Introduction
People should have access to healthcare services that are effective, safe and secure, patient‐centred, and coordinated and continuous. One group that has consistently reported negative ...experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.
Methods
We conducted in‐depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3–30 years), and severity.
Results
Four main themes were developed: (1) ‘Nonexistent services’ cover patients’ experience that healthcare services had nothing to offer them after receiving their ME/CFS‐diagnosis. (2) ‘Nonpersonalised services’ documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient's need. (3) ‘Slow services’ address patients’ experience of getting services too late (or too little) to be useful. (4) ‘Wrong services’ comprise patients’ experiences of being offered and/or ‘forced’ to accept services that they felt were inappropriate for their health problems.
Conclusions
Providers’ lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers’ belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users’ unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers’ perspectives on caregiving and the barriers they experience for providing high‐quality care.
Patient or Public Contribution
The ME‐patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.
Cognitive problems are common in people with Multiple Sclerosis (MS), and researchers and clinicians have used a vast array of measures to assess cognition. Our aim was to systematically identify ...cognitive measures routinely used in MS research, and outline their different uses. Previous recommendations of cognitive measures to use in MS have relied on expert consensus approaches. We believe this systematic review is a starting point for an evidence-based approach to recommend cognitive tests for use with people with MS. We systematically searched electronic databases using relevant search terms for studies that assessed cognitive functioning in MS (last search in February 2020). From 11,854 abstracts retrieved, based on title and abstract review, 2563 remained. Data were extracted from 1526 studies. Studies used 5665 measures of cognition, with 316,053 people with MS. Substitutional style tests, serial addition tests, and word list learning tests were the most commonly used individual tests, and the Brief Repeatable Battery of Neuropsychological Tests was the most commonly used battery. Some of the most frequently used measures were potentially inappropriate due to measuring irrelevant domains of cognition, and issues with sensitivity. Further research is needed to ascertain the psychometric properties, and acceptability of measures for people with MS.
Celotno besedilo
Dostopno za:
BFBNIB, DOBA, FSPLJ, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Objective:
This review aimed to determine the effectiveness of personal smart technologies on outcomes in adults with acquired brain injury.
Data sources:
A systematic literature search was conducted ...on 30 May 2019. Twelve electronic databases, grey literature databases, PROSPERO, reference list and author citations were searched.
Methods:
Randomised controlled trials were included if personal smart technology was used to improve independence, goal attainment/function, fatigue or quality of life in adults with acquired brain injury. Data were extracted using a bespoke form and the TIDieR checklist. Studies were graded using the PEDro scale to assess quality of reporting. Meta-analysis was conducted across four studies.
Results:
Six studies met the inclusion criteria, generating a total of 244 participants. All studies were of high quality (PEDro ⩾ 6). Interventions included personal digital assistant, smartphone app, mobile phone messaging, Neuropage and an iPad. Reporting of intervention tailoring for individual needs was inconsistent. All studies measured goal attainment/function but none measured independence or fatigue. One study (n = 42) reported a significant increase in memory-specific goal attainment (p = 0.0001) and retrospective memory function (p = 0.042) in favour of the intervention. Another study (n = 8) reported a significant increase in social participation in favour of the intervention (p = 0.01). However, our meta-analyses found no significant effect of personal smart technology on goal attainment, cognitive or psychological function.
Conclusion:
At present, there is insufficient evidence to support the clinical benefit of personal smart technologies to improve outcomes in acquired brain injury. Researchers need to conduct more randomised studies to evaluate these interventions and measure their potential effects/harms.
Objective
To describe the process of developing a job retention vocational rehabilitation intervention for people with multiple sclerosis.
Design
We used the person-based approach, to develop ...interventions through an iterative process incorporating stakeholders’ views, resulting in an intervention that is likely to be more acceptable, contextually relevant, and implementable for end-users. Phase 1 combined the results of a systematic review and interview study to develop the guiding principles and intervention logic model. Phase 2 involved conceptual testing and refining the intervention with stakeholder feedback. We present the final intervention following the template for intervention description and replication.
Participants
We recruited 20 participants for Phase 1 (10 people with multiple sclerosis, four employers, six healthcare professionals), and 10 stakeholders (three people with multiple sclerosis, seven healthcare professionals) for Phase 2 to contribute to the intervention refinement process.
Results
Stakeholders described the need for an individually tailored intervention to support people with multiple sclerosis to manage symptoms and workplace relationships. A stepped-care approach and remote support were deemed essential. The resulting intervention involves an initial assessment of employment needs, vocational goal setting, up to 10 h of tailored support (e.g., reasonable adjustments, employer engagement, legal rights), and a final review to discuss future steps. People with multiple sclerosis can include their employer for advice to optimise the management of the employee with multiple sclerosis at work.
Conclusion
The person-based approach provided a rigorous framework to systematically understand the vocational needs of people with multiple sclerosis and develop a vocational rehabilitation intervention.
Background
Care staff supporting people with intellectual disabilities (PWID) report accepting views on PWID's sexual expression, but people with intellectual disabilities report their sexual ...expression is restricted by care staff.
Methods
We recruited a panel of 17 UK clinical psychologists experienced in helping care staff support PWID's sexual expression. We used the Delphi Method to develop consensus‐based practice guidelines for UK clinical psychologists supporting care staff in this way.
Results
Having proposed three guidelines each in Round One, panel members reached consensus (≥90% agreement) that 12 were important, falling under four themes: “Addressing staff attitudes,” “Addressing uncertainty about rights and responsibilities of people with intellectual disabilities,” “Locating the problem, being part of the solution,” and “Supporting care staff to understand and reflect upon their role.”
Conclusions
Clinical psychologists help care staff support PWID's sexual expression by normalizing care staff concerns, encouraging reflection, clarifying PWID's rights, and prompting those at managerial and service level to support care staff.
Rehabilitation is an essential aspect of symptomatic and supportive treatment for people with multiple sclerosis (MS). The number of randomised controlled trials (RCTs) for rehabilitation ...interventions in MS has increased over the last two decades. The design, conduct and reporting quality of some of these trials could be improved. There are, however, some specific challenges that researchers face in conducting RCTs of rehabilitation interventions, which are often ‘complex interventions’. This paper explores some of the challenges of undertaking robust clinical trials in rehabilitation. We focus on issues related to (1) participant selection and sample size, (2) interventions – the ‘dose’, content, active ingredients, targeting, fidelity of delivery and treatment adherence, (3) control groups and (4) outcomes – choosing the right type, number, timing of outcomes, and the importance of defining a primary outcome and clinically important difference between groups. We believe that by following internationally accepted RCT guidelines, by developing a critical mass of MS rehabilitation ‘trialists’ through international collaboration and by continuing to critique, challenge, and develop RCT designs, we can exploit the potential of RCTs to answer important questions related to the effectiveness of rehabilitation interventions.
Background
Diagnosing multiple sclerosis (MS) can be a lengthy process, which can negatively affect psychological well‐being, condition management, and future engagement with health services. ...Therefore, providing timely and appropriate emotional support may improve adjustment and health outcomes.
Purpose
To develop a patient care pathway for providing emotional support around the point of diagnosing MS, and to explore potential barriers and facilitators to delivery and implementation.
Methods
Focus groups were conducted with 26 stakeholders, including 16 people living with MS, 5 carers/family members and 5 professionals working with people living with MS (3 MS nurses, 1 psychiatrist, and 1 charity staff member). Discussions were audio‐recorded, transcribed verbatim and analyzed using framework analysis.
Results
Participants suggested that a patient care pathway should include comprehensive information provision as a part of emotional support at diagnosis, and follow‐up sessions with a healthcare professional. Barriers including increasing staff workloads and financial costs to health services were acknowledged, thus participants suggested including peer support workers to deliver additional emotional support. All participants agreed that elements of a care pathway and embedded interventions should be individually tailored, yet provided within a standardized system to ensure accessibility.
Conclusions
A patient care pathway was developed with stakeholders, which included an embedded MS Nurse support intervention supplemented with peer support sessions. Participants suggested that the pathway should be delivered within a standardized system to ensure equity of service provision across the country.
Patient or Public Contribution
This research was conceptualized and designed collaboratively with Nottingham Multiple Sclerosis Patient and Public Involvement and Engagement (PPIE) group members. One member is a co‐author and was actively involved in every key stage of the research process, including co‐design of the pathway and research protocol, data collection (including presenting to participants and moderating group discussions), analysis and write‐up. Authors consulted with PPIE members at two meetings (9 and 11 PPIE attendees per meeting) where they gave feedback on the research design, findings and the resulting pathway. People living with MS and carers of people with MS were included in the focus groups as participants.
Objectives
The primary objective was to gain insight into the lived experiences of using day-to-day strategies to manage post-stroke fatigue.
Design
Qualitative, descriptive study.
Setting
Community ...telephone interviews.
Participants
A purposive sample of 20 stroke survivors with current, or previous, post-stroke fatigue, and 8 caregivers, who provided informal care or support, were recruited.
Main Measures
Semi-structured telephone interviews were undertaken. Data were analysed using a framework approach.
Results
Most participants had found their own ways of coping and their personal strategies included acceptance of having fatigue; ‘pacing’ (spreading activities out and interspersing with rest periods); keeping a diary in order to plan activities and to identify ‘trigger’ activities which induced fatigue; talking to (and educating) others about having fatigue; using relaxation; and accessing professional advice and support. The burden placed on caregivers was considerable and they often had to oversee the post-stroke fatigue management strategies used.
Conclusions
Post-stroke fatigue is managed in different ways and there was not one particular strategy that seemed effective for everyone. Most people in our study had had to devise their own ways of coping practically. Given the scale of this problem, which profoundly impacts the lives of both stroke survivors and caregivers, the management of post-stroke fatigue merits more attention and evaluation. However, this must be directly informed by those with lived experience.
Objective
To establish the effectiveness of relaxation and related therapies in treating Multiple Sclerosis related symptoms and sequelae.
Data Sources
PsycINFO, PubMed, Embase, CINAHL, ProQuest ...Dissertations and Theses Global databases were searched.
Methods
We included studies from database inception until 31 December 2021 involving adult participants diagnosed with multiple sclerosis or disseminated sclerosis, which featured quantitative data regarding the impact of relaxation interventions on multiple sclerosis-related symptoms and sequelae. Studies which examined multi-modal therapies - relaxation delivered in combination with non-relaxation interventions - were excluded. Risk of bias was assessed using the Revised Risk of Bias tool for randomised trials – ROB2, Risk of Bias in Non-Randomised Studies of Interventions ROBINS-I), and within and between-group effects were calculated (Hedges’ g).
Results
Twenty-eight studies met inclusion criteria. Twenty-three of these were randomised controlled trials, with 1246 total participants. This review reports on this data, with non-randomised study data reported in supplemental material. Post –intervention relaxation was associated with medium to large effect-size improvement for depression, anxiety, stress and fatigue. The effects of relaxation were superior to wait-list or no treatment control conditions; however, comparisons with established psychological or physical therapies were mixed. Individual studies reported sustained effects (≤ 6 months) with relaxation for stress, pain and quality of life. Most studies were rated as having a high/serious risk of bias.
Conclusion
There is emerging evidence that relaxation therapies can improve outcomes for persons with multiple sclerosis. Given the high risk of bias found for included studies, stronger conclusions cannot be drawn.
Objectives
This systematic literature review investigated the inter‐rater and test–retest reliability of case formulations. We considered the reliability of case formulations across a range of ...theoretical modalities and the general quality of the primary research studies.
Methods
A systematic search of five electronic databases was conducted in addition to reference list trawling to find studies that assessed the reliability of case formulation. This yielded 18 studies for review. A methodological quality assessment tool was developed to assess the quality of studies, which informed interpretation of the findings.
Results
Results indicated inter‐rater reliability mainly ranging from slight (.1–.4) to substantial (.81–1.0). Some studies highlighted that training and increased experience led to higher levels of agreement. In general, psychodynamic formulations appeared to generate somewhat increased levels of reliability than cognitive or behavioural formulations; however, these studies also included methods that may have served to inflate reliability, for example, pooling the scores of judges. Only one study investigated the test–retest reliability of case formulations yielding support for the stability of formulations over a 3‐month period.
Conclusions
Reliability of case formulations is varied across a range of theoretical modalities, but can be improved; however, further research is required to strengthen our conclusions.
Practitioner points
Clinical implications
The findings from the review evidence some support for case formulation being congruent with the scientist‐practitioner approach.
The reliability of case formulation is likely to be improved through training and clinical experience.
Limitations
The broad inclusion criteria may have introduced heterogeneity into the sample, which may have affected the results.
Studies reviewed were limited to peer‐reviewed journal articles written in the English language, which may represent a source of publication and selection bias.
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