A meta-synthesis of qualitative research on perceptions of people with long-term neurological conditions about group-based memory rehabilitation

The effectiveness of memory rehabilitation based on randomised controlled trials and meta-analyses has been inconclusive, but patient reports based on qualitative studies have been largely positive. We conducted a meta-synthesis of qualitative studies of group-based memory rehabilitation programmes for people with neurological conditions. Based on systematic searches of electronic databases and reference lists, five papers (87 participants) were selected. Quality appraisal of papers was conducted by two independent reviewers using the Critical Appraisal Skills Programme tool. Data synthesis was guided by the meta-ethnography approach. Five higher order themes were elicited. These suggested that memory rehabilitation was associated with insight and acceptance of participants' neurological condition and resultant cognitive deficits. The therapeutic effects of the groups, with social support and leisure activities, helped with participants' confidence. There were improvements in memory related to better self-awareness and learning to use new skills and strategies to compensate for memory deficits. These improvements also related to other psychological effects, in terms of positively affected mood, confidence and fatigue. Ultimately, these changes had a positive impact on daily life, with changes seen in the personal, inter-personal and professional spheres. Therefore, this synthesis of qualitative studies suggests that memory rehabilitation offers positive outcomes for people with long-term neurological conditions.     

Everyday memory measures in multiple sclerosis: a systematic review

ABSTRACT

Everyday memory is one of the most affected cognitive functions in multiple sclerosis (MS). Assessing everyday memory problems is crucial for monitoring the impact of memory deficits on individuals’ day-to-day lives and evaluating the effectiveness of interventions that aim to improve cognitive functions. The aim of this systematic review was to identify the research literature on everyday memory measures used with people with MS, describe the types of measures used, and summarise their psychometric properties. Empirical studies of cognitive function in MS using standardised everyday memory measures were included. Online databases (MEDLINE, PsycINFO, PsycARTICLES, Embase) and Google Scholar were searched. Forty-four studies met the inclusion criteria. A total of 12 measures were identified, with varied uses and administration methods. The majority of papers did not report any psychometric properties for MS populations. The few papers that did, reported that the measures have good reliability and appear to have good face, concurrent, and ecological validity, but these need to be evaluated further. This review presents researchers and clinicians with an overview of the various everyday memory measures used in studies with people with MS, to help them choose the appropriate measure for their evaluations.     

What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis

The aim of the meta-synthesis was to determine any difficulties experienced by caregivers relating to the sexuality of people with intellectual disabilities and how they address those difficulties. A qualitative meta-synthesis was used to integrate the findings from 17 papers about these topics. The synthesis produced five concepts: ‘Fear and Uncertainty’, ‘Impact of Perceptions of Sexuality’, ‘The Same and Different’, ‘Balancing the Roles of Protector and Facilitator’ and ‘Conditional Sexuality: Conditional Support’. The findings suggest key issues for caregivers in relation to addressing the sexual needs of people with intellectual disabilities and highlight the possible implications of caregivers own views on their practice. These issues are discussed and in conclusion the review offers explanations about what the difficulties for caregivers are and how they might be addressed, as well as recommendations for future research.     

Experiences of pathways to mental health services for young people and their carers: a qualitative meta-synthesis review

Worldwide, growing concern with young people’s mental health is spurring service reform efforts. Such reform requires a full understanding of the experiences of young people and their carers when seeking mental health help. To generate such an understanding, we conducted a meta-synthesis of qualitative literature on the perspectives of youths and their carers on navigating mental health systems. Five electronic databases were searched (Medline, PsycINFO, EMBASE, CINAHL, HealthSTAR). Studies were included if they explored the experiences of pathways to mental health services of persons aged 11–30 years and/or their carers; were published in English or French; and used qualitative methodology. Quality appraisal was conducted using the CASP tool. The synthesis of 31 included studies yielded three themes—initiating contact with mental health services; characteristics of services’ response; and youths’ and carers’ appraisal of services. Themes about initiating contact included mental health literacy, structural barriers, and social support. Service response-related themes included complex pathways, waitlists, eligibility, and fragmented care. In terms of service appraisal, positive encounters featured providers who were accessible and perceived as caring. Negative appraisals resulted from feeling misunderstood and excluded and being ill-informed about treatment. Across diagnoses and settings, youths and carers had difficult experiences accessing mental healthcare. While individual, social, and healthcare factors shaping pathways to care varied, systemic complexities were a common inhibitor. This synthesis informs recommendations for improving mental health services and youths’ pathways to them. It underlines the need for grounding reform in youths’ and carers’ perspectives and needs.

     

The role of reading on the health and well-being of people with neurological conditions: a systematic review

Objectives: Little research has been conducted that investigates the benefits of reading for people with neurological conditions despite its age old use to improve well-being. The aim of this study was to identify and review the evidence of the effect of ‘lone’ reading, reading aloud and shared reading groups on the health and well-being of people with neurological conditions in clinical and long-term care settings.Methods: A literature search was conducted incorporating a systematic search of electronic databases, internet searching, ‘snowballing’ technique from references of relevant studies and consultation with clinicians and academics in the field.Results: Twelve studies (five quantitative, three qualitative and four mixed methods) met the criteria for inclusion in the review. No randomised controlled trials were identified. Significant heterogeneity in the results of the quantitative studies precluded statistical data synthesis. Thematic analysis and synthesis was applied to the three qualitative studies and the qualitative data of the mixed-method studies. All but one of the quantitative studies reported that the reading interventions had a positive effect. The evidence from the qualitative studies demonstrated multiple positive effects of shared reading groups.Conclusions: The effect of ‘lone’ reading, reading aloud and shared reading groups on the health and well-being of people with neurological conditions is currently an under-researched area. Although this review reports encouraging results of positive effects, the results should be viewed with caution due to the lack of randomisation, the small numbers of participants involved, and the limited and heterogeneous evidence base.     

The effectiveness of memory rehabilitation following neurological disabilities: A qualitative inquiry of patient perspectives

The evidence for the effectiveness of memory rehabilitation following neurological conditions, mainly studied through quantitative methodologies, has been equivocal. This study aimed to examine feedback from participants who had been through a randomised controlled trial (RCT) comparing two types of memory rehabilitation with a self-help control. It was envisaged that this information would offer a detailed understanding of patient experience of going through a trial and the perceived effects of having attended group sessions. Through 31 in-depth interviews, data collected were thematically analysed. The seven themes identified highlighted improvements in insight and awareness of memory problems and their neurological conditions, knowledge and skills about using memory aids; and as a consequence, improvements in cognitive functions, mood, and confidence, assertiveness and control over their condition. Participants also reported an altered perspective of life that helped them deal with their problems, and the therapeutic effects of attending group sessions. While these improvements were mainly reported in the intervention groups, even those in the control group reported some benefits. This study highlights that it is both feasible and advantageous to embed qualitative research within the traditional RCT methodology to arrive at a more nuanced understanding of patient experiences and intervention outcomes.     

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Objective: Little is known about how and to what extent people with dementia live positively with their condition. This study aimed to review and carry out a synthesis of qualitative studies where accounts of the subjective experiences of people with dementia contained evidence of positive states, experiences or attributes.

Methods: A meta-synthesis was undertaken to generate an integrated and interpretive account of the ability of people with dementia to have positive experiences. A methodological quality assessment was undertaken to maximize the reliability and validity of this synthesis and to contextualize the findings with regard to methodological constraints and epistemological concepts.

Findings: Twenty-seven papers were included. Three super-ordinate themes relating to positive experiences and attributes were identified, each with varying and complementing sub-themes. The first super-ordinate theme related to the experience of engaging with life in ageing rather than explicitly to living with dementia. The second theme related to engaging with dementia itself and comprised the strengths that people can utilize in facing and fighting the condition. The third theme captured how people with dementia might transcend the condition and seek ways to maintain identity and even achieve personal growth.

Conclusions: This review provides a first step towards understanding what conceptual domains might be important in defining positive outcomes for people who live with dementia. Highlighting the potential for people to have positive experiences in spite of or even because of their dementia has important implications for de-stigmatizing dementia and will enhance person-centred approaches to care.     

Treating learning impairments improves memory performance in multiple sclerosis: a randomized clinical trial

This randomized clinical trial utilized established techniques to improve new learning and memory performance in multiple sclerosis (MS) participants with learning impairment. Participants were 29 individuals with clinically definite MS with documented learning deficits, randomly assigned to the experimental or control group. The experimental group underwent eight sessions of the Story Memory Technique (SMT), while the control group participated in eight sessions of memory exercises. Neuropsychological assessment was conducted at baseline, immediately following treatment and 5 weeks later to assess outcome. When stratifying participants by degree of learning deficits, a significant treatment effect was noted. MS participants with moderate-severe impairment in learning showed a significant improvement in learning abilities when compared to controls, (t(19) =3.32, P<0.01) evident in 88% of participants in the experimental group. Little improvement was noted in MS participants with mild learning impairments. Significant self-reported improvements in memory were noted in MS participants that underwent treatment, but not those that did not undergo treatment (t(26) =2.55, P<0.01). Results indicate that learning and memory deficits in MS can be effectively treated through a memory rehabilitation program utilizing context and imagery to improve new learning. Appropriate patient selection is important, with moderately-severely impaired individuals showing significantly greater benefit from treatment.     

Neurocognitive rehabilitation for schizophrenia

A critical review of randomized, controlled trials of extended programs of neurocognitive rehabilitation for the cognitive deficits characteristic of schizophrenia conducted between the years 2000 to 2002 was completed. Over the past several years, two models of cognitive rehabilitation have emerged. In one model, labeled “cognitive remediation,” cognitive deficits are treated directly through repeated practice and acquisition of compensatory strategies on cognitive exercises designed to engage underfunctioning brain systems. In a second model, labeled “cognitive adaptation,” neurocognitive deficits are addressed through modification of the patients’ environment to allow patients to bypass their deficits. Results revealed that a range of cognitive remediation strategies varying widely along dimensions of duration, intensity, method, target of behavioral intervention, and clinical status of participants produced improvements on measures of working memory, emotion perception, and executive function distinct from those trained during remediation. No effects were evident in secondary verbal or nonverbal memory. Results of two pilot studies using functional magnetic resonance imaging to assess changes in task-evoked brain activation have revealed that these interventions may produce changes in several functionally relevant neural systems in a subset of patients. Results from studies of standardized cognitive adaptation interventions have indicated that these treatments can produce improvements in symptoms, psychosocial status, and relapse rates. A variety of approaches for future research are also discussed.     

Cognitive rehabilitation in multiple sclerosis: a review of the literature

Introduction

Cognitive impairment is now well-known in multiple sclerosis (MS). However, few rehabilitation interventions are proposed or really efficient.

Objectives

To present a review of cognitive rehabilitation intervention research conducted in people with multiple sclerosis (MS), regarding different findings about episodic memory, working memory, attention and executive function disorders in MS.

Data sources

A search of Medline (yield 20 papers) and of PsychInfo (yield 1 article), using combinations of the following terms: cognitive rehabilitation, multiple sclerosis, cognitive therapy, neuropsychological rehabilitation, in the title or in the abstract, from 1960 to March 2010, excluding animal studies.

Results

Episodic memory rehabilitation studies appear to be promising. Programs on working memory, attention and executive functions are in the very early phases.

Conclusions

Results are encouraging and allow specific recommendations for future research about: (1) inclusion criteria, often not defined, (2) a specific baseline adapted to the program of rehabilitation, (3) a control measure regarding program efficiency and (4) a role for the psychologist (presence and advice during the program).     

Charles Bonnet syndrome: visual hallucination and multiple sclerosis

Multiple sclerosis (MS) is a fairly common condition that affects approximately 350,000 people in the United States. It is associated with various neuropsychiatric symptoms including cognitive and behavioral symptoms. However, visual hallucinations are rare in multiple sclerosis without the presence of cognitive deficits. We are describing the case of a 40-year-old married white female with isolated complex visual hallucinations compatible with the Charles Bonnet syndrome (CBS). The patient was successfully treated with the atypical antipsychotic olanzapine.     

Disclosure of domestic violence in mental health settings: A qualitative meta-synthesis

Abstract

Little is known about how psychiatric services respond to service users’ experiences of domestic violence. This qualitative meta-synthesis examined the healthcare experiences and expectations of mental health service users experiencing domestic violence. Twenty-two biomedical, social science, grey literature databases and websites were searched, supplemented by citation tracking and expert recommendations. Qualitative studies which included mental health service users (aged ≥ 16 years) with experiences of domestic violence were eligible for inclusion. Two reviewers independently extracted data from included papers and assessed quality. Findings from primary studies were combined using meta-synthesis techniques. Twelve studies provided data on 140 female and four male mental health service users. Themes were generally consistent across studies. Overarching theoretical constructs included the role of professionals in identifying domestic violence and facilitating disclosures, implementing personalized care and referring appropriately. Mental health services often failed to identify and facilitate disclosures of domestic violence, and to develop responses that prioritized service users’ safety. Mental health services were reported to give little consideration to the role of domestic violence in precipitating or exacerbating mental illness and the dominance of the biomedical model and stigma of mental illness were found to inhibit effective responses. Mental health services often fail to adequately address the violence experienced by mental health service users. This meta-synthesis highlights the need for mental health services to establish appropriate strategies and responses to domestic violence to ensure optimal care of this vulnerable population.     

Cognitive dysfunction in different stages in multiple sclerosis--presentation of 3 cases

Although multiple sclerosis (MS) is a physically disabling disease, many patients also suffer from cognitive dysfunction in all stages of the disease. Recent studies have demonstrated that 45 up to 65% of MS patients are cognitively impaired. The profile of MS-related cognitive dysfunction varies greatly. It includes memory and learning deficits, attention deficits, executive dysfunction and visuo-spatial deficits. Most studies of cognition in MS examined patients in later stages, often including MS patients with marked physical disabilities. Our own studies revealed cognitive dysfunction in MS patients within the early stage of disease as well. In this paper, three patients with MS in different stages and with different MRI-findings will be presented in consideration of cognitive dysfunction in particular.     

Therapist and patient perspectives on cognitive-behavioral therapy for older adults with hoarding disorder: a collective case study

Utilizing a qualitative approach, the current study explored therapist and patient perspectives on a specialized cognitive-behavioral therapy (CBT) protocol for clinically significant hoarding in older adult patients. Data were derived from the following sources: (1) therapist observation; (2) CBT consultant observation; (3) clinical treatment notes; (4) participant feedback, including a focus group; and (5) participant in-session notes and completed homework assignments. Our findings showed that the value of homework, treatment session compliance, and deficits in executive functioning (prospective memory, planning, problem solving, and cognitive flexibility) were common themes among participants as viewed by the therapist. Patients reported that exposure exercises and the therapeutic relationship were the most helpful aspects of their treatment, while cognitive strategies had limited success. Our results suggest that treatment for hoarding in older adults may be improved by focusing on exposure therapy elements, remediating executive function deficits, providing simplified homework assignments, and decreasing the emphasis or modifying cognitive restructuring techniques.     

Cognitive remediation and vocational rehabilitation

Persons with severe mental illness (SMI) who are striving to improve their work prospects are often hindered in work endeavors because of difficulties with cognitive skills, such as paying attention or concentrating, learning and remembering information, responding in a reasonable amount of time to environmental demands, and planning ahead and solving problems. In addition to limiting work functioning, cognitive impairments are obstacles to receiving the full benefits of vocational rehabilitation, including supported employment. Efforts to improve cognition in people with SMI, or cognitive remediation, have produced modest but consistent gains in a variety of cognitive domains. More recent efforts have focused on combining cognitive remediation with vocational rehabilitation in order to improve work functioning. Initial results from four published studies of combined cognitive remediation and vocational programs are encouraging, indicating improvements in both cognitive and work functioning. The approaches to cognitive remediation used in these studies vary considerably, as do the characteristics of participants, the vocational rehabilitation models, and the methods of combining cognitive and vocational therapies. The differences in key components of programs combining cognitive remediation and vocational rehabilitation indicate the need to replicate findings, and raise important questions about what aspects of the programs are associated with improvements in work.     

Patient information on cognitive symptoms in multiple sclerosis - acceptability in relation to disease duration

OBJECTIVE: Recently, regular cognitive screening assessments have been advised in multiple sclerosis (MS). No studies have been carried out yet on the acceptability of information on cognitive deficits among MS patients. MATERIALS AND METHODS: Translation of an information booklet developed by a working group of European MS Rehabilitation Centers. Distribution of the booklet among 133 MS patients of two rehabilitation units and one outpatient clinic together with a one-page questionnaire. RESULTS: The booklet was highly understandable and rated to give moderate new information. Overall, the brochure was perceived as encouraging but significantly less so (P = 0.014) in recently diagnosed patients. Patients with subjectively perceived deficits considered the brochure to be significantly more relevant (P = 0.002). CONCLUSION: Information on cognitive deficits does not increase fears even in recently diagnosed MS patients. Patients with perceived deficits found the information more relevant than others and also less familiar. Thus, it seems appropriate to offer information about cognitive impairments to MS patients.     

Memory rehabilitation for the working memory of patients with multiple sclerosis (MS)

Objective: The main cognitive impairments in multiple sclerosis (MS) affect the working memory, processing speed, and performances that are in close interaction with one another. Cognitive problems in MS are influenced to a lesser degree by disease recovery medications or treatments,but cognitive rehabilitation is considered one of the promising methods for cure. There is evidence regarding the effectiveness of cognitive rehabilitation for MS patients in various stages of the disease. Since the impairment in working memory is one of the main MS deficits, a particular training that affects this cognitive domain can be of a great value. This study aims to determine the effectiveness of memory rehabilitation on the working memory performance of MS patients.

Method: Sixty MS patients with cognitive impairment and similar in terms of demographic characteristics, duration of disease, neurological problems, and mental health were randomly assigned to three groups: namely, experimental, placebo, and control. Patients’ cognitive evaluation incorporated baseline assessments immediately post-intervention and 5 weeks post-intervention. The experimental group received a cognitive rehabilitation program in one-hour sessions on a weekly basis for 8 weeks. The placebo group received relaxation techniques on a weekly basis; the control group received no intervention.

Results: The results of this study showed that the cognitive rehabilitation program had a positive effect on the working memory performance of patients with MS in the experimental group. These results were achieved in immediate evaluation (post-test) and follow-up 5 weeks after intervention. There was no significant difference in working memory performance between the placebo group and the control group.

Conclusions: According to the study, there is evidence for the effectiveness of a memory rehabilitation program for the working memory of patients with MS. Cognitive rehabilitation can improve working memory disorders and have a positive effect on the working memory performance of these patients.     

Cognitive dysfunction in multiple sclerosis: a review of recent developments

PURPOSE OF REVIEW: Nearly half of all patients diagnosed with multiple sclerosis will develop cognitive dysfunction, a symptom associated with significant decline in activities of daily living. The purpose of this review is to discuss recent literature investigating issues related to cognitive dysfunction in multiple sclerosis. RECENT FINDINGS: Recent studies, examined in this review, have provided increased understanding regarding specific cognitive processes affected in multiple sclerosis, as well as a characterization of its natural history. Studies have also continued to emphasize the extent to which cognitive deficits in the condition are associated with decline in daily living skills. Recent concerns regarding driving performance have been documented among cognitively impaired individuals. Studies have also examined correlates of cognitive dysfunction, with particular emphasis on neuroimaging techniques reflecting disease activity or lesion burden. With increased understanding of neurobiological correlates of cognitive deficits, investigators have begun to examine potential treatments for managing cognitive dysfunction. SUMMARY: This area of research has suggested that disease modifying medications can have an impact on magnetic resonance imaging disease activity by altering the cerebral demyelinating process resulting in a slower decline in cognitive functions over time and improved activities of daily living for patients with multiple sclerosis.     

Cognitive impairment in multiple sclerosis

PURPOSE OF REVIEW: For a long time, cognitive impairment in multiple sclerosis patients has been considered less important than, for instance, physical disability. This is no longer true because of the crucial role that cognitive deficits play in the good day-to-day adjustment of patients. This review highlights recent progress made in this area. A special focus lies on studies investigating the neural correlates of cognitive impairment in multiple sclerosis patients as detectable by conventional, quantitative and functional magnetic resonance imaging. RECENT FINDINGS: Measures of information-processing speed appear to be the most robust and sensitive markers of cognitive impairment in multiple sclerosis patients. Recent studies demonstrate that single, predominantly speed-related cognitive tests may be superior to extensive and time-consuming test batteries in screening overall cognitive decline. Quantitative magnetic-resonance-imaging findings suggest the extent of subtle tissue damage in normal-appearing white and grey matter to correlate best with the severity of cognitive impairment in multiple sclerosis patients. SUMMARY: From neuropsychological test data, and findings from magnetic resonance imaging and functional magnetic resonance imaging it is evident that cognitive impairment in multiple sclerosis is not just the result of tissue destruction, but rather a balance between tissue destruction, tissue repair, and adaptive functional reorganization.