance measure. Methods: Twenty-two children with SCD were recruited from one hematology clinic and 22 community children, matched on characteristics of age, gender, and race, were selected from a larger sample of controls for comparison. Parents and teachers completed rating scales. Results:As hypothesized, children with SCD scored significantly lower than matched controls on Digit Span Forward; on 5 of the 9 D-KFES Color Word Interference and Sorting tasks; on CKTA organization, initiation, and task completion; and on the BRIEF's parent and teacher Metacognitive Index (MI) and Global Executive Composite (GEC) scores. Conclusion:Cognitive and performance evaluations indicate lower executive function among children with SCD. Results substantiate the need for evaluative triangulation for children with SCD: Neurocognitive testing supported by performance testing, and adult reflection of a child's daily performance compared to other children. These elements will provide rich data to create educational support for children with SCD who have frequent hospitalizations, school absences, and the potential presence of cerebral vascular accident symptomology.     

Neurocognitive Sequelae of Pediatric Sickle Cell Disease: A Review of the Literature

This literature review summarizes all studies relating neuropsychological performance to neuroimaging findings in pediatric sickle cell disease (N=28; published 1991–2005). Although inconsistencies exist within and across domains, deficits in intelligence (IQ), attention and executive functions, memory, language, visuomotor abilities, and academic achievement have been identified. Overall neurocognitive compromise was revealed to be related to the level of neurological injury and the location of silent infarct. Attentional and executive dysfunction is prevalent and related to frontal lobe abnormalities.     

The Attention Demands of Movements

The probe technique has been employed extensively to measure the attention demands of movement control. Inherent in any RT paradigm is the potential confounding effect of anticipation. Experiment 1 studied this problem by varying probe frequency (or, conversely, catch-trial frequency) for three independent groups of subjects performing the same movement. Probe frequencies of one-third and two-thirds produced V-shaped curves of probe RT plotted against probe position within the movement, while a three-thirds condition was described by a negatively sloped linear function. Because of the different shaped curves it was recommended that a two-thirds frequency be adopted by all researchers in this area. Experiments 2 and 3 looked at the effects of movement length and movement time on the attention demands of movement. Shorter (11-cm) movements were more attention demanding in the middle of the movement than the longer (50-cm) movements, but movement time had no effect.     

Sensorimotor Impairment of Speech and Hand Movement Timing Processing in Parkinson’s Disease

Models of motor control have highlighted the role of temporal predictive mechanisms in sensorimotor processing of speech and limb movement timing. We investigated how these mechanisms are affected in Parkinson’s disease (PD) while patients performed speech and hand motor reaction time tasks in response to sensory stimuli with predictable and unpredictable temporal dynamics. Results showed slower motor reaction times in PD vs. control in response to temporally predictable, but not unpredictable stimuli. This effect was driven by faster motor responses to predictable stimuli in control subjects; however, no such effect was observed in the PD group. These findings indicated the relationship between PD pathology and sensorimotor deficits in temporal predictive mechanisms of timing processing during speech production and hand movement.