Developing a multimedia learning resource for allied health professionals: exploring the challenges of prolonged disorders of consciousness

Relevance: Recognising the increasing number of people being sustained with prolonged disorders of consciousness (PDoC), this study introduces new research with allied health professionals (AHPs) that is being used to create a range of digital resources to support AHP undergraduate education and practitioner CPD. Purpose: Previous research (Latchem et al., 2015) identified a mismatch between understandings that families of people with a PDoC hold of AHP interventions and the aims and understandings of AHPs delivering those interventions. This study explores a) how AHPs understand and navigate practical, ethical and legal issues surrounding the care of these patients, b) the learning needs of both qualified and pre-registration AHPs and c) uses the data to create e-learning resources for AHPs and their students. Methods/analysis: This qualitative study uses video-taped interviews with 15 physiotherapists, occupational therapists and speech and language therapists purposively sampled from NHS and independent care providers, and workshops conducted with mixed AHP pre-registration students. The interviews/workshops were transcribed and analysed thematically, adopting a grounded-theory approach to examine experience and learning needs surrounding PDoC care. Emergent themes informed the focus and structure of the e-learning resource. Results: AHPs described how the needs of PDoC patients shifted the focus of, and extended their clinical skills. They reported struggling adjusting to, and finding satisfaction in, their work with this client group who don’t ‘improve’, have a clear rehabilitative nor declining trajectory. Satisfaction however was derived through close multidisciplinary team working. The intertwining of their therapeutic work occurred to such an extent that AHPs resisted defining a distinct disciplinary role and instead discussed their work as entirely interdisciplinary. AHPs repeatedly identified the dilemmas faced by families and discussed the tensions in their own thinking as their clinical objectivity clashed with their own sense of and feelings about the patients’ level of consciousness. They highlighted concerns about the ethics of medical ‘advancements’ and life-sustaining treatments and expressed uneasiness and uncertainty regarding their role in treatment withdrawal situations. Pilot workshops are being developed around these key issues and e-learning resources to support needs for training will be ready for dissemination at conference. Discussion and conclusions: Both families and AHPs can question patients’ level of awareness and the rationale of treatments. However, when families expect ongoing therapeutic input for their relative, or conversely see them as ‘irretrievably gone’, this sits in tension with AHP's clinical reasoning or at times, their relentless striving to capture signs of awareness and for ‘rehabilitation’. Ethical, legal, social and clinical dilemmas collide in the care of PDOC patients, challenging much contemporary clinical practice and pre-registration education. This study and the developing multimedia learning resource demonstrate the interplay between these elements and the scope for CPD support. Impact and implications: The research is developing a new multi-media resource to improve understandings of caring for PDoC patients/their families and related ethical/social/clinical issues. The resource builds on Kitzinger and Kitzinger's successful healthtalk.org module for families and has buy-in from the core AHP Professional Bodies. Our aim is that this AHP-facing resource will have high accessibility, MDT value and impact on personal, practice and curricula development

Effects of Acute Bouts of Aerobic Exercise on Adipokines in Individuals with Mid-Spectrum Chronic Kidney Disease

Adipokines have been known to influence various health-related complications such as chronic kidney disease (CKD) and cardiovascular diseases. Fluctuations in adipokines are commonly seen from changes in body composition, however, some evidence shows acute changes may be seen from exercise. Individuals with CKD are commonly characterized by a decline in renal filtration and systemic inflammation. It may be possible that an acute bout of aerobic exercise may improve pro- and anti-inflammatory adipokine concentrations typically seen in individuals with moderate stages of CKD. PURPOSE: To determine the acute effects of aerobic exercise on adipokine concentrations in individuals with moderate stages of CKD. METHODS: Fourteen participants (8 females and 6 males, age = 58.7 ± 9.3 yrs., and %BF = 36.0 ± 9.6) were classified as having moderate stages of CKD (stages G3 and G4). Participants completed 30 min of steady-state moderate intensity exercise (SSE) at 65% VO2 reserve and high-intensity interval training (HIIE) at a 90% VO2 reserve separated by 2 min of slow walking (20% VO2 reserve) in a randomized, crossover design fashion. Venous blood samples were obtained at baseline, 1 h, and 24 h post-exercise. Data were analyzed using a repeated measures ANOVA (p \u3c 0.05) and a paired t-test. If any significant main or interaction effects were found, a post-hoc test was performed. RESULTS: There were no significant differences in adiponectin and leptin levels within treatments. However, significant differences were seen between baseline and 24 h omentin concentrations when performing HIIE (F(2,26) = 5.001, p = .015). Omentin rose significantly 24 h after an acute bout of HIIE (214.69 ± 83.28 to 252.04 ± 91.22, p = .034). A paired t-test showed no significant differences between SSE and HIIE for adiponectin and leptin. Although, there was a significant difference between 24 h omentin concentrations for SSE and HIIE (t = -2.327, p \u3c .037). Omentin concentrations were significantly higher when performing HIIE (252.04 ± 91.22) as opposed to SSE (218.70 ± 82.00, p \u3c .001). CONCLUSION: Omentin plays an anti-inflammatory role in chronic diseases. Thus, individuals experiencing systemic inflammation from moderate stages of CKD may see benefits after performing an acute bout of HIIE due to the up-regulated release of omentin 24 h post-exercise

The psychological impact of prolonged disorders of consciousness on caregivers:a systematic review of quantitative studies

Objective: Systematic review of the nature, frequency and severity of psychological experiences of people who have a close relationship with a person with a prolonged disorder of consciousness. Data sources: Cochrane Library, Web of Science, PsycINFO, PubMed, Embase®, MEDLINE®, Allied and Complementary Medicine™, were searched from inceptions until December 2016 with additional hand searching of reference lists of included articles. Review methods: Studies were included that used quantitative methodologies and psychological measures to investigate experiences. The PRISMA statement was followed with inclusion criteria set a priori. A data synthesis summarized psychological constructs studied. Results: A total of 18 studies (ranging between n = 16–487 participants) met the inclusion criteria with 15 of 18 studies focused on the primary caregiver. A total of 23 standardized psychological measures were identified to assess four primary psychological constructs: Loss and grief, psychological wellbeing changes, burden and use of coping strategies. Conclusions: Small sample sizes, limited variables and reliance on observational methods affected quality. Caregivers do find ways to manage independently, but some exhibit clinically significant psychological distress that does not change over time alone and may get worse

Web-based physical activity intervention for people with progressive multiple sclerosis: application of consensus-based intervention development guidance.

OBJECTIVES: People with progressive multiple sclerosis (PwPMS) report that they recognise the benefits of activity on their physical and psychological health but need support to achieve their physical activity goals. We aimed to systematically develop a theoretically informed intervention that would enable PwPMS to more readily engage in regular physical activity. DESIGN: We used an intervention mapping approach to inform intervention development. SETTING: We conducted semistructured interviews with PwPMS and their families/carers and physiotherapists recruited from secondary care settings. PARTICIPANTS: Fourteen PwPMS with an Expanded Disability Status Scale score of between 6 and 8 and 7 of their families/carers and 13 physiotherapists and 1 physiotherapy technician participated. RESULTS: Interview data suggested that the development of supportive coaching relationships with physiotherapists could promote the ability of PwPMS to achieve a desirable and achievable physical activity plan. These interview data informed the prototype 'Lifestyle Exercise and Activity Package for Multiple Sclerosis' (LEAP-MS) consisting of a secure multiuser web-based platform (with an education and activity suite, interactive components enabling selection of exercises, goal setting and activity logging), up to six flexible face-to-face or web-based physiotherapy coaching sessions and remote support via an embedded web-based messaging function that all together draw on specific theory-based methods to achieve physical activity behaviour change, namely active learning, reinforcement, modelling, feedback, facilitation, goal setting and guided practice. Implementation is within a multiuser platform accessible to participants, trained physiotherapists and researchers. CONCLUSIONS: We have followed an inclusive, systematic and transparent process to develop the LEAP-MS intervention that enables detailed description of components, context and guiding principles to inform ongoing evaluation. Importantly, PwPMS expressed the need for autonomy in developing physical activity plans. This has been achieved through the embedding of self-management principles in the design and delivery of the LEAP-MS intervention

Web-based physical activity intervention for people with progressive multiple sclerosis: application of consensus-based intervention development guidance.

OBJECTIVES: People with progressive multiple sclerosis (PwPMS) report that they recognise the benefits of activity on their physical and psychological health but need support to achieve their physical activity goals. We aimed to systematically develop a theoretically informed intervention that would enable PwPMS to more readily engage in regular physical activity. DESIGN: We used an intervention mapping approach to inform intervention development. SETTING: We conducted semistructured interviews with PwPMS and their families/carers and physiotherapists recruited from secondary care settings. PARTICIPANTS: Fourteen PwPMS with an Expanded Disability Status Scale score of between 6 and 8 and 7 of their families/carers and 13 physiotherapists and 1 physiotherapy technician participated. RESULTS: Interview data suggested that the development of supportive coaching relationships with physiotherapists could promote the ability of PwPMS to achieve a desirable and achievable physical activity plan. These interview data informed the prototype 'Lifestyle Exercise and Activity Package for Multiple Sclerosis' (LEAP-MS) consisting of a secure multiuser web-based platform (with an education and activity suite, interactive components enabling selection of exercises, goal setting and activity logging), up to six flexible face-to-face or web-based physiotherapy coaching sessions and remote support via an embedded web-based messaging function that all together draw on specific theory-based methods to achieve physical activity behaviour change, namely active learning, reinforcement, modelling, feedback, facilitation, goal setting and guided practice. Implementation is within a multiuser platform accessible to participants, trained physiotherapists and researchers. CONCLUSIONS: We have followed an inclusive, systematic and transparent process to develop the LEAP-MS intervention that enables detailed description of components, context and guiding principles to inform ongoing evaluation. Importantly, PwPMS expressed the need for autonomy in developing physical activity plans. This has been achieved through the embedding of self-management principles in the design and delivery of the LEAP-MS intervention

Lifestyle, exercise and activity package for people living with progressive multiple sclerosis (LEAP-MS): protocol for a single-arm feasibility study.

BACKGROUND: We have co-designed a tailored blended physiotherapy intervention for people with progressive multiple sclerosis (PwPMS) who often struggle to access support for physical activity. Underpinned by self-management principles, the Lifestyle, Exercise and Activity Package for people with Multiple Sclerosis (LEAP-MS) intervention incorporates face-to-face or online physiotherapy coaching sessions with an accompanying online physical activity platform. The LEAP-MS platform is a multi-user system enabling user and physiotherapist to co-create activity plans. The LEAP-MS platform consists of an information and activity suite, interactive components enabling selection of exercises into an activity programme, goal setting and activity logging. The platform also facilitates online remote support from a physiotherapist through an embedded online messaging function. We aim to evaluate the LEAP-MS platform in a feasibility trial. METHODS: LEAP-MS will be evaluated within a single-arm feasibility study with embedded process evaluation. After registration and initial eligible screening, 21 participants will be required to complete baseline self-completion measures. This will be followed by an initial home-based or online coaching session with a physiotherapist (who has received tailored self-management and digital resource training) and access to the online intervention for an initial 3-month period. During this period, participants are given the option to request up to five further home-based or online physiotherapy coaching sessions. Follow-up questionnaires and semi-structured interviews will be administered 3 months after baseline with participants and intervention physiotherapists. The LEAP-MS platform will be available to participants for a further 3 months. Usage of the LEAP-MS platform will be tracked during the full 6-month period and final follow-up will be conducted 6 months after baseline. DISCUSSION: Feasibility outcomes (recruitment, retention, intervention uptake and safety) will be reported. The process evaluation will be undertaken to identify possible mechanisms for any observed effects. The data will inform full-scale evaluations of this co-produced, blended physiotherapy intervention. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03951181 . Registered 15 May 2019

A web-based life-style, exercise and activity intervention for people with progressive multiple sclerosis: Results of a single-arm feasibility study.

BACKGROUND: People with progressive Multiple Sclerosis often struggle to access appropriate and inclusive support for regular physical activity. The Lifestyle, Exercise and Activity Package (LEAP-MS) intervention, is a co-designed web-based physical activity intervention for people with progressive Multiple Sclerosis (MS). It consists of two key components; (1) web-based physical activity coaching with physiotherapists using self-management support strategies and 2) an interactive web-based platform including a physical activity information suite, an activity selection and planning tool and a participant-physiotherapist messaging system. We aimed to evaluate recruitment, retention and uptake, in a single arm feasibility study. METHODS: Participants with primary or secondary progressive MS with an Expanded Disability Status Scale score of 6 to 8 were recruited. Assessments included the MS Impact Scale (MSIS-29) and measures of participation at baseline, three and six months. All participants received the intervention which consisted of up to six web-based physiotherapy- led physical activity coaching sessions alongside access to web-based education and activity suites. Recruitment, retention and uptake data were summarised. Pre-defined progression criteria were used to guide feasibility assessment. Clinical outcome data were analysed descriptively. RESULTS: Fifty-eight percent (21/36) of those submitting expressions of interest were recruited; 76% completed follow-up. Pre-specified progression criteria for retention were met but recruitment did not meet progression criteria. The intervention achieved set fidelity criteria. At three months, 12 participants (75%) reported improvements in routine activities after the intervention. MSIS-29 physical scores improved by an average of eight points (95% CI -12.6 to -3.3). Improvements were also seen in MSIS-29 psychological scores and fatigue. Some improvements were maintained at six months. CONCLUSIONS: The LEAP-MS intervention is feasible and associated with improvements in MSIS-29 scores. The intervention facilitated partnership working between physiotherapists and people with progressive MS. Users developed valuable skills in supported self-management by focussing on enhancing physical activity to support overall wellbeing. This work has laid the foundations for a large-scale evaluation of a co-designed intervention with potential for far reaching impact on the lives of people with progressive MS

Integrating qualitative research within a clinical trials unit: developing strategies and understanding their implementation in contexts

Background/aims: The value of using qualitative methods within clinical trials is widely recognised. How qualitative research is integrated within trials units to achieve this is less clear. This paper describes the process through which qualitative research has been integrated within Cardiff University’s Centre for Trials Research (CTR) in Wales, UK. We highlight facilitators of, and challenges to, integration. Methods: We held group discussions on the work of the Qualitative Research Group (QRG) within CTR. The content of these discussions, materials for a presentation in CTR, and documents relating to the development of the QRG were interpreted at a workshop attended by group members. Normalisation Process Theory (NPT) was used to structure analysis. A writing group prepared a document for input from members of CTR, forming the basis of this paper. Results: Actions to integrate qualitative research comprised: its inclusion in Centre strategies; formation of a QRG with dedicated funding/roles; embedding of qualitative research within operating systems; capacity building/training; monitoring opportunities to include qualitative methods in studies; maximising the quality of qualitative research and developing methodological innovation. Facilitators of these actions included: the influence of the broader methodological landscape within trial/study design and its promotion of the value of qualitative research; and close physical proximity of CTR qualitative staff/students allowing sharing of methodological approaches. Introduction of innovative qualitative methods generated interest among other staff groups. Challenges included: pressure to under-resource qualitative components of research, preference for a statistical stance historically in some research areas and funding structures, and difficulties faced by qualitative researchers carving out individual academic profiles when working across trials/studies. Conclusions: Given that CTUs are pivotal to the design and conduct of RCTs and related study types across multiple disciplines, integrating qualitative research into trials units is crucial if its contribution is to be fully realised. We have made explicit one trials unit’s experience of embedding qualitative research and present this to open dialogue on ways to operationalise and optimise qualitative research in trials. NPT provides a valuable framework with which to theorise these processes, including the importance of sense-making and legitimisation when introducing new practices within organisations