Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.
Participants: 44 bereaved carers, who had been identified by GP as ‘main carer’ of someone recently deceased (3–12 months), aged between 38 and 87 years old (mean= 67).
Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.
Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.
Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care ‘work’. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience. 相似文献
Method: Preferences from 100 carers, recruited through carers’ organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.
Results: The most preferred attributes were ‘respite care, available regularly to fit your needs’ (coefficient 1.29, p = < 0.001) and ‘home care provided regularly for as long as needed’ (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall.
Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers’ preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support. 相似文献
Objective: To further explore the processes by which carers derive a sense of meaning from caring.
Methods: Representative case sampling was used to recruit a purposive sample of 20 carers for individuals living with dementia. In-depth semi-structured interviews were audio-recorded and transcribed, and analysed using pluralist qualitative methodology.
Results: A framework of three sources from which carers derived meaning from caring was identified, encompassing: carers’ perceptions of how ‘right’ or ‘symmetrical’ caring felt in light of their current and previous relationship with the person with dementia; maintenance of a ‘protected’ sense of self within the care relationship; and carers’ perceptions of their ‘social connectedness’ outside the relationships.
Conclusion: Holistic assessment based on this framework could help to tailor individualised provision of support, foster resilience and safeguard carers’ well-being. 相似文献
Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia.
Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for.
Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study. 相似文献
Design: A randomised, controlled, assessor-blinded trial.
Setting: Rehabilitation institute.
Participants: Thirty-six chronic poststroke (15.89?±?9.01 months) hemiparetic subjects (age: 46.44?±?7.89 years, 30 men and functional ambulation classification of median level 3).
Interventions: Activity-based MT comprised movements such as ball-rolling, rocker-board, and pedalling. The activities were provided on the less-affected side in front of the mirror while hiding the affected limb. The movement of the less-affected lower limb was projected as over the affected limb. Conventional motor therapy based on neurophysiological approaches was also provided to the experimental group. The control group received only conventional management.
Main outcome measures: Brunnstrom recovery stages (BRS), Fugl-Meyer assessment lower extremity (FMA-LE), Rivermead visual gait assessment (RVGA), and 10-metre walk test (10-MWT).
Results: Postintervention, the experimental group exhibited significant and favourable changes for FMA-LE (mean difference?=?3.29, 95% CI?=?1.23–5.35, p?=?.003) and RVGA (mean difference?=?5.41, 95% CI?=?1.12–9.71, p?=?.015) in comparison to the control group. No considerable changes were observed on 10-MWT.
Conclusions: Activity-based MT facilitates motor recovery of the lower limb as well as reduces gait deviations among chronic poststroke hemiparetic subjects. 相似文献
Aims: To review, summarise, and discuss literature relating to four themes which have emerged from the work of Professor Worrall: (1) Research capacity building; (2) Implementation of research evidence in clinical practice; (3) Meaningful outcome measurement; and (4) Improvement of psychological and emotional outcomes.
Main contribution: A review of the literature, with examples of practical applications.
Conclusions: The work of Professor Worrall has greatly influenced the field of aphasia; her legacy is the research capacity she has built in Australia and around the world. 相似文献
Methods: Three alternative strategies for assigning more than one case to each stagger position are examined.
Results: The three recommended strategies achieve the objective while maintaining the study’s internal and statistical-conclusion validities.
Conclusions: ExPRT, a freely available Excel-based randomization-test package, can be used to assist in both the design and statistical analysis associated with each of the strategies. 相似文献
Method: Cross-sectional survey using a self-report questionnaire, distributed to staff employed in a 20% sample of all registered dementia-specialist CHs in England, either by postal or direct distribution.
Results: Questionnaires were returned from 352 care staff (25%), representing 5% of all dementia-specialist CHs, half were CH without nursing. Respondents estimated caring for 14,585 residents, 9,361 with dementia and 5,258 with BtC. 30.2% of residents with dementia were estimated as being prescribed a medicine to control BtC. BtC reported as experienced by most respondents were: shouting (96.6%), verbal aggression (96.3%) and physical aggression (95.7%), with physical aggression viewed as most difficult to manage. Top behaviours experienced every shift were: wandering (77.8%), perseveration (68.2%) and restlessness (68.2%).
Approaches such as assessing residents, knowing them and treating them as individuals, identifying triggers, having time for them and using an appropriate style of communication, were viewed as key to managing BtC, rather than guideline-specific interventions such as massage, aromatherapy and animal-assisted therapy.
Only 38% agreed/strongly agreed medicines were useful to control BtC, which was related to the extent to which they were prescribed. Training was available, but variable in quality with on-line training being least useful and on-the job training most desirable.
Conclusion: BtC are commonly and frequently experienced by care staff, who consider individual approaches, having time and good communication are key to successful management. 相似文献
Aim: The aim of this study is to obtain insight into the care provided in relation to the reported unmet care needs and satisfaction with the total care provided is examined.
Method: A cross-sectional study of 99 people with LLD in an ambulatory setting.
Results: In 67% of patients, at least one unmet need was ascertained. In most cases (80%) care was actually provided for those needs by professionals and/or informal caregivers. Patients were satisfied with the care delivered for 81% of the reported care needs. Satisfaction was lowest for social care needs (67%). For six specific care needs it was demonstrated that dissatisfied patients were significantly more depressed than satisfied patients.
Conclusion: Even though patients might receive care for certain needs, this does not mean that their needs are met. A substantial proportion of patients with LDD feel that they need additional help for unmet needs. 相似文献
Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment.
Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist.
Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities.
Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene) 相似文献
Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses.
Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation.
Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population. 相似文献
Material and Methods: review of the literature was done.
Results: PD patients show remarkable heterogeneity in their response to L-dopa and this profound interindividual heterogeneity suggests that there is a genetic predisposition.
Conclusions: The impact of the genetic makeup of every individual on PD treatment appears to be of great importance in order to achieve not only the optimum therapeutic effect, but also with minimal side effects. 相似文献
Method: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language, year of publication, sex or age of participants. Two independent researchers conducted the quality appraisal of studies. We synthesise data through meta-ethnography and developed a behavioural model to explain dyadic interaction.
Results: Seventeen studies were included in the review. The meta-ethnography generated two third-order constructs: Personal orientation and noises. When people with dementia and their carers have dyadic-oriented goals, their behavioural responses may promote positive interaction. When only one partner has dyadic goals, context-related stress may affect the interaction, because of no perceived shared understanding of the situation.
Conclusion: Our findings suggest that unequal power distribution within dyads, can cause significant stress, when coping strategies are impaired. We discussed implications for family carers, people with dementia, and health professionals deriving from greater understanding of dyadic dynamics to care. 相似文献
Material and methods: We used electron microscopic analysis of the morphological changes in aging rats’ optic nerves as an easily accessible part of the CNS.
Results: Several age changes were observed in aging rats (36?months) vs. young adult rats (6?months), namely degeneration of axons, decreased packing density and morphological alterations of myelination, including the ballooning of some myelin sheaths, separation of myelin lamellae and degenerative changes in the oligodendrocytes population.
Conclusion: Cognitive decline related to aging may occur in part due to the disturbed myelination of axons in CNS white matter. 相似文献
Objectives: To determine the usefulness and psychometric validity of the upper-limb subscale of the STREAM in an acute stroke population.
Methods: Rasch Analysis, including unidimensionality assumption testing, determining model fit, and analysis of: reliability, residual correlations, and differential item functioning.
Results: 125 individuals were assessed using the upper-limb subscale of the Stroke Rehabilitation Assessment of Movement (STREAM) tool. Rasch analysis suggests the STREAM is a unidimensional measure. However, when scored using the originally proposed method (0–2), or using the response pattern (0–5) neither variant fit the Rasch model (p < 0.05). Although, the reliability was good (Person-Separation Index – 0.847 and 0.903, respectively). Correcting for the disordered thresholds, and thereby producing the new scoring pattern, led to substantial improvement in the overall fit (chi-square probability of fit – 22%), however, the reliability was slightly reduced (PSI – 0.806).
Conclusions: The study proposes a new scoring method for the upper-limb subscale of the STREAM outcome measure in the acute stroke population. 相似文献
Materials and methods: A 20-year old female patient with probable (Naranjo adverse reaction probability score of 7) DIAM during treatment with isotretinoin therapy for nodular acne solely, presenting with headache. Pseudotumor cerebri was appropriately ruled-out.
Results: Summary of data altogether lead us suggest that isotretinoin triggered DIAM, possible due to a delayed hypersensitivity mechanism type III or IV.
Conclusion: We highlight a quite uncommon cause of DIAM that may be increasing in frequency due to the current increasing use of isotretinoin against nodular acne. 相似文献
Method: Eleven males with TBI and BoC were recruited and 25 semi-structured qualitative interviews were conducted (9 individuals with TBI, 9 close others, 7 clinicians). A six-phase thematic analysis approach was utilised.
Results: Frequent and persistent BoC were reported and the key themes identified included the brain injury, control, environment, mood, identity, social relationships, and meaningful participation. Whilst the brain injury contributed to BoC in all cases, the way the other themes manifested and interacted was variable.
Conclusions: This study enriches our understanding of factors associated with BoC. Themes emerging from this study will inform interventions designed to reduce BoC and ultimately maximise quality of life for individuals with TBI and their families. 相似文献
Objective: Evaluate the muscle compartment in patients presenting spinocerebellar ataxia (SCA) type 3 and 10.
Methods: Forty-six patients presenting SCA type 3 and 10 were assessed and 76 volunteers were selected to the control group. In order to evaluate the muscle compartment, muscle mass anthropometric measurements were assessed and total skeletal muscle mass calculated through a predictive equation.
Results: Women with SCA3 presented greater weight loss and muscle mass reduction compared to those with SCA10 and the control group. Among the predictive measurements, calf muscle circumference showed a more significant correlation with total skeletal muscle mass (p = 0.718).
Conclusion: Patients presenting both types of ataxia did not show severe depletion in their nutritional status; however, those with SCA3 displayed greater weight loss and muscle mass reduction compared to the SCA10 group. 相似文献
Objectives: The aim of the present review is to present the latest data on the new insights and developments in the treatment of sporadic inclusion body myositis, focusing on Bimagrumab and Alemtuzumab.
Methods: For the purpose of the review we searched multiple internet databases in order to find the most recent studies and clinical trials on the safety, tolerability and efficacy of Bimagrumab and Alemtuzumab in sporadic inclusion body myositis.
Results: We found four trials on Bimagrumab, with one of them being an extension phase III study, and one small series trial on Alemtuzumab. The first clincopathological trial on Bimagrumab showed promising evidence, which were partially confirmed by the double-blinded controlled multicentre trial, however the primary endpoint of improving 6-m walking distance or improving the muscle strength has not been reached. The evidence from the Alemtuzumab trial was also promising, but the risk of bias of the study was relatively high, because it was open labelled, the number of patient was low and the yearly disease progression was much higher than in other recent studies.
Conclusions: Although both Bimagrumab and Alemtuzumab were well tolerated and showed promising results, the Bimagrumab trial did not reach the primary endpoint, and the Alemtuzumab trial has a relatively high risk of bias and the results need to be interpreted with caution. 相似文献
Objectives: This study aimed to determine how well specific Canadian Best Practice Recommendations for PSD screening were adopted within a stroke rehabilitation outpatient clinic before and after the utilization of a standardized clinical form.
Methods: Practices were evaluated through retrospective chart review before and after the implementation of the standardized form which cued physicians to administer the Patient Health Questionnaire 9 (PHQ-9) at the first outpatient visit. Participants included those aged ≥18 years with a primary diagnosis of stroke.
Results: One hundred thirty-five subjects’ charts were reviewed. Form implementation was associated with increased rates of PSD screening (93.8% versus 0%) and charting regarding mood (55.4% versus 15.7%).
Conclusion: This study highlights the frequency of depressive symptoms in an outpatient cohort and demonstrates how screening rates can be improved by using a standardized form. Routine PHQ-9 completion at the first outpatient visit was associated with more physician–patient discussion and documentation regarding mood. 相似文献