Is there a role for citizen science in death and dying research?

The COVID-19 pandemic has brought conversations about death and dying to the fore in a way not experienced for generations. This raises questions around perceptions of death and dying; the role of healthcare and the community in care; and the use of digital media for information and support. Public engagement can provoke a two-way conversation between researchers and the public and includes techniques that can engage the community not only with the topic but also in research. This perspective article considers the potential role of citizen science in death and dying research, including considerations around its potential benefits and constraints

Management of hemiplegic shoulder pain: A UK wide online survey of physiotherapy and occupational therapy practice

Introduction:Hemiplegic shoulder pain (HSP) is a common complication of stroke that can lead to reduced quality of life. The primary aim of the present study was to identify how HSP is assessed, diagnosed and managed in routine clinical practice by physiotherapists (PTs) and occupational therapists (OTs) in the UK. A secondary aim was to identify the challenges to services in the management of HSP. MethodsA questionnaire was developed from similar surveys of musculoskeletal/neurological practice, a review of the literature and consultation with researchers and clinicians. The survey was distributed online to PT’s and OT’s working in stroke rehabilitation via professional bodies’ interest groups. Results: Sixty seven responses were received from PTs (60%) and OTs (40%). The respondents gained knowledge in HSP management through in-service training, clinical supervision and reading (80%). HSP was routinely checked (89%) and the mean time spent on assessment was 10 minutes. Commonly used assessments were glenohumeral subluxation (94%), strength (76%), range of movement (67%), spasticity (79%) and palpation (63%). Interventions included education, exercise and self-management. Patients were discharged when treatment options were exhausted (80%). Time constraints (62%); lack of diagnosis (54%) and training (60%) were the major challenges in providing appropriate care for HSP. Conclusion: The results suggest that a wide range of approaches are utilised by clinicians and that patients are potentially receiving treatment irrespective of the underlying problem due to lack of accurate diagnosis of the cause of HSP. A comprehensive assessment tool and additional training specific to HSP are required to improve the patients’ outcome

An evaluation of the Florence Nightingale Foundation scholarships

The Florence Nightingale Foundation (FNF) is a charity that awards scholarships in leadership, travel and research to nurses, midwives and other healthcare professionals to promote excellence in practice. The FNF offers mentoring support to scholars, and provides support with career development and writing articles for publication, in addition to the financial award. The leadership scholarships are bespoke: leadership scholars can access a range of development opportunities that are specially commissioned for them, and select their programme of study and experiences, based on their individual needs. All scholarships provide opportunities to represent the FNF and to meet other scholars at the FNF annual conference. This article provides an overview of the FNF scholarships, based on the findings of two evaluations that demonstrated the value of these scholarships in improving services for patients and carers, as well as enhancing the careers of individual scholars

Beliefs, motives and gains associated with physical activity in people with osteoarthritis

ObjectivesOsteoarthritis (OA) affects approximately 8.75 million people in the United Kingdom. Physical activity is recommended as a core treatment, yet 44% of people with OA are inactive. Motivation and self‐efficacy for exercise are considered to be key factors contributing to sustained engagement with physical activity. The aim of this study was to explore the beliefs, motives (what an individual aims to attain through participating in physical activity) and gains (what people feel they might get from participation) associated with physical activity engagement in a group of people with OA.Design and methodThis study adopted a cross‐sectional survey research design, using two validated questionnaires: the Exercise Motives and Gains Inventory and the Exercise Self‐Efficacy Scale.ResultsData were gathered from 262 people with OA between August 2015 and January 2016.Those who were most active reported higher levels of both motivation and self‐efficacy and were active for enjoyment, to avoid negative health, and for health and fitness reasons. A comparison of motives and gains revealed higher gain scores for social engagement and enjoyment, compared with associated motive scores.ConclusionThis study provides evidence of the central role that motives, gains and self‐efficacy play in facilitating engagement with physical activity in this population. Future interventions should aim to foster increased self‐efficacy for physical activity and promote autonomous forms of motivation by emphasising the importance of choosing activities which are enjoyable, as well as highlighting the value of social engagement

Exploring the Relationships Between Altered Body Perception, Limb Position Sense, and Limb Movement Sense in Complex Regional Pain Syndrome

© 2018 The Authors Chronic pain is often accompanied by patient-reported distorted body perception and an altered kinesthesia (referring to the senses of limb position and limb movement), but the association between these deficits is unknown. The objectives of this study were to assess body perception and the senses of limb position and limb movement in complex regional pain syndrome (CRPS) and to test whether these variables are related to each other and to pain intensity. Thirteen patients with upper limb CRPS (mean pain intensity, 4.2 ± 2.4 out of 10) and 13 controls were recruited. Body perception was self-reported with a questionnaire, and the senses of limb position (task 1) and of limb movement (task 2) were assessed with a robotic system combined with a 2D virtual reality display. The results showed altered kinesthesia in the patients with CRPS compared with controls (all

Evaluation of a prototype tool for communicating body perception disturbances in complex regional pain syndrome

Patients with Complex Regional Pain Syndrome (CRPS) experience distressing changes in body perception. However representing body perception is a challenge. A digital media tool for communicating body perception disturbances was developed. A proof of concept study evaluating the acceptability of the application for patients to communicate their body perception is reported in this methods paper. Thirteen CRPS participants admitted to a 2-week inpatient rehabilitation program used the application in a consultation with a research nurse. Audio recordings were made of the process and a structured questionnaire was administered to capture experiences of using the tool. Participants produced powerful images of disturbances in their body perception. All reported the tool acceptable for communicating their body perception. Participants described the positive impact of now seeing an image they had previously only imagined and could now convey to others. The application has provided a novel way for communicating perceptions that are otherwise difficult to convey

What is the incidence of complex regional pain syndrome (CRPS) Type I within four months of a wrist fracture in the adult population? A systematic review

© The Author(s) 2020. Introduction: Complex regional pain syndrome (CRPS) is a severe chronic pain condition, the symptoms of which may develop following trauma to a limb. Despite wrist fracture being a common antecedent, estimates of the incidence of CRPS following this injury vary widely. Our objective was to establish the incidence of CRPS in adults within four months of a wrist fracture, using a systematic review of the literature published since 2010. Methods: The databases MEDLINE, PubMed, EMBASE, PsychINFO, CINAHL, BNI and AMED were searched for observational studies reporting the incidence of CRPS following a wrist fracture. Inclusion criteria were the use of a validated diagnostic tool to assess for CRPS within four months of the fracture. Randomised controlled trials and clinical trials were excluded, as were data from patients with evidence of prior neurology. Incidence risk was then extracted or calculated. Included studies were assessed for methodological rigour using the Newcastle–Ottowa Scale for assessment of bias. Results: Nine studies met the inclusion criteria. There was a high degree of heterogeneity in study populations including study setting, fracture management and diagnostic criteria. From the three studies with the highest methodological rigour we determined that the incidence risk of CRPS in adults is between 3.7% and 14% using the Budapest criteria, with an observation of lower rates in conservatively managed fractures. Discussion: We found evidence that the reported incidence of CRPS is influenced by choice of diagnostic criteria, along with the study location and/or how the fracture is managed

Systematic co-development and testing of a digital behaviour change intervention for osteoarthritis and physical activity: Theoretical mapping and acceptability study

Objective: Osteoarthritis (OA) affects 8.75 million people in the UK. Physical activity (PA) is recommended as a core treatment, yet nearly half of people with OA are inactive. Accessible and user-friendly interventions are needed to motivate people with OA to be active. Digital behaviour change interventions (DBCIs) might help to support people with OA to self-manage their own levels of PA. The aim of this project was to co-develop and test a DBCI to motivate people with OA to be active. Methods: A mixed methods design was adopted to build the theoretical foundations, develop, and test a complex DBCI. Two patient research partners with lived experience of OA were recruited onto the project team to assist with intervention development, which was guided by the intervention mapping (IM) approach. Interviews and think-aloud sessions were then used to explore attitudes, values, and perceived effectiveness of the website. Results: The IM approach enabled the development of a prototype website to be illustrated in a clear and transparent way, showing a link between the practical materials adopted within the website and the theoretical constructs they were attempting to change. Potential users highlighted the importance of clear, easy-to-understand information, focusing on enjoyment and social connectedness. Conclusions: DBCI development should be based on theory, adequately described, and thoroughly tested with potential users to understand how they might choose to integrate digital interventions into everyday life