Therapists’ experiences and perceptions of teamwork in neurological rehabilitation: Critical happenings in effective and ineffective teamwork

This article reports the second part of an exploratory study into occupational therapists` and physiotherapists` perceptions and experiences of team-work in neurological rehabilitation: the factors that were thought to influence effective and ineffective team-work, and the meaning behind effective and ineffective team work in neurological rehabilitation. The study was undertaken through semi-structured interviews of 10 therapists from three different neurological rehabilitation teams based in the United Kingdom, and used the critical incident technique. Through analysis of the data, several main themes emerged regarding the perceived critical happenings in effective and ineffective team work. These were: team events and characteristics, team members` characteristics, shared and collaborative working practices, communication, specific organisational structures, environmental, external, and patient and family related factors. Effective and ineffective team-work was perceived to impact on a number of levels: having implications for the team, the patient, individual team members, and the neurological rehabilitation service. The study supported the perceived value of team work within neurological rehabilitation. It also indicated the extensive and variable factors that may influence the team working process as well as the complex and diverse nature of the process

Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progressive MS

Despite significant progress in the development of therapies for relapsing MS, progressive MS remains comparatively disappointing. Our objective, in this paper, is to review the current challenges in developing therapies for progressive MS and identify key priority areas for research. A collaborative was convened by volunteer and staff leaders from several MS societies with the mission to expedite the development of effective disease-modifying and symptom management therapies for progressive forms of multiple sclerosis. Through a series of scientific and strategic planning meetings, the collaborative identified and developed new perspectives on five key priority areas for research: experimental models, identification and validation of targets and repurposing opportunities, proof-of-concept clinical trial strategies, clinical outcome measures, and symptom management and rehabilitation. Our conclusions, tackling the impediments in developing therapies for progressive MS will require an integrated, multi-disciplinary approach to enable effective translation of research into therapies for progressive MS. Engagement of the MS research community through an international effort is needed to address and fund these research priorities with the ultimate goal of expediting the development of disease-modifying and symptom-relief treatments for progressive MS

Training Neurodegenerative Disease Support Group Leaders: A New Support Group Functioning Scale

Support group leaders play pivotal roles in maintaining healthy community support groups; however, these leaders also have personal support needs and typically lack formal training in managing complex behaviors of neurodegenerative disorders. A support group well-being questionnaire, assessing support group functioning, was developed and piloted among participants of an educational training program designed for support group leaders of various neurodegenerative disorder-specific support groups. An exploratory factor analysis evaluated the questionnaire’s psychometric properties and identified a reliable single factor five-item solution, which was titled the Support Group Functioning Scale (SGFS). Preliminary interpretation guidelines were proposed. Development of this scale is a first step in identifying support group leaders’ needs as they provide frontline assistance to caregivers and individuals with neurodegenerative illnesses. This tool shows promise as an efficient way to identify support groups in need of assistance and to assess the impact of trainings on support group functioning. Further validation of the scale is needed

Study protocol on advance care planning in multiple sclerosis (ConCure-SM): intervention construction and multicentre feasibility trial

Multiple sclerosis (MS) is the most common cause of progressive neurological disability in young adults. The use of advance care planning (ACP) for people with progressive MS (pwPMS) remains limited. The ConCure-SM project aims to assess the effectiveness of a structured ACP intervention for pwPMS. The intervention consists of a training programme on ACP for healthcare professionals caring for pwPMS, and a booklet to be used during the ACP conversation. Herein, we describe the first two project phases

Communication between therapists and nurses working in inpatient interprofessional teams: Systematic review and meta-ethnography

Purpose: The aim of the synthesis was to develop new understanding about the influences on communication in interprofessional teams from therapist and nurse perspectives. Methods: Six electronic databases were searched, combined with citation tracking and hand searching, yielding 3994 papers. Three researchers were involved in screening and quality appraisal, resulting in 18 papers for synthesis, using the process of meta-ethnography. Concepts were identified, compared and translated under five category headings. Two researchers mapped interpretative summaries and a line of argument was created. Results: The line of argument is that four inter-related contingences underpin effective communication between therapists and nurses. Effective communication depends on there being a genuine need to give and receive information for patient care, the capacity to attend to, hold, and use information, and opportunities to share space to enable communication to occur. The fourth contingency is good quality relationships and this is the glue that holds the contingencies together. Conclusion: This synthesis has provided an opportunity to illuminate how therapists and nurses accomplish interprofessional work through communication. The contingencies of need, capacity, opportunity and quality of relationships create a new structure for understanding what underpins communication between these two groups .Peer reviewedFinal Accepted Versio

Professional and lay facilitators\u27 perceptions of roles, goals, and strategies to promote social support and self-management in face-to-face support groups for adults with multiple sclerosis and myotonic muscular dystrophy

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Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research

Introduction: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson’s disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. Methods: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson’s Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. Results: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. Conclusions: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers

Strategies used in the pursuit of achievability during goal setting in rehabilitation

We used conversation analysis of six audio- and video-recorded goal setting meetings that were attended by patients and their respective treating team to explore and describe the interaction of participants during interdisciplinary goal setting, and to identify the strategies used to agree goals. The health care professionals involved in the six sessions included four physiotherapists, four occupational therapists, four nurses, one speech and language therapist, and one neuropsychologist. The participants included 3 patients with multiple sclerosis, 2 patients with spinal cord lesions, and 1 patient with stroke from an inpatient neurological rehabilitation unit. Detailed analysis revealed how the treating team shaped the meetings. The most notable finding was that there was rarely a straightforward translation of patient wishes into agreed-on written goals, with the treating team leading goal modification so that goals were achievable. Despite professional dominance, patients also influenced the course of the interaction, particularly when offering resistance to goals proposed by the treating team

Enhancing involvement of people with multiple sclerosis in clinical trial design

Background: Although often overlooked, patient and public involvement (PPI) is vital when considering the design and delivery of complex and adaptive clinical trial designs for chronic health conditions such as multiple sclerosis (MS). Methods: We conducted a rapid review to assess current status of PPI in the design and conduct of clinical trials in MS over the last 5 years. We provide a case study describing PPI in the development of a platform clinical trial in progressive MS. Results: We identified only eight unique clinical trials that described PPI as part of articles or protocols; nearly, all were linked with funders who encourage or mandate PPI in health research. The OCTOPUS trial was co-designed with people affected by MS. They were central to every aspect from forming part of a governance group shaping the direction and strategy, to the working groups for treatment selection, trial design and delivery. They led the PPI strategy which enabled a more accessible, acceptable and inclusive design. Conclusion: Active, meaningful PPI in clinical trial design increases the quality and relevance of studies and the likelihood of impact for the patient community. We offer recommendations for enhancing PPI in future MS clinical trials