A pilot randomised controlled trial of an internet-based cognitive behavioural therapy self-management programme (MS Invigor8) for multiple sclerosis fatigue

The majority of people affected by Multiple Sclerosis (PaMS) experience severe and disabling fatigue. MS Fatigue is poorly understood and most existing treatments have limited effectiveness. However, a recent randomised controlled trial (RCT) showed that cognitive-behaviour therapy with a clinical psychologist was effective in reducing MS fatigue severity and impact. The current study developed an Internet-based version of this intervention to make it available to a wider group of PaMS and conducted preliminary investigations of its efficacy, feasibility and cost-effectiveness in a pilot RCT. The ‘MS Invigor8’ website was developed using agile design and substantial input from PaMS. The programme includes eight online tailored and interactive sessions along with homework tasks, intended to be accessed weekly. In the pilot trial, 40 patients were randomised to MS Invigor8 (n=23) or standard care (n=17). The MS Invigor8 group accessed sessions over 8-10 weeks and received up to three 30-50 minute telephone support sessions. Participants completed online questionnaires assessing fatigue, mood and quality of life at baseline and 10 weeks follow-up. Large between group treatment effects were found for the primary outcomes of fatigue severity (d=1.19) and impact (d =1.22). The MS Invigor8 group also reported significantly greater improvements in anxiety and depression. Analysis suggested that the intervention may be cost-effective. Qualitative feedback suggested that participants considered this treatment approach acceptable and helpful. Technical website problems negatively affected some users’ experiences and need to be resolved. Given the promising results a larger RCT with longer term follow-up is warranted. <br/

How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study

Background: Disease progression in multiple sclerosis (MS) is highly variable and predicting prognosis is notoriously challenging. Patients’ prognosis beliefs, responses to prognostic uncertainty and experiences of prognosis-related communication with healthcare professionals (HCPs) have received little study. These issues have implications for patients’ psychological adjustment and are important in the context of the recent development of personalised prognosis forecasting tools. This study explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication. Methods: 15 MS patients participated in in-depth semi-structured interviews which were analysed using inductive thematic analysis. Results: Six themes captured key aspects of the data: Experiencing unsatisfactory communication with HCPs, Appreciating and accepting prognostic uncertainty, Trying to stay present-focused, Forming and editing personal prognosis beliefs, Ambivalence towards forecasting the future, and Prognosis information delivery. MS patients report having minimal communication with HCPs about prognosis. Over time MS patients appear to develop expectations about their disease trajectories, but do so with minimal HCP input. Provision of prognosis information by HCPs seems to run counter to patients’ attempts to remain present-focused. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of circumscribed usefulness.Conclusions: HCPs must carefully consider whether, when and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited HCP-patient communication, distinguish predictors of patients’ attitudes towards prognostication and identify circumstances under which prognostic forecasting benefits patients. <br/

Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers:a qualitative interview study

OBJECTIVE: We aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being. DESIGN: Qualitative study using semi-structured interviews with people with MND and caregivers. SETTING: Participants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability. PARTICIPANTS: 25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis. DATA ANALYSIS: Data were analysed using inductive reflexive thematic analysis. RESULTS: Eight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being. CONCLUSION: The study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion

The Effectiveness of the Sheriff\u27s Department\u27s Juvenile Diversion Projects in Southeast Los Angeles County (CA)

The major message of this report is that juvenile diversion, as practiced by the three Sheriff\u27s Department Projects in southeast Los Angeles County, appears to be quite successful. The accomplishments of these three projects were assessed with regard to two primary goals: 1. Reduction of the number of juveniles referred further into the juvenile justice system (probation and the courts) by law enforcement. 2. Reduction of the incidence of juvenile delinquency among youthful offenders subsequent to diversion. 1. The pattern of findings reviewed in this report provide convincing evidence that both these goals are being met. The highlights of that evidence are as follows: a. With the inception of the diversion projects in 1976, the number of diversions from the participating law enforcement stations increased substantially. b. The majority of the juveniles selected for diversion would probably have been referred to the Probation Department on non-detained petition applications if diversion had not been available; only a minority would have been counseled and released. c. The records of the sheriff\u27s stations participating in the diversion projects showed that they sent fewer non-detained petition applications to the Probation Department after the projects began operations

Formation, Persistence, and Recovery of Glass Sponge Reefs: A Case Study

Glass sponge reefs (bioherms) are known to occur on glacial deposits but have not previously been observed to develop on fjord bedrock ridges. It is assumed that sexual reproduction dominates reef recruitment and that sedimentation can cover intact sponge skeletons. Over a decade of scuba diving research at a small fjordic bioherm, including installation of bar-coded marker stakes, transplants of loose fragments and survey transects of substrate depth with an avalanche probe have led to new insights into the dynamics of bioherm formation and persistence. We present evidence for recovery of sponge growth from scree slopes of collapsed fragments and logged the temporal changes associated with sponge fragmentation and recovery. Bar-coded stakes were installed in 2014 to enable verification of location and sponge identity through time. Photo documentation of growth, collapse, and regrowth is presented. Research on a sponge garden on glacial sediments reveals that earliest sedimentation may center around prostrate boot sponges and bristly tunicates among the cloud and vase sponges. Although hexactinellid boot sponges do not contribute to the geologic base of bioherms, they may take part as a successional community in the substrate conditioning that could result in the genesis of a glass sponge reef or bioherm

Navigating pregnancy and early motherhood in prison: a thematic analysis of mothers’ experiences

BACKGROUND: Maternal imprisonment negatively impacts mothers and their children and is likely to have lifelong and intergenerational sequelae. In many jurisdictions nationally and internationally, young children (usually those less than 5 years) can reside with their mothers in prison. However, there is considerable debate regarding the impact of prison environments on incarcerated mothers and their children who are born, and/or raised in prison. Research to date on the pregnancy and mothering experiences of imprisoned mothers and their preferences for care arrangements for their babies and young children is limited. METHODS: This study was part of the Transforming Corrections to Transform Lives project, in which workshops were conducted with imprisoned mothers to understand their needs while in custody and post-release, and the kind of supports and system changes that are required to meet those needs. Incarcerated mothers (n = 75) participated in seven workshops conducted across four Queensland prisons. Themes were generated through reflexive thematic analysis. RESULTS: Three themes characterised mothers’ experiences of being pregnant and undertaking a mothering role of a young child while in prison. First, for most mothers, imprisonment adds vulnerability and isolation during pregnancy and childbirth. Second, although mothers felt that residing together with their children in prison motivated them to change for a better future, they were concerned about the potential negative impact of the prison environment on the child’s development. Lastly, most mothers voiced losing autonomy and agency to practice motherhood independently within custodial settings. Mothers expressed a need for the correctional system to be adapted, so it is better equipped to address the unique and additional needs of mothers with young children. CONCLUSION: Mothers’ experiences indicated that the correctional system and policies, which were predominantly designed for men, do not adequately address the varied and complex needs of pregnant women, mothers, and their young children. Imprisonment of pregnant women and mothers with young children should be the last resort, and they should be provided with holistic, individually tailored support, most preferably in community settings, to address their multiple intersecting needs. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40352-022-00196-4

Patient perceptions of vulnerability to recurrent respiratory tract infections and prevention strategies:a qualitative study

Objectives Respiratory tract infections (RTIs) are extremely common, usually self-limiting, but responsible for considerable work sickness absence, reduced quality of life, inappropriate antibiotic prescribing and healthcare costs. Patients who experience recurrent RTIs and those with certain comorbid conditions have higher personal impact and healthcare costs and may be more likely to suffer disease exacerbations, hospitalisation and death. We explored how these patients experience and perceive their RTIs to understand how best to engage them in prevention behaviours. Design A qualitative interview study. Setting Primary care, UK. Methods 23 participants who reported recurrent RTIs and/or had relevant comorbid health conditions were interviewed about their experiences of RTIs. Interviews took place as the COVID-19 pandemic began. Data were analysed using inductive thematic analysis. Results Three themes were developed: Understanding causes and vulnerability, Attempting to prevent RTIs, Uncertainty and ambivalence about prevention, along with an overarching theme; Changing experiences because of COVID-19. Participants' understandings of their susceptibility to RTIs were multifactorial and included both transmission via others and personal vulnerabilities. They engaged in various approaches to try to prevent infections or alter their progression yet perceived they had limited personal control. The COVID-19 pandemic had improved their understanding of transmission, heightened their concern and motivation to avoid RTIs and extended their repertoire of protective behaviours. Conclusions Patients who experience frequent or severe RTIs are likely to welcome and benefit from advice and support regarding RTI prevention. To engage people effectively, those developing interventions or delivering health services must consider their beliefs and concerns about susceptibility and prevention.</p

Using nasal sprays to prevent respiratory tract infections: A qualitative study of online consumer reviews and primary care patient interviews

OBJECTIVES: Nasal sprays could be a promising approach to preventing respiratory tract infections (RTIs). This study explored lay people’s perceptions and experiences of using nasal sprays to prevent RTIs to identify barriers and facilitators to their adoption and continued use. DESIGN: Qualitative research. Study 1 thematically analysed online consumer reviews of an RTI prevention nasal spray. Study 2 interviewed patients about their reactions to and experiences of a digital intervention that promotes and supports nasal spray use for RTI prevention (reactively: at ‘first signs’ of infection and preventatively: following possible/probable exposure to infection). Interview transcripts were analysed using thematic analysis. SETTING: Primary care, UK. PARTICIPANTS: 407 online customer reviews. 13 purposively recruited primary care patients who had experienced recurrent infections and/or had risk factors for severe infections. RESULTS: Both studies identified various factors that might influence nasal spray use including: high motivation to avoid RTIs, particularly during the COVID-19 pandemic; fatalistic views about RTIs; beliefs about alternative prevention methods; the importance of personal recommendation; perceived complexity and familiarity of nasal sprays; personal experiences of spray success or failure; tolerable and off-putting side effects; concerns about medicines; and the nose as unpleasant and unhygienic. CONCLUSIONS: People who suffer disruptive, frequent or severe RTIs or who are vulnerable to RTIs are interested in using a nasal spray for prevention. They also have doubts and concerns and may encounter problems. Some of these may be reduced or eliminated by providing nasal spray users with information and advice that addresses these concerns or helps people overcome difficulties

Protocol for the saMS trial (supportive adjustment for multiple sclerosis): a randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis

BackgroundMultiple Sclerosis (MS) is an incurable, chronic, potentially progressive and unpredictable disease of the central nervous system. The disease produces a range of unpleasant and debilitating symptoms, which can have a profound impact including disrupting activities of daily living, employment, income, relationships, social and leisure activities, and life goals. Adjusting to the illness is therefore particularly challenging. This trial tests the effectiveness of a cognitive behavioural intervention compared to supportive listening to assist adjustment in the early stages of MS.MethodsThis is a two arm randomized multi-centre parallel group controlled trial. 122 consenting participants who meet eligibility criteria will be randomly allocated to receive either Cognitive Behavioral Therapy or Supportive Listening. Eight one hour sessions of therapy (delivered over a period of 10 weeks) will be delivered by general nurses trained in both treatments. Self-report questionnaire data will be collected at baseline (0 weeks), mid-therapy (week 5 of therapy), post-therapy (15 weeks) and at six months (26 weeks) and twelve months (52 weeks) follow-up. Primary outcomes are distress and MS-related social and role impairment at twelve month follow-up. Analysis will also consider predictors and mechanisms of change during therapy. In-depth interviews to examine participants’ experiences of the interventions will be conducted with a purposively sampled sub-set of the trial participants. An economic analysis will also take place. DiscussionThis trial is distinctive in its aims in that it aids adjustment to MS in a broad sense. It is not a treatment specifically for depression. Use of nurses as therapists makes the interventions potentially viable in terms of being rolled out in the NHS. The trial benefits from incorporating patient input in the development and evaluation stages. The trial will provide important information about the efficacy, cost-effectiveness and acceptability of the interventions as well as mechanisms of psychosocial adjustment.Trial registrationCurrent Controlled Trials ISRCTN91377356<br/