Poster boys and the rehabilitative dream: using a temporal lens to explore severe brain injury rehabilitation

Context: The future comes into the present and acts upon the now. Understanding how engagement with the future shapes today and how actions taken in the now affect a time yet to come is important in understanding and improving brain injury rehabilitative practice. Objective: This paper examines the way in which futures of different types of brain-injured residents residing in long-term neurological care settings are imagined by health and care professionals and the role a ‘rehabilitative imaginary’ has in how residents’ futures are imagined or go unimagined. Methods: Over 500 hours of ethnographic observations and 49 interviews with staff members in two neurological rehabilitation and long-term settings in England were analysed using situational analysis, drawing out key rehabilitative narratives presented here. Findings: Residents were primarily categorised by their abilities to rehabilitate successfully (or not) and their futures imagined (or not) in line with their rehabilitative journey. Key residents who successfully rehabilitated and fulfilled a rehabilitative ideal were held up as ‘poster boys’ (or girls), providing a positive advertisement for the organisation, engendered dedication to the specialism of neurological rehabilitation and reinforced rehabilitation-as-process. Limitations: Data was collected in two English care settings. Applicability to international care settings is unknown. Extraneous factors restricting health care professionals’ future imaginings were not explicitly studied. Implications: The paper concludes by considering the implications of rehabilitative imaginary-fuelled narratives in these settings. It argues that predominant rehabilitative narratives bracket out how and if the futures of those unable to rehabilitate successfully are imagined by health care professionals and questions whether non-imagining leads to inaction around those not rehabilitating. Potential organisational and structural reasons for constrained health care professionals’ imaginings is discussed, and broader applicability of the reification of particular patient types in other areas of health care is considered

Caring relations at the margins of neurological care home life: the role of 'hotel service' staff in brain injury rehabilitation

Context: Domestic staff in hospitals and aged long-term care have been shown to perform a range of caring roles alongside their cleaning work. Objective: This paper explores the roles these people and other ‘hotel service staff’ (catering, domestic, maintenance, finance and administrative) play in the rehabilitation of people with brain injuries residing in long-term care settings. Methods: This research draws on in-depth ethnographic data collected in 2014–15 over five months at two neurological long-term care settings in the UK; including interviews and observations of day-to-day happenings in the lives of around 60 brain injured residents and the work of 16 hotel service staff. The data was subject to a situational analysis – underpinned by grounded theory and discourse analysis. Findings: Hotel service staff contribute to and compliment the rehabilitation of patients’ cognitive skills, communication and physical functioning, and provide opportunities for occupation and interaction. The therapeutic accomplishments achieved by involving patients in mundane tasks of everyday life (e.g., gardening, managing money, sharing food), fit with the aims of more ‘formalized’ rehabilitation – to restore patients’ abilities to carry out ‘activities of daily living’. Limitations: This study has been unable to fully explicate how hotel service staff have, or gain, the skills to interact so positively with brain injured residents. The study was confined to two sites and may not be reflective of practice elsewhere. Implications: The study findings highlight how the work and interactions of hotel service staff contribute not only to care but to the rehabilitation of people with severe brain injuries. This has implications for service design as well as health and social care education

Caring for people with severe brain injuries: improving health care professional communication and practice through online learning

Introduction: Severe brain injuries can leave people in prolonged disorder of consciousness resulting in multifaceted medical, nursing, and rehabilitative needs that can be challenging for even the most experienced multidisciplinary team. The complexities of care, communication with families, and best interest decision-making about medical interventions means there is a need for ongoing training in clinical, social, ethical, and legal aspects. Methods: Using a combination of group discussions, interviews, and questionnaires with learners, this article reports an evaluation of designing and delivering an interprofessional, online work-based course to health care professionals caring for prolonged disorder of consciousness patients. Results: There were challenges for staff uptake because of COVID-19, but engaging with it increased knowledge in defining and diagnosing patients' conditions, understanding multidisciplinary team roles, communicating with families, and navigating legal and ethical issues. Course participation also enhanced critical and reflective thinking skills, provided a sense of connection to other professionals, and generated plans to improve service provision. Discussion: Online learning that enables health care professionals to engage at their own pace and also come together as an interprofessional community can provide invaluable continuing professional development and help to enhance joined up, holistic patient care. However, achieving this requires significant investment in creating research-led, multimedia, learning materials, and courses that include synchronous and asynchronous delivery to combine flexible study with the opportunity for peer networks to form. It also depends on a commitment from organizations to support staff online continuing professional development. In response to the COVID-19 pandemic, most forms of continuing professional development (CPD) for health care professionals (HCPs) had to move rapidly online. Since then, National Health Service (NHS) and health education strategies1 have prompted further strategic thinking about how to move beyond emergency online delivery to a more sustainable and positive engagement with the potential of online CPD. This article evaluates a multimedia online course designed to develop HCPs' skills in caring for patients with prolonged disorders of consciousness (PDoC). Prolonged disorders of consciousness is an umbrella term for three conditions—coma, vegetative, and minimally conscious states. These conditions, caused by severe brain injury, are associated with profound motor, cognitive, sensory, and functional deficits that require full and continuous care.2 The complexity of such patients' needs is complicated further by social, ethical, and legal contexts. Our own research has highlighted urgent training requirements for HCPs including clarification around diagnosis, improving communication with families, and enhancing decision-making about life-sustaining interventions.3–7 In a bid to address these learning needs, we (members of the Coma and Disorders of Consciousness Research Centre) had already delivered in-person talks and training days to over 5000 practicing HCPs since our formation as a research center in 2010 (see list at: www.cdoc.org.uk). In 2018, we started to develop an online learning course designed to be delivered over a ten-week period for interprofessional CPD in workplace settings, combining online interactive self-study modules with “real-time” virtual seminars and tweet chats. The course consists of three learning sets, each involving two or three modules (Table 1); each set involves between four and 8 hours of independent study, depending on the learner's knowledge base and the depth to which they wish to explore each area

Lifestyle, exercise and activity package for people living with progressive Multiple Sclerosis (LEAP-MS): adaptions during the COVID-19 pandemic and remote delivery for improved efficiency

The LEAP-MS (Lifestyle, Exercise and Activity Package for People living with Progressive Multiple Sclerosis) study has developed an individualised supported self-management approach for physical activity for people with progressive multiple sclerosis (MS) and severe disability. The intervention has been evaluated in a single-arm feasibility study with embedded process evaluation. The feasibility study was due to open to recruitment during the COVID-19 2020–2021 pandemic, 1 month into the first UK-wide lockdown. We worked rapidly to implement adaptions to the trial procedures and intervention delivery that we believe are applicable to randomised controlled trials. Recruitment became predominantly via self-referral. Electronic consent was employed, with consent discussions occurring over the telephone. Registration, consent, eligibility assessment and data collection as well as the intervention (online physical activity tool) were via a secure, encrypted multi-user web-based platform for participants, physiotherapists and researchers accessible via various hardware. Physiotherapy consultations, as well as the process evaluation, were conducted remotely using video conferencing software or the telephone. A remote training package for physiotherapists and site initiations was also developed and electronic site files employed. Our adaptions are extremely topical given the COVID-19 situation, and whilst not what we had originally planned, have enabled successful delivery of the feasibility study and are relevant to conducting randomised controlled trials and meeting the needs of people with MS who are far more isolated than ever before

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

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