Exploring the barriers and facilitators to volunteering as an intervention for those with long‐term neurological conditions : how make therapeutic volunteering possible?

tle:8a3710a0-5af3-4875-9690-5e19ffcdd8d8:afee126f-04b2-41a9-a6dd-b29b7c6c20ab:1Background. Volunteering may have therapeutic benefits, but little is known about its requirements and potential for people with neurological conditions (pwNC). Design. Two separate focus groups were conducted in Darmstadt, Germany: one group consisting of six pwNC and another group consisting of four health care professionals and three volunteering service providers. The focus groups were audio-recorded, transcribed and data were managed using NVivo12. The thematic analysis was applied. Results. Four main themes were identified: (1) Impact of volunteering, (2) Individualisation, (3) Developmental space and (4) Funded supported volunteering. Conclusion. According to the findings, volunteering can be used as a strategy to enhance physical, mental and social well-being in disease management for people with long-term neurological conditions

Poor specificity of National Early Warning Score (NEWS) in spinal cord injuries (SCI) population: A retrospective cohort study

Study design. Retrospective chart audit. Objectives. The National Early Warning Score (NEWS) is based on seven physiological parameters which can be altered in some individuals with spinal cord injuries (SCI). The aim was to start the development of adapted NEWS suitable for SCI population. The objective was to determine the SBP NEWS specificity based on neurological level of injury (NLI) and completeness of injury. Setting. Tertiary centre in the UK. Methods. Adult patients admitted for the first time to the National Spinal Injuries Centre between 1 January 2015 and 31 December 2016 were included if they were >6 months post injury. Data were extracted retrospectively including the last ten consecutive BP and heart rate readings before discharge. Data were analysed based on different AIS grades, completeness of injury and NLI. Results. One hundred and ninety one patients were admitted in 2015 and 2016 and 142 patients were included in the primary analysis. The mean SBP ranged between 92 and 151 mmHg. Patients with the NLI of T6 and above (≥T6) motor complete lesions had a significantly lower SBP than motor incomplete lesions. The specificity of the SBP NEWS was 35.3% in ≥T6 motor complete individuals versus 80.3% in ≥T6 motor incomplete individuals. Conclusion. The baseline BP is significantly lower in the ≥T6 motor complete SCI individuals (>6 months post injury) resulting in a very low specificity of 35.3% to SBP NEWS, which could lead to mismatch between clinical deterioration and NEWS resulting in lack of timely clinical response

Positive risk-taking within social care for adults with physical disabilities : a review of guidelines in practice in England

Introduction: Despite practice guidelines, professionals do not feel confident in implementing positive risk-taking. This may be due to the guidance provided. Method: A scoping review of current organisational guidance for the professional practice of positive risk-taking within Adult Social Care services for people with a physical disability. Guidelines were obtained from Local Authorities in England in October 2020. The data were extracted using TIDieR to describe positive risk-taking as an intervention. The quality of the guidelines was assessed using AGREE II. Findings: In all, 36 Local Authorities responded out of 106 contacted. A total of 21 documents were included for review. Substantial variability was found in terminology, definitions and risk grading between documents. The greatest consistency was found in how to implement a positive risk-taking intervention. Consistency was also found in the policy that documents cited. There was little reference to evidence to support intervention components. Overall, AGREE II quality scores were low and stakeholder involvement, specifically with regard to the views and preferences of service users, was largely absent. Conclusion: There is a need for a greater consensus to guide the professional practice of positive risk-taking. Determining the extent of current evidence and establishing an evidence base may facilitate more consistent guidelines and support professionals’ confidence in implementing positive risk-taking

The psychological processes of adaptation and hope in patients with multiple sclerosis: a thematic synthesis

Purpose: The purpose of the current research was to review the lived experiences of patients with multiple sclerosis (MS) in order to extrapolate the psychological process of adaptation. Methods: A thematic synthesis was undertaken within 3 phases: systematic search for literature, critical appraisal of included studies and synthesis of research. Results: A total of 47 studies were included in this review, this included 1146 (812 females, 265 males, and 69 unknown) unique patients with MS (aggregated mean age: 49.3 years [30/47 studies], aggregated time with illness: 12.3 years [28/47 studies]). The critical appraisal of research illustrated that the design of the studies and the reference to reflexivity in studies were not well considered. The synthesis was able to identify a primary response of psychological adaptation as well as distinct coping strategies. A model of emotion, hope, and adjustment was identified. Conclusion: Simple processes of adaptation for people with MS can be considered by clinicians and utilised to promote mental well-being in patients. Clinicians and researchers also need to be aware of the important psychological needs of patients during interactions. Discussion and clinical implications are provided

Understanding the importance of illness narratives in people with multiple sclerosis who participated in an exercise rehabilitation trial; a qualitative study

Objectives: To understand how illness narrative master plots may be expressed and associated together and to determine how stories are used to demonstrate the psychological benefits of exercise rehabilitation. Design: A subtle realist paradigmatic position was assumed which utilised a hermeneutic henomenological methodology. Setting: Two community centres within the UK. Participants: A purposive sample of 10 individuals with MS (7 female, 3 male) were included. Individuals were eligible if: (a) they had undertaken at least 8 weeks of an exercise rehabilitation trial, (b) if they were older than 19 years, and (c) could understand English. Intervention: Participants had undertaken at least 8 weeks from a 12-week cycle ergometer randomised control rehabilitation trial. The trial varied the exercise intensity experienced by participants. Main Outcome Measure: A single semi-structured interview with six sub-sections that included elements related to emotional regulation. A categorical content narrative analysis was undertaken. The analysis was supplemented by integrating findings from past research studies. Results: Two themes were identified: (1) Identification of a model of narrative expression. This model establishes how narrative master plots may be associated with each other and broadly represent coping or succumbing responses to the experiences of MS. The transition in expression of master plots is detailed and associated with psychological adaptation to illness (2) The role of physical activity in contributing to psychological benefits of exercise rehabilitation identified through narrative expression. This research highlighted a dominant process of narrative master plot expression from detective, to didactic and then heroic master plot. Conclusion: The research has developed a new model for understanding the cycles related to dominant master narrative plots. Further work is needed to establish these results and future studies are needed to establish if there is feasible way to use illness narrative within clinical environments

Understanding the importance of illness narratives in people with Multiple Sclerosis who participated in an exercise rehabilitation trial; a qualitative study

Objectives: To understand how illness narrative master plots may be expressed and associated together and to determine how stories are used to demonstrate the psychological benefits of exercise rehabilitation. Design: A subtle realist paradigmatic position was assumed which utilised a hermeneutic henomenological methodology. Setting: Two community centres within the UK. Participants: A purposive sample of 10 individuals with MS (7 female, 3 male) were included. Individuals were eligible if: (a) they had undertaken at least 8 weeks of an exercise rehabilitation trial, (b) if they were older than 19 years, and (c) could understand English. Intervention: Participants had undertaken at least 8 weeks from a 12-week cycle ergometer randomised control rehabilitation trial. The trial varied the exercise intensity experienced by participants. Main Outcome Measure: A single semi-structured interview with six sub-sections that included elements related to emotional regulation. A categorical content narrative analysis was undertaken. The analysis was supplemented by integrating findings from past research studies. Results: Two themes were identified: (1) Identification of a model of narrative expression. This model establishes how narrative master plots may be associated with each other and broadly represent coping or succumbing responses to the experiences of MS. The transition in expression of master plots is detailed and associated with psychological adaptation to illness (2) The role of physical activity in contributing to psychological benefits of exercise rehabilitation identified through narrative expression. This research highlighted a dominant process of narrative master plot expression from detective, to didactic and then heroic master plot. Conclusion: The research has developed a new model for understanding the cycles related to dominant master narrative plots. Further work is needed to establish these results and future studies are needed to establish if there is feasible way to use illness narrative within clinical environments

Experiences of fatigue in daily life of people with acquired brain injury: A qualitative study

Purpose. To develop an in-depth understanding of how survivors of acquired brain injury (ABI) experience fatigue and how fatigue affects everyday life. Materials and methods. We conducted semi-structured in-depth interviews with 16 adults with ABI fatigue, recruited from support groups in south east UK. Interviews were analysed using the frameworks method. Results. We developed four themes: experiencing fatigue in the context of everyday activities, struggling to make sense of fatigue, coping with fatigue, adjusting social participation in the context of fatigue. Fatigue was comprised of mental, physical, generalised and motivational fatigue. Balancing fatigue against participation in daily activities was influenced by coping strategies and social support. Opportunities to socialize or participate in meaningful activities provided incentives for participants to push through their fatigue. Conclusions. This study highlights complex interactions that potentially mitigate the impact of fatigue on everyday life. Educational and self-management approaches to fatigue need to account for different types of fatigue in the contexts of an individual’s daily activity. Assessment of fatigue should capture in- the- moment experiences of different types of fatigue and activity. Social support and participation in meaningful activities may help individuals to break the negative cycle of fatigue and inactivity

A cross-sectional pilot study assessing dietary intake in people with multiple sclerosis and the relationships with national diet guidelines

People with the Multiple Sclerosis (PwMS) modify their diet, however their knowledge of diet is unknown and dietary modifications may have long term health implications. We set out to assess the feasibility of a study to determine diet patterns compared to national nutritional guidelines in PwMS, and in those with and without fatigue. Methods: In this cross sectional study four MS support groups were attended throughout the Thames Valley area, with approximately 20 to 25 people attending each group at any one point in time. Measures of feasibility were sought. Descriptive statistics were used to determine inconsistencies in nutrient intake in PwMS with and without fatigue compared to the Scientific Advisory Committee on Nutrition guidelines. Results: 31 PwMS provided dietary data using a Food Frequency Questionnaire, alongside the Fatigue Severity Scale, Barthel Index activities of daily living and demographic data. One third of participants were on a modified diet. Compared to the UK nutrition guidelines, several nutrients were ±1 standard deviation in PwMS, and PwMS tended to miss targets for diet guidelines. Those who were fatigued showed further differences in nutrient intake compared to those who were non-fatigued, and women tended to have healthier diets than men. Missing data was low and response rate was high Conclusion: For the first time data is provided that shows PwMS may have altered dietary intake compared to national guidelines. Furthermore, those who were fatigued show further differences compared to non-fatigued PwMS. Considering the high incidence of modified diets in this group, more substantial investigation of diet is required

Factors associated with participation in life situations for adults with stroke: a systematic review

Objectives: To identify biopsychosocial factors associated with participation outcomes for adults with stroke and to investigate factors associated with participation at different time points post stroke. Data sources: Medline, CINAHL, AMED, PyschINFO and Web of Science were systematically searched using key words “stroke”, “participation” and “outcomes” and their synonyms on 15th May 2017. Study selection: Observational studies reporting on biopsychosocial factors and participation outcomes for community dwelling adults with stroke were selected. Studies were eligible for inclusion if participation outcomes were measured using indices that mapped to the participation domain of the ICF. Intervention studies were excluded. A second reviewer checked all studies against eligibility criteria at each stage. Data extraction: Data were extracted on any statistically determined association between biopsychosocial factors and participation outcomes. Data synthesis: The proportion of studies reporting significant associations with variables were classified according to the ICF. The exact binomial test was used to determine the probability that the proportion of studies reporting significant associations was due to chance alone. Qualitative descriptive summaries of each study allowed consideration of interactions between variables and changes in participation over time points. Conclusions: Whilst depressive symptoms, cognitive functioning and mobility were found to have the strongest associations with participation, we found that other frequently occurring factors (such as fatigue and environmental factors) were less extensively considered. The diversity of outcome measures encountered within the review highlight the need for a consensus on a core set of outcome measures to evaluate long term participation in life situations after stroke