Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.

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.     

Do patients with severe poststroke communication difficulties have a higher incidence of falls during inpatient rehabilitation? A retrospective cohort study

Background: Falls in hospital are common and serious complications of stroke. Associations have been found between communication disorders and increased rates of falls, but have received relatively little consideration as a risk factor for falls among stroke survivors.

Objectives: To investigate whether there is an association between severe communication impairment and falls among patients receiving inpatient rehabilitation after stroke.

Methods: A retrospective audit of 149 records of consecutive patients admitted to an inpatient rehabilitation facility after stroke over a two-year period was conducted. The relationship between falls and severe communication impairment was explored using (1) direct comparison of falls in patients with and without functional communication for the inpatient ward environment and (2) multivariate logistic regression to examine factors that may predict falls, including presence or absence of functional communication. In each analysis, falls were examined both as a binary outcome (fall or no fall), and the rate of falls per day.

Results: The 32 patients in the sample (21.7%) who were unable to communicate their basic needs were almost twice as likely to fall in hospital as those with functional communication (RR 1.94, 95% CI 1.15 to 3.24). Several commonly assessed factors were not significant predictors of falls (including falls history, polypharmacy, and cognitive impairment) in this population. Lack of functional communication was the strongest independent predictor of falls rate.

Conclusions: Findings suggest that severe communication disorders may be under recognized as a falls risk factor after stroke.     

A qualitative study of the processes by which carers of people with dementia derive meaning from caring

Background: Most individuals with dementia live in the community, receiving care from family or lay carers. Carers’ wellbeing, and the quality of the care they provide, partly depends on their ability to derive meaning from caring for someone with dementia. Both carers’ previous relationship with their relative and the caregiving process itself contribute to this sense of meaning. However, it remains unclear why some carers derive meaning from these sources, whereas others do not.

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.     

Effects of aging on the myelination of the optic nerve in rats

Aim of the study: Cognitive decline due to aging is most probably the result of changes in the white matter in the central nervous system (CNS) and/or demyelination.

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.     

Screening Adherence for Depression Post Stroke: Evaluation of Outpatients,a London Experience (SAD PEOPLE)

Background: Post stroke depression (PSD) is common, and the transition home following discharge may be especially challenging for stroke survivors.

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.     

French translation and validation of a fragile X syndrome screening checklist

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst.

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)     

Repetitive verbalization in Alzheimer’s disease

Background: Repetitive verbalization in Alzheimer’s disease (AD) refers to the tendency of AD patients to repeat the same story/question to the same listener.

Aim: Our study assessed whether this verbal perseveration might be related to episodic memory decline, values of teaching, inhibitory decline, and/or decline in cognitive theory of mind.

Methods & Procedures: Thirty mild AD patients and 33 control older adults were asked to perform four verbal fluency tasks, and repeated words were retained as an index of repetitive verbalization. Participants were also administered the Grober and Buschke episodic memory task, scales of values of teaching, the Hayling inhibition task, and the false-belief task for the cognitive theory of mind.

Outcomes & Results: Results showed more repetitive verbalization in AD patients than in control older adults. Repetitive verbalization was significantly correlated with inhibition and episodic memory in AD patients. As for control older adults, repetitive verbalization was significantly correlated with values of teaching and inhibition. Regression analyses showed that repetitive verbalization was significantly predicted by inhibition in AD patients and values of teaching in control older adults.

Conclusions: Repetitive verbalization may reflect the difficulty in inhibiting irrelevant stimuli in AD patients, but it may serve as a tool to ensure transmission of personal knowledge in normal aging. Our findings suggest distinct functions of repetitive verbalization in normal aging and AD.     

Cross-language generalisation in bilingual aphasia: what are we missing when we do not analyse discourse?

Background: Cross-language generalisation has been reported in about half of all published cases of bilingual aphasia treatment. However, many of those studies report data from only single-word naming tasks. In unbalanced bilinguals with aphasia, treating the post-morbidly less proficient language may result in apparent improvement to only the treated language.

Aims: To investigate whether when tools are used to measure language abilities beyond the single-word and sentence levels, such as analysing discourse production, improvement in the post-morbidly more proficient language may be observed.

Methods & Procedures: A Hebrew-English bilingual person with mild-moderate non-fluent agrammatic aphasia was recruited. He received 36 h of Verb Network Strengthening Treatment (VNeST) in English only, with pre- and post- treatment assessment of his language abilities in both English and Hebrew.

Outcome & Results: Significant improvement was observed in the treated language (English) for noun and verb retrieval in object and action picture naming and within sentence production, but not for the untreated language (Hebrew). In discourse, greater and more widespread improvement was observed in the untreated language (Hebrew) than in the treated language (English).

Conclusions: We advocate for more wide-ranging measurement tools in the field to reduce the risk of missing valuable information regarding generalisation. Only with a more representative understanding of the effects of language treatment in bilinguals with aphasia can we better understand the mechanisms behind cross-language generalisation.     

Structural muscular adaptations in upper limb after stroke: a systematic review

Background: Stroke is a leading cause of disability in the adult population, impairing upper limb (UL) movements affecting activities of daily living. Muscle weakness has been associated to disabilities in this population, but much attention is given to central nervous system alterations and less to skeletal muscles.

Objective: The objective of this review is to carry out a systematic literature review to identify structural muscle alterations in the UL of poststroke individuals.

Method: The search was performed in December, 2017. MEDLINE, PubMed, SCOPUS, CINAHL, and Science Direct were used as electronic databases. There was no restriction regarding language and publication dates. Studies conducted on poststroke subjects and results on UL skeletal muscle alterations identified by imaging tests were included.

Results: Seven studies were included. The sample size and the variables varied among the studies. All the studies compared the paretic UL with the nonparetic UL and one of the studies also compared healthy subjects. Ultrasonography was the most used measurement tool to assess muscle adaptation.

Conclusions: This review demonstrated little evidence with poor to fair quality on the structural muscle adaptations in the poststroke subjects, showing muscle atrophy, a higher stiffness, and amount of fibrous and fat tissue without alterations in lean tissue of distal muscles of the paretic UL compared to the nonparetic limb. However, the nonparetic side also presented alterations, which makes it an inappropriate comparison. Thus, well-designed studies addressing this issue are required.     

Rasch analysis of the upper-limb subscale of the stroke rehabilitation assessment of movement (STREAM) tool in an acute stroke cohort Rasch analysis of the upper-limb subscale of the STREAM tool in an acute stroke population

Background: Stroke is a leading cause of disability worldwide. The most common impairment resulting from stroke is upper-limb weakness.

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.     

Effects of phonomotor treatment on discourse production

Background: Aphasia is an acquired language disorder that makes it difficult for people to produce and comprehend language, with all people with aphasia (PWA) demonstrating difficulty accessing and selecting words (anomia). While aphasia treatments typically focus on a single aspect of language, such as word retrieval, the ultimate goal of aphasia therapy is to improve communication, which is best seen at the level of discourse.

Aims: This retrospective study investigated the effects of one effective anomia therapy, Phonomotor Treatment (PMT), on discourse production.

Methods & Procedures: Twenty-six PWA participated in 60 h of PMT, which focuses on building a person’s ability to recognize, produce, and manipulate phonemes in progressively longer nonword and real-word contexts. Language samples were collected prior to, immediately after, and 3 months after the treatment program. Percent Correct Information Units (CIUs) and CIUs per minute were calculated.

Outcomes & Results: Overall, PWA showed significantly improved CIUs per minute, relative to baseline, immediately after treatment and 3 months later, as well as significantly improved percent CIUs, relative to baseline, 3 months following treatment.

Conclusions: PMT, which focuses on phonological processing, can lead to widespread improvement throughout the language system, including to the functionally critical level of discourse production.     

The effects of computer-based cognitive rehabilitation in patients with visuospatial neglect following stroke: a systematic review

Objectives: To identify studies concerning the effects of computer based cognitive rehabilitation (CBCR) on visuospatial neglect (VN) after stroke to summarize the current state of knowledge in this research field and make recommendations for future research.

Methods: Four electronic databases were systematically searched. Authors of relevant studies were contacted to detect unpublished data or articles not found by searching databases. Data was extracted from included studies using predefined coding schemes and characteristics and results of individual studies were summarized qualitatively.

Selection criteria: Studies were included if at least 50% of the included patients had a stroke, if the studies explored the effects of CBCR as a primary intervention for rehabilitation of VN and if they included neuropsychological outcome measures for the presence of VN.

Results: Seven studies were included. Six of the seven studies suggested positive effects of CBCR on VN after stroke. However, the study that did not find these effects was also the study with the strongest methodological quality. All included studies consisted of small samples, varied greatly in design and had various methodological limitations.

Conclusion: Because the existing literature is very sparse and studies have various methodological limitations, it is currently not possible to either support or reject the effects of CBCR on VN after stroke. Future studies should aim to compare CBCR with active and passive control conditions and include larger samples in randomized and blinded designs.     

Measurement properties of the upright motor control test in adults with subacute stroke

Background: Previous studies have distilled the Upright Motor Control Test Knee Extension and Knee Flexion subscales (UMCT-KE and UMCT-KF, respectively) from the original 6-item instrument and examined these as stand-alone rapid tests of voluntary movement control in the standing position. Systematic review evidence suggests that the UMCT-KE and UMCT-KF may have value in predicting walking ability after stroke.

Objective: To examine the interrater and intrarater reliability, and concurrent validity of the UMCT-KE and UMCT-KF, and associations with walking ability in adults with subacute stroke.

Methods: A prospective repeated assessments design was implemented in a rehabilitation department in a public teaching hospital. A consecutive sample of patients with subacute first-time stroke (N = 50; mean age = 51 ± 12 years; 20 females; mean time post-stroke = 68 ± 48 days) completed the study. Three physical therapists independently administered the UMCT-KE and UMCT-KF on two testing occasions 2 days apart (t1 and t2). On t2, a fourth rater administered the Leg subscale of the Motricity Index (MI-Leg) as criterion standard.

Results: The UMCT-KE and UMCT-KF demonstrated substantial to almost perfect interrater and intrarater reliability (W = 0.77–0.95), with lower limits of 95% confidence intervals extending to no lower than the substantial level. Both the UMCT-KE and UMCT-KF showed high correlations with the MI-Leg (ρ = 0.747–0.775) and significant associations with walking ability. p Values for all tests were <0.001.

Conclusions: The UMCT-KE and UMCT-KF are reliable and valid tests for rapidly estimating voluntary movement control of the lower limbs in adults with subacute stroke.     

Can Motivational Interviewing follow-up calls improve the implementation and retention of a specific communication support (Key Word Sign) by staff supporting people with an intellectual disability? A pilot project

Background: This study examined whether Motivational Interviewing (MI) follow-up calls improved the extent to which a specific therapeutic technique (Key Word Sign) presented in training was retained and implemented by staff supporting people with an intellectual disability.

Method: Thirty-eight residential support workers who attended Key Word Sign (KWS) training were divided into three groups. One group received post training MI follow-up calls, the second received non-MI “check-in control” (CIC) follow-up calls and the third received no follow-up calls.

Results: Both follow-up conditions outperformed the no follow-up condition on KWS knowledge retention and use. No significant differences were noted between the MI and CIC condition in this study.

Conclusion: The results highlight the value of post-training follow-up in promoting knowledge retention and implementation of skills. Methodological challenges (including treatment fidelity issues across groups) prevented firm conclusions about the impact of MI from being drawn.     

Functional and cognitive variables predicting successful use of chopsticks or a spoon by the paretic upper extremity in patients following stroke: a cross-sectional study

Background: The factors necessary for successful use of chopsticks or a spoon, by patients with a paretic upper extremity (UE) following stroke are unknown.

Objectives: We identified the functional capacities and interactions related to chopsticks or spoon use in patients with right hemiplegia following stroke.

Methods: Participants were 139 stroke patients with right hemiplegia who required rehabilitation, divided into the following three categories: able to use chopsticks, able to use a spoon, or unable to use a spoon. We collected sociodemographic data, medical data, physical and cognitive function data, and functional grades associated with chopsticks or spoon use by the paretic dominant UE while eating. We identified a complex interaction of variables relating to functional use of chopsticks or a spoon using a classification and regression tree analytic process.

Results: Patients with UE Brunnstrom recovery stage (BRS) >IV, and a Hasegawa Dementia Scale – Revised (HDS-R) score >16 had a 91.3% probability of being able to use chopsticks. Moreover, patients with a UE BRS of >IV, and the HDS-R score ≤16 had a 66.7% probability of being able to use a spoon. By contrast, patients with a UE BRS of ≤IV had a 90.5% probability of not being able to use a spoon.

Conclusions: The interaction of BRS as a measure of UE function and HDS-R score as a measure of cognitive function affect the ability of patients with stroke histories to functionally use the paretic UE to operate chopsticks or a spoon.     

The lived experience of behaviours of concern: A qualitative study of men with traumatic brain injury

Background and aims: Behaviours of Concern (BoC) are a debilitating consequence of Traumatic Brain Injury (TBI). Whilst perspectives of clinicians, carers and family members on BoC have been previously explored, few qualitative studies have included individuals with TBI. The aim of this study was to explore the lived experience of BoC in individuals with TBI, their close others and clinicians.

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.