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Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time. Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS. The findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time. This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes. New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early intervention The paper's organising concepts support a clearer understanding for early intervention practitioners of this complex parent experience Early intervention practitioners are encouraged to reflect upon their practice as they engage in families' lives and partner with parents during this challenging period to optimise outcomes [ABSTRACT FROM AUTHOR]

To evaluate the usability and acceptability of the Mental Capacity Assessment Support Toolkit (MCAST) in healthcare settings and whether its use was associated with increased legal compliance and assessor confidence. A mixed methods convergence triangulation model was used. Multidisciplinary professionals used the MCAST during mental capacity assessments for UK hospital patients with diagnoses of stroke or acute or chronic cognitive impairment. Changes in legal compliance were investigated by comparing scores on case note audits before and after implementation of the MCAST. Changes in assessor confidence and professionals' perceptions of the MCAST's usability and acceptability were explored using surveys. Patients' and family members' views on acceptability were determined using semi-structured interviews. Data were integrated using triangulation. Twenty-one professionals, 17 patients and two family members participated. Use of the MCAST was associated with significant increases in legal compliance and assessor confidence. Most professionals found the MCAST easy to use and beneficial to their practice and patients. Patients and family members found the MCAST materials acceptable. The MCAST is the first toolkit to support the needs of individuals with communication disabilities during mental capacity assessments. It enables assessors to deliver high quality, legally compliant and confident practice. Mental capacity assessment practice needs to be improved to maximise patient autonomy, safety and well-being. The MCAST is a paper-based toolkit designed to facilitate and improve mental capacity practice in England and Wales. This study suggests the MCAST would be easy and acceptable to use in healthcare settings and could lead to improvements in assessment quality and assessor confidence. [ABSTRACT FROM AUTHOR]

Background:The European Disability Strategy (2010–2020) seeks to significantly raise the proportion of people with disabilities working in the open labour market. The ERGO WORK project is a collaboration of academic and industrial partners in six European countries, focused on understanding and tackling barriers to workplace inclusion for workers with disabilities. Methods:This study sought to explore the perceptions and needs of stakeholders in terms of workplace adaptation to the needs of employees with disabilities. An exploratory online survey was completed by 480 participants across six countries. Results:The analysis suggests that workplaces could be further improved to meet the needs of employees with considerable scope for training within companies to raise awareness about employees’ needs, employers’ obligations and workplace adaptation. Conclusions:This snapshot suggests there is still a gap between intent and reality in workplace inclusion and further strategies are needed to improve the opportunities for employees with disabilities. The paper argues that ergonomics may have a key role to play in tackling these challenges and adapting the workplace environment and job design to suit the needs of individual employees.Implications for rehabilitationThis study suggests there is considerable scope for workplace adaptation and improvements to meet the needs of employees with disabilities.Employers need and want further specialist practitioner guidance to facilitate workplace inclusion and support adaptation to individual needs.Organisations would benefit from training to raise awareness about potential solutions and approaches that would support more widespread employment of people with disabilities. [ABSTRACT FROM PUBLISHER]

Purpose:Very little is known about how older people from black and minority ethnic (BME) groups caring for someone after a stroke access and engage with social care services. This paper explores both the experiences of carers whose relative was receiving social care services in their own home and the value of a theory of humanising care to understand and explain these experiences. Method:Semi-structured interviews were undertaken with 50 carers from five different ethnic groups: Asian Indian, Asian Pakistani, Black African, Black Caribbean and White British. Data were thematically analysed within a phenomenological framework. Results:Five interacting themes emerged: communication and bureaucracy; time and timing; communication and rapport building; trust and safety; humanity and the human dimensions of care. Many of the experiences could be interpreted within a conceptual framework of humanising care underpinned by eight interacting dimensions of what it means to be treated as an individual and a human. Conclusions:Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity.Implications for RehabilitationExplicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups.Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers’ sense of entitlement and competence in engaging with homecare services.Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services. [ABSTRACT FROM AUTHOR]

Predicting emergence from prolonged disorders of consciousness (PDOC) is important for planning care and treatment. We used machine learning to examine which variables from routine clinical data on admission to specialist rehabilitation units best predict emergence by discharge. A multicentre national cohort analysis of prospectively collected clinical data from the UK Rehabilitation Outcomes (UKROC) database 2010–2018. Patients (n = 1170) were operationally defined as "still in PDOC" or "emerged" by their total UK Functional Assessment Measure (FIM + FAM) discharge score. Variables included: Age, aetiology, length of stay, time since onset, and all items of the Neurological Impairment Scale, Rehabilitation Complexity Scale, Northwick Park Dependency Scale, and the Patient Categorisation Tool. After filtering, prediction of emergence was explored using four techniques: binary logistic regression, linear discriminant analysis, artificial neural networks, and rule induction. Triangulation through these techniques consistently identified characteristics associated with emergence from PDOC. More severe motor impairment, complex disability, medical and behavioural instability, and anoxic aetiology were predictive of non-emergence, whereas those with less severe motor impairment, agitated behaviour and complex disability were predictive of emergence. This initial exploration demonstrates the potential opportunities to enhance prediction of outcome using machine learning techniques to explore routinely collected clinical data. Predicting emergence from prolonged disorders of consciousness is important for planning care and treatment. Few evidence-based criteria exist for aiding clinical decision-making and existing criteria are mostly based upon acute admission data. Whilst acknowledging the limitations of using proxy data for diagnosis of emergence, this study suggests that key items from the UKROC dataset, routinely collected on admission to specialist rehabilitation some months post injury, may help to predict those patients who are more (or less) likely to regain consciousness. Machine learning can help to enhance our understanding of the best predictors of outcome and thus assist with clinical decision-making in PDOC. [ABSTRACT FROM AUTHOR]

Supported self-management (SSM) is an important part of adapting to life after stroke however it is a complex concept. It is unclear what SSM in stroke consists of or how stroke survivors, families, and clinicians can most effectively work together to support person-centred self-management. In this study, we aimed to explore what was most important in making SSM work in community stroke rehabilitation. We conducted a Q-methodology study with stroke survivors (n = 20), community-based stroke clinicians (n = 20), and team managers (n = 8) across four health boards in Scotland, United Kingdom. Participants ranked 32 statements according to their importance in making SSM work. Factor analysis was used to identify shared viewpoints. We identified four viewpoints: (i) A person-centred approach to build self-confidence and self-worth; (ii) Feeling heard, understood, and supported by everybody; (iii) Preparation of appropriate resources; and (iv) Right thing, right place, right time for the individual. Important across all viewpoints were: a trusting supportive relationship; working in partnership; focusing on meaningful goals; and building self-confidence. Differing views exist on what is most important in SSM. These views could be used to inform quality improvement strategies to support the delivery of SSM that considers the preferences of stroke survivors. Clinicians should be aware of their own viewpoint of supported self-management and consider how their perspective may differ from stroke survivors' and colleagues' perspectives of what's important to support self-management. Working in partnership with stroke survivors plus developing a trusting and supportive relationship with them are core components of supporting self-management in the longer term after stroke. Building a sense of self-worth and self-confidence, a focus on meaningful goals, training and support for staff, and tailoring support to people's needs at the right time are important considerations for supporting longer-term engagement in self-management. [ABSTRACT FROM AUTHOR]

The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. Participants (n = 162) were aged 18–74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP. Adults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed. Adults were not satisfied with the availability or quality of physiotherapy services received. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. There is a need to develop physiotherapy services from a life-span perspective for adults living with CP. [ABSTRACT FROM AUTHOR]

To systematically map available evidence for school-based interventions led by allied health (i.e., occupational therapy, physiotherapy, and/or speech and language therapy). We searched for studies in pre-school, primary, secondary, or post-secondary settings, published 2004–2020. We coded study, population, and intervention characteristics. Outcomes were coded inductively, categorised, and linked to the International Classification of Functioning, Disability, and Health. We included 337 studies (33 countries) in an interactive evidence map. Participants were mainly pre-school and primary-aged, including individuals with neurodisability and whole-school populations. Interventions targeted wide-ranging outcomes, including educational participation (e.g., writing, reading) and characteristics of school environments (e.g., educators' knowledge and skills, peer support). Universal, targeted, and intensive interventions were reported in 21.7%, 38.9%, and 60.2% of studies, respectively. Teachers and teaching assistants delivered interventions in 45.4% and 22.6% of studies, respectively. 43.9% of studies conducted early feasibility testing/piloting and 54.9% had ≤30 participants. Sixty-two randomised controlled trials focused on intervention evaluation or implementation. In the United Kingdom, future research should take forward school-based allied health interventions that relate directly to agreed research priorities. Internationally, future priorities include implementation of tiered (universal, targeted, intensive) intervention models and appropriate preparation and deployment of the education workforce. Allied health professionals (occupational therapists, physiotherapists, and speech and language therapists) work in schools supporting children and young people affected by neurodisability but the content, impact, and cost-effectiveness of their interventions are not well-understood. We systematically mapped the available evidence and identified that allied health school-based interventions target highly diverse health-related outcomes and wider determinants of children and young people's health, including educational participation (e.g., literacy) and characteristics of the school environment (e.g., educators' knowledge and skills). Our interactive evidence map can be used to help stakeholders prioritise the interventions most in need of further evaluation and implementation research, including tiered models of universal, targeted, and intensive allied health support. Teachers and teaching assistants play a central role in delivering allied health interventions in schools – appropriate preparation and deployment of the education workforce should therefore be a specific priority for future international allied health research. [ABSTRACT FROM AUTHOR]

To address the paucity of research on patient perspectives regarding return to driving after Total Hip and Total Knee arthroplasty (THA; TKA), and how this impacts on return-to-work. Employed participants, who had undergone THA or TKA, took part in semi-structured telephone interviews. They were asked about support received regarding driving, who provided this information, and the impact of this on their return to driving and consequently work. Thirty-eight people were interviewed. Although sources of information and advice were available, patients struggled to know who to approach. Interviewees reported variations and contradictions in the advice given on when they could safely return to driving after surgery. Of note, there was little difference in the advice given to those who had undergone THA compared to TKA. Many participants devised their own plan for returning to driving There is inconsistency in driving advice provided after THA and TKA. Consequently, patients make their own decisions about how and when to drive, and develop strategies to accelerate the process. Greater clarity is required from healthcare professionals on time frames for driving post-surgery and for advising patients on their responsibilities around informing the DVLA and insurance companies of their surgery. Healthcare professionals should be aware of medico-legal requirements when advising patients about their legal responsibilities regarding driving after joint arthroplasty. Given the pivotal role of driving in the resumption of work after joint arthroplasty, there needs to be greater importance placed on the provision of explicit advice and support on driving for those undergoing orthopaedic surgery. As driving is a complex skill, the advice given to patients should be individualised. Factors to be considered should be the type of vehicle driven e.g., automatic/manual transmission; height of the vehicle from the ground; the side of the surgery; any medication prescribed which might impact on driving, and consideration of any comorbidities. [ABSTRACT FROM AUTHOR]

Undergoing an amputation is a life-altering experience that can involve a protracted and intensive period of care from a range of healthcare professionals. Amputation care within the NHS has historically been criticised. Here we seek to understand how patients are experiencing care by exploring their stories and identifying features of both high- and low-quality care. We analysed patient stories posted on the patient feedback site Care Opinion during the period 2018–2020 to examine how amputee patients (and their families) experience NHS care. Using thematic analysis, we identified four key themes. We found that patients' stories of undergoing an amputation as posted on Care Opinion give overwhelmingly positive feedback on their experiences. Patients report feeling well-supported by empathetic staff, and that the outcomes, in terms of quality of life and restoration of mobility, are beneficial. Time was a common feature within the posts we examined and negative experiences of care often related to untimeliness in a variety of ways. Care Opinion provides a useful and accessible resource for understanding how patients experience amputation care; analysis of stories posted there provides preliminary ideas of the features of "good care" from a patient-centred perspective. Patients undergoing amputations view professionalism of staff as important for good care. Timeliness is important to patients in seeing care in positive terms, ensuring patients are supported in their care during and after amputation in a timely manner is therefore important for achieving good rehabilitation care. Rehabilitation and related services supporting patients who have undergone amputations could usefully patient feedback sites as a means for further understanding the experiences of their patients and for improving services where necessary. [ABSTRACT FROM AUTHOR]

Measuring the physical activity of adults with progressive muscle diseases is important to inform clinical practice, for activity recommendations and for outcomes meaningful to participants in clinical trials. Despite its wide use, the measurement properties of the International Physical Activity Questionnaire (IPAQ) have not been established in a muscle disease population. The sample of 103 adults with progressive muscle diseases included independently mobile participants and wheelchair users. Their home-based activity measured by the IPAQ was compared to simultaneous weeks of accelerometer activity data collected remotely in a longitudinal, measure evaluation study. Validity, reliability, and responsiveness were evaluated for the IPAQ alone, and for the IPAQ used in conjunction with a smart activity monitor. The IPAQ did not demonstrate satisfactory criterion validity, reliability or responsiveness and it systematically overestimated moderate and vigorous physical activity time by 161 minutes per week. Measurement properties of the IPAQ were improved when it was used in combination with a smart activity monitor. The IPAQ did not have satisfactory measurement properties compared to accelerometry in adults with progressive muscle disease. Combining self-report and objective activity measures might improve the accuracy of physical activity assessment in this and other comparable populations. Physical activity is a meaningful health outcome for adults with progressive muscle diseases, for whom precise activity quantification is important because of the potential for activity-related disease exacerbation. The International Physical Activity Questionnaire (IPAQ) had unsatisfactory measurement properties compared to accelerometry; however, these were improved by adjunctive smart activity monitoring. Objective or combined physical activity measurement is recommended over self-report alone for clinical assessment of physical activity as part of rehabilitation and self-management programmes. [ABSTRACT FROM AUTHOR]

Visual perceptual deficits are frequently underdiagnosed in stroke survivors compared to sensory vision deficits or visual neglect. To better understand this imparity, we evaluated current practice for screening post-stroke visual perceptual deficits. We conducted a survey targeted at professionals working with stroke survivors involved in screening visual perceptual deficits across the United Kingdom and the Republic of Ireland. Forty orthoptists and 174 occupational therapists responded to the survey. Visual perceptual deficit screening was primarily conducted by occupational therapists (94%), with 75∼100% of stroke survivors screened per month. Respondents lacked consensus on whether several common post-stroke visual deficits were perceptual or not. During the screening, respondents primarily relied on self-reports and observation (94%), while assessment batteries (58%) and screening tools were underutilised (56%) and selected inappropriately (66%). Respondents reported lack of training in visual perception screening (20%) and physical/cognitive condition of stroke survivors (19%) as extremely challenging during screening. Visual perceptual deficits are screened post-stroke at a similar rate to sensory vision or visual neglect. Underdiagnosis of visual perceptual deficits may stem from both reliance on subjective and non-standardised screening approaches, and conflicting definitions of visual perception held among clinicians. We recommend increased training provision and use of brief performance-based screening tools. Lack of agreement among clinicians on what constitutes as visual perceptual or sensory vision deficits may prove problematic, as precise and exact language is often required for clinical decision-making (e.g., referrals). Biases for more familiar visual (perceptual) deficits held among clinicians during the screening process may lead to other visual deficits being missed. To avoid problems being missed, clinicians should aim to use standardised assessments rather than stroke survivor self-report and observations of function when screening for visual perceptual difficulties. [ABSTRACT FROM AUTHOR]

The aim of this study was to understand how physiotherapeutic encounters were experienced over time by one service user and the extent to which the encounters were person-centred. This narrative inquiry study had one participant purposively sampled due to their extensive experience of physiotherapy in healthcare systems in the United Kingdom. Data were collected through interviews and analysed using Clandinin and Connelly's three-dimensional framework. Time-related aspects of physiotherapeutic encounters were noted in the evolutionary journey of physiotherapy practice. Personal and social aspects were evident in the words and attitude of the physiotherapists. The influence of place was noted in the role that external forces and the environment played in shaping how physiotherapy was experienced. These narratives remind physiotherapists and healthcare providers to reflect on the role they play in shaping the experience of service users and whether those experiences are considered to be person, therapist, or institution centred. Those training pre-registration physiotherapy students need to consider giving students the opportunity to develop and reflect on their philosophy of practice early in the curriculum to enhance the experience of service users in the long-term. It is important for therapists to consider preconceived ideas of what a service user may want, and to listen to them as unique people, with a future journey ahead of them to understand what is truly important to them. Physiotherapists need to reflect on the role they play and the words they use in shaping the experience of care for service users, and whether this is perceived as being person or therapist centred. Physiotherapists who are more person-centred in practice were better placed to promote self-management of long-term conditions. Providing pre-registration physiotherapists with the opportunity to develop their own value-based philosophy of practice during training may enhance the experiences of their service users in the future. [ABSTRACT FROM AUTHOR]

Background: This study recorded the functional health literacy levels of people with musculoskeletal (MSK) conditions from harder to reach groups and explored their experiences in engaging with health care professionals to self-manage their MSK condition. Methods: We recruited participants, identified by key health and social care contacts as likely to have lower health literacy levels, and used semi-structured interviews to collect data. Thematic analysis was used to identify the main key themes arising from the transcribed interviews. Results: Eighteen participants were identified and recruited from harder to reach community populations, 10 were scored as having inadequate functional health literacy on the Short Form Rapid Estimate of Adult Literacy Measure. Three themes were identified in relation to participants' experiences of MSK self-management approaches: engaging with health care services; interpreting the health care providers' message; and facilitating participation in MSK self-management. Conclusions: Our findings indicate that people with a MSK condition, from harder to reach groups, experience multi-morbidity, find health care systems complicated and hear from health care professionals that their MSK condition cannot be cured. People interpreted that a lack of cure meant that nothing could be done to help their MSK pain. Engaging with self-management strategies was not seen as a priority for our participants. Strategies to simplify health communication, more time to process health information and supportive social networks helped our participants to understand and manage their MSK health on a day-to-day basis. MSK conditions are long term and prevalent in the UK with substantial impact on people's daily life. Currently self-management strategies for MSK conditions are poorly communicated and many patients believe that nothing can be done to help their MSK pain. Good clinician communication that supports self-management is needed so that key messages can be effectively understood and used by patients with a range of literacy skills. Health services need to be even more accessible to help all individuals from a range of backgrounds better self-manage their MSK conditions. [ABSTRACT FROM AUTHOR]

Purpose: To establish feasibility, acceptability, and preliminary efficacy of an adapted version of a commercially available, virtual-reality gaming system (the Personalised Stroke Therapy system) for upper-limb rehabilitation with community dwelling stroke-survivors. Method: Twelve stroke-survivors (nine females, mean age 58 years, [standard deviation 7.1], median stroke chronicity 42 months [interquartile range 34.7], Motricity index 14–25 for shoulder and elbow) were asked to complete nine, 40-min intervention sessions using two activities on the system over 3 weeks. Feasibility and acceptability were assessed through a semi-structured interview, recording of adverse effects, adherence, enjoyment (using an 11-point Likert scale), and perceived exertion (using the BORG scale). Assessments of impairment (Fugl–Meyer Assessment Upper extremity), activity (ABILHAND, Action Research Arm Test, Motor Activity Log-28), and participation (Subjective Index of Physical and Social Outcome) were completed at baseline, following intervention, and at 4-week follow-up. Data were analysed using Thematic Analysis of interview and intervention field-notes and Wilcoxon Signed Ranks. Side-by-side displays were used to integrate findings. Results: Participants received between 175 and 336 min of intervention. Thirteen non-serious adverse effects were reported by five participants. Participants reported a high level of enjoyment (8.1 and 6.8 out of 10) and rated exertion between 11.6 and 12.9 out of 20. Themes of improvements in impairments and increased spontaneous use in functional activities were identified and supported by improvements in all outcome measures between baseline and post-intervention (p < 0.05 for all measures). Conclusions: Integrated findings suggested that the system is feasible and acceptable for use with a group of community-dwelling stroke-survivors including those with moderately-severe disability. To ensure feasibility of use and maintenance of an appropriate level of challenge, gaming technologies for use in upper-limb stroke rehabilitation should be personalised, dependent on individual need. Through the use of hands-free systems and personalisation, stroke survivors with moderate and moderately-severe levels of upper-limb impairment following stroke are able to use gaming technologies as a means of delivering upper-limb rehabilitation. Future studies should address issues of acceptability, feasibility, and efficacy of personalised gaming technologies for delivery of upper-limb stroke rehabilitation in the home environment. Findings from this study can be used to develop future games and activities suitable for use in stroke rehabilitation. [ABSTRACT FROM AUTHOR]

Purpose: This first psychometric evaluation of the Patient Categorisation Tool examined its properties as an instrument to measure complexity of needs in a mixed population of patients presenting for specialist neurorehabilitation. Materials/methods: Analysis of a large multicentre cohort of patients (n = 5396) from the national clinical dataset representing 63 specialist rehabilitation services across England. Structural validity was examined using exploratory and confirmatory factor analysis. Concurrent and criterion-validity were tested through a priori hypothesized relationships with other validated measures of resource requirements and dependency. Results: All but two items loaded strongly onto a single principal component with Cronbach's alpha 0.88. A total score of ≥30 identified patients with complex (category A) needs with sensitivity 76% and specificity 75%. However, confirmatory factor analysis provided a better fit when the scale was split into two subscales – a 'Cognitive/psychosocial' and a 'Physical' sub-scale (alpha 0.83 and 0.84, respectively). Moderate convergent and discriminant correlations were consistent with hypothesized relationships. Conclusions: The findings provide some overall support for the Patient Categorisation Tool as a unidimensional tool for measuring complexity of needs for neurorehabilitation, but the subscales may be more suitable for certain groups of patients. Further analysis is now required to evaluate its performance in different conditions. A psychometrically robust tool for measuring the complexity of rehabilitation needs has potential value, both at an individual level for treatment planning, and at a population level for planning and commissioning rehabilitation services. The Patient Categorisation Tool now forms part of the United Kingdom national clinical dataset mandated by the National Health Service in England This psychometric analysis from a large national multicentre cohort representing a diverse range of conditions, provides evidence for its validity as a means to identity patients with complex rehabilitation needs requiring specialist rehabilitation. [ABSTRACT FROM AUTHOR]

Purpose: To explore exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers-Danlos syndrome - hypermobility type and to explore patient experiences of physiotherapy. Methods: A cross sectional questionnaire survey design was used to collect quantitative and qualitative data from adult members of the Hypermobility Syndromes Association and Ehlers-Danlos Syndrome Support UK. Descriptive and inferential statistics were used to analyse the data. Qualitative data was analysed thematically. Results: 946 questionnaires were returned and analysed. Participants who received exercise advice from a physiotherapist were 1.75 more likely to report high volumes of weekly exercise (odds ratio [OR] = 1.75, 95% confidence interval [CI] = 1.30-2.36, p < 0.001) than those with no advice. Participants who believed that exercise is important for long-term management were 2.76 times more likely to report a high volume of weekly exercise compared to the participants who did not hold this belief (OR = 2.76, 95% CI = 1.38-5.50, p = 0.004). Three themes emerged regarding experience of physiotherapy; physiotherapist as a partner, communication - knowledge, experience and safety. Conclusion: Pain, fatigue and fear are common barriers to exercise. Advice from a physiotherapist and beliefs about the benefits of exercise influenced the reported exercise behaviours of individuals with Ehlers-Danlos syndrome - hypermobility type in this survey. Implications for rehabilitation: Exercise is a cornerstone of treatment for Ehlers-Danlos syndrome/Ehlers-Danlos syndrome - hypermobility type. Pain, fatigue and fear of injury are frequently reported barriers to exercise. Advice from physiotherapists may significantly influence exercise behaviour. Physiotherapists with condition specific knowledge and good verbal and non-verbal communication facilitate a positive therapeutic experience. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to describe the collaborative development of a rehabilitation guide for people living with human immunodeficiency virus (HIV) which was adapted from an online resource for clinicians. Methods: We adapted a comprehensive evidence-informed online clinical resource for people living with HIV using a three-phase participatory process. In Phase 1, we interviewed 26 clinicians and 16 people living with HIV to gather recommendations on how to adapt and format the content to benefit people living with HIV. In Phase 2, we adapted the patient education resource using the recommendations that emerged from Phase 1. Phase 3 consisted of comprehensive stakeholder review of the revised resource on the adaptability, usability, communicability, and relevance of the information. Stakeholders participated in an interview to obtain in-depth information on their perspectives. Transcribed interviews underwent qualitative content analysis. Results: Stakeholders indicated that the e-guide had utility for people living with HIV, community HIV service organizations, and care providers. Conclusion: Engaging people living with HIV resulted in a more relevant and meaningful resource that incorporated patients’ values, needs, and preferences. Implications: Involving multiple stakeholders and user groups in the adaptation and evaluation of online patient education resources can assist in meeting patients’ needs through increasing the relevance, organization and presentation of the content, and incorporating patients’ values and needs. Implications for Rehabilitation: Online patient education resources should be adapted in order to maximize relevance and meaningfulness to patients. Involving multiple stakeholders in the adaptation and evaluation of online patient education resources can assist in meeting patients’ needs. Involving multiple stakeholders increases the relevance, organization and presentation of the content and allows the incorporation of patient values and needs. This collaborative approach with an emphasis on meaningful participation of patients and community may be of interest to others interested in promoting knowledge translation. [ABSTRACT FROM AUTHOR]

Purpose: To assess healthcare use and family perception of family-centred care in children and young adults with severe cerebral palsy (CP) within a geographical region of the UK.Method: Young people (4–27years) with severe forms of CP; Gross Motor Function Classification System levels IV and V, were recruitedviaan established case register. Data were collected in the participant’s home using a standardised background proforma and validated questionnaires. The Measure of Processes of Care was used to assess the family’s perception of family-centred care.Results: One-hundred and twenty-three children, young people and their families/guardians participated. Results showed high accessing of specialist services in childhood with a considerable decrease in young adults. Use of generalist services remained relatively constant. The reported use of formal respite services and support groups/youth clubs was relatively poor. Family-centred care was poor in the area of “providing general information” (2.8 ± 1.73) but more moderate in the areas of “providing specific information about the young person” (4.2 ± 1.94), “enabling and partnership” (4.2 ± 1.9), “co-ordinated and comprehensive care” (4.3 ± 1.95) and “respectful and supportive care” (4.7 ± 1.75).Conclusions: The accessing of specialist services and respite care notably decreases amongst adolescents with severe forms of CP and the perception of family-centred care amongst families was fair at best. In particular, the results highlight the need for families to be provided with more general information and advice.Implications for RehabilitationIn a quest to enhance the rehabilitation process in young people with severe forms of cerebral palsy:Commissioners and service providers need to a adopt a more rationalised, needs led approach to service provision across the lifespan of people with severe forms of cerebral palsy, to include an effective and efficient transitional period.Habilitation specialists working with young adults need to continue to recognise the importance of family-centred care in managing this complex and chronic condition.Professionals working within the healthcare system must provide better communication and improve their dissemination of information to the families of children and young people with complex needs. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to investigate and improve understanding of the experiences of patients and their carers during the first month at home following discharge from hospital, thereby enhancing appropriate care from a more informed perspective. Method: In-depth interviews and self-report diaries were used to capture data from 12 patient/carer dyads. Four survivors with marked communication problems were included in this number, two requiring the use of pictures and diagrams to express their views. Interpretative phenomenological analysis (IPA) was used to capture and interpret survivor and carer experiences. Findings: Three superordinate themes were derived from the data. Stroke survivors and their carers described the first month at home as a very dynamic time, recounting a process that involved revisioning (re-examining their identity and the reality of their new situation, including an awareness of their own mortality), reconnecting (with important relationships and previous activities) and revisiting (their past lives, and the stroke event and hospital experience) . These three activities assisted in making and finding sense in their new situation; participants' vision of their lives was revised and revisited as they attempted to reconnect with as much of their past selves and past activities as possible. Conclusions: This study contributes to understandings through in-depth individual accounts of the psychosocial transition of returning home. Details of how people make sense of their altered situation can make a valuable contribution to research, and the knowledge base for care provision. [ABSTRACT FROM AUTHOR]