Anneliese Synnot

Perceived barriers and facilitators to physical activity for children with disability: a systematic review

Aim The aim of this systematic review was to investigate the perceived barriers and facilitators to physical activity among children with disability. Methods 10 electronic databases were searched from the earliest time available to September 2010 to identify relevant articles. Articles were included if they examined the barriers or facilitators to physical activity for children with disability and were written in English. Articles were excluded if they included children with an acute, transient or chronic medical condition, examined sedentary leisure activities, or societal participation in general. Two reviewers independently assessed the search yields, extracted the data and assessed trial quality. Data were analysed descriptively. Results 14 articles met the inclusion criteria. Barriers included lack of knowledge and skills, the childs preferences, fear, parental behaviour, negative attitudes to disability, inadequate facilities, lack of transport, programmes and staff capacity, and cost. Facilitators included the childs desire to be active, practising skills, involvement of peers, family support, accessible facilities, proximity of location, better opportunities, skilled staff and information. Conclusion Personal, social, environmental, and policy and programme-related barriers and facilitators influence the amount of activity children with disability undertake. The barriers to physical activity have been studied more comprehensively than the facilitators.

A State-of-the-Science Overview of Randomized Controlled Trials Evaluating Acute Management of Moderate-to-Severe Traumatic Brain Injury

Moderate-to-severe traumatic brain injury (TBI) remains a major global challenge, with rising incidence, unchanging mortality and lifelong impairments. State-of-the-science reviews are important for research planning and clinical decision support. This review aimed to identify randomized controlled trials (RCTs) evaluating interventions for acute management of moderate/severe TBI, synthesize key RCT characteristics and findings, and determine their implications on clinical practice and future research. RCTs were identified through comprehensive database and other searches. Key characteristics, outcomes, risk of bias, and analysis approach were extracted. Data were narratively synthesized, with a focus on robust (multi-center, low risk of bias, n > 100) RCTs, and three-dimensional graphical figures also were used to explore relationships between RCT characteristics and findings. A total of 207 RCTs were identified. The 191 completed RCTs enrolled 35,340 participants (median, 66). Most (72%) were single center and enrolled less than 100 participants (69%). There were 26 robust RCTs across 18 different interventions. For 74% of 392 comparisons across all included RCTs, there was no significant difference between groups. Positive findings were broadly distributed with respect to RCT characteristics. Less than one-third of RCTs demonstrated low risk of bias for random sequence generation or allocation concealment, less than one-quarter used covariate adjustment, and only 7% employed an ordinal analysis approach. Considerable investment of resources in producing 191 completed RCTs for acute TBI management has resulted in very little translatable evidence. This may result from broad distribution of research effort, small samples, preponderance of single-center RCTs, and methodological shortcomings. More sophisticated RCT design, large multi-center RCTs in priority areas, increased focus on pre-clinical research, and alternatives to RCTs, such as comparative effectiveness research and precision medicine, are needed to fully realize the potential of acute TBI research to benefit patients.

Online health information seeking: How people with multiple sclerosis find, assess and integrate treatment information to manage their health

The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.

Web Search Behavior and Information Needs of People With Multiple Sclerosis: Focus Group Study and Analysis of Online Postings

Background Multiple sclerosis (MS) patients and their family members increasingly seek health information on the Internet. There has been little exploration of how MS patients integrate health information with their needs, preferences, and values for decision making. The INtegrating and Deriving Evidence, Experiences, and Preferences (IN-DEEP) project is a collaboration between Italian and Australian researchers and MS patients, aimed to make high-quality evidence accessible and meaningful to MS patients and families, developing a Web-based resource of evidence-based information starting from their information needs. Objective The objective of this study was to analyze MS patients and their family members’ experience about the Web-based health information, to evaluate how they asses this information, and how they integrate health information with personal values. Methods We organized 6 focus groups, 3 with MS patients and 3 with family members, in the Northern, Central, and Southern parts of Italy (April-June 2011). They included 40 MS patients aged between 18 and 60, diagnosed as having MS at least 3 months earlier, and 20 family members aged 18 and over, being relatives of a person with at least a 3-months MS diagnosis. The focus groups were audio-recorded and transcribed verbatim (Atlas software, V 6.0). Data were analyzed from a conceptual point of view through a coding system. An online forum was hosted by the Italian MS society on its Web platform to widen the collection of information. Nine questions were posted covering searching behavior, use of Web-based information, truthfulness of Web information. At the end, posts were downloaded and transcribed. Results Information needs covered a comprehensive communication of diagnosis, prognosis, and adverse events of treatments, MS causes or risk factors, new drugs, practical, and lifestyle-related information. The Internet is considered useful by MS patients, however, at the beginning or in a later stage of the disease a refusal to actively search for information could occur. Participants used to search on the Web before or after their neurologist’s visit or when a new therapy was proposed. Social networks are widely used to read others’ stories and retrieve information about daily management. A critical issue was the difficulty of recognizing reliable information on the Web. Many sources were used but the neurologist was mostly the final source of treatment decisions. Conclusions MS patients used the Internet as a tool to integrate information about the illness. Information needs covered a wide spectrum, the searched topics changed with progression of the disease. Criteria for evaluating Internet accuracy and credibility of information were often lacking or generic. This may limit the empowerment of patients in health care choices.

Comparing Face-to-Face and Online Qualitative Research With People With Multiple Sclerosis:

We compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members. Although the merits and challenges of online qualitative research have been considered by others, there is limited literature directly comparing these two data collection methods for people with disability or chronic illness. Twenty-seven people participated in one of four focus groups and 33 people took part in an online forum. Demographic and MS-related characteristics were similar between the two groups, with a slight nonsignificant trend toward nonmetropolitan residence in online forum participants. There was a high level of overlap in the themes generated between groups. Participant responses in the online forum were more succinct and on-topic, yet in the focus groups interaction was greater. Online qualitative research methods can facilitate research participation for people with chronic illness or disability, yielding generally comparable information to that gathered via face-to-face methods.

Perceived barriers and facilitators to participation in physical activity for children with disability: a qualitative study.

BackgroundChildren with disability engage in less physical activity compared to their typically developing peers. Our aim was to explore the barriers and facilitators to participation in physical activity for this group.MethodsTen focus groups, involving 63 participants (23 children with disability, 20 parents of children with disability and 20 sport and recreation staff), were held to explore factors perceived as barriers and facilitators to participation in physical activity by children with disability. Data were analysed thematically by two researchers.ResultsFour themes were identified: (1) similarities and differences, (2) people make the difference, (3) one size does not fit all, and (4) communication and connections. Key facilitators identified were the need for inclusive pathways that encourage ongoing participation as children grow or as their skills develop, and for better partnerships between key stakeholders from the disability, sport, education and government sectors. Children with disabilities’ need for the early attainment of motor and social skills and the integral role of their families in supporting them were considered to influence their participation in physical activity. Children with disability were thought to face additional barriers to participation compared to children with typical development including a lack of instructor skills and unwillingness to be inclusive, negative societal attitudes towards disability, and a lack of local opportunities.ConclusionsThe perspectives gathered in this study are relevant to the many stakeholders involved in the design and implementation of effective interventions, strategies and policies to promote participation in physical activity for children with disability. We outline ten strategies for facilitating participation.

Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol

BackgroundIncreasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.MethodsThis project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).DiscussionThis project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.

Adherence to Guidelines in Adult Patients with Traumatic Brain Injury: A Living Systematic Review

Guidelines aim to improve the quality of medical care and reduce treatment variation. The extent to which guidelines are adhered to in the field of traumatic brain injury (TBI) is unknown. The objectives of this systematic review were to (1) quantify adherence to guidelines in adult patients with TBI, (2) examine factors influencing adherence, and (3) study associations of adherence to clinical guidelines and outcome. We searched EMBASE, MEDLINE, Cochrane Central, PubMed, Web of Science, PsycINFO, SCOPUS, CINAHL, and grey literature in October 2014. We included studies of evidence-based (inter)national guidelines that examined the acute treatment of adult patients with TBI. Methodological quality was assessed using the Research Triangle Institute item bank and Quality in Prognostic Studies Risk of Bias Assessment Instrument. Twenty-two retrospective and prospective observational cohort studies, reported in 25 publications, were included, describing adherence to 13 guideline recommendations. Guideline adherence varied considerably between studies (range 18-100%) and was higher in guideline recommendations based on strong evidence compared with those based on lower evidence, and lower in recommendations of relatively more invasive procedures such as craniotomy. A number of patient-related factors, including age, Glasgow Coma Scale, and intracranial pathology, were associated with greater guideline adherence. Guideline adherence to Brain Trauma Foundation guidelines seemed to be associated with lower mortality. Guideline adherence in TBI is suboptimal, and wide variation exists between studies. Guideline adherence may be improved through the development of strong evidence for guidelines. Further research specifying hospital and management characteristics that explain variation in guideline adherence is warranted.

Translating Falls Prevention Knowledge to Community-Dwelling Older PLWD: A Mixed-Method Systematic Review

PURPOSE OF THE STUDY Falls prevention evidence is strong, but little is known about uptake of strategies for people living with dementia (PLWD). This mixed-method systematic review aimed to integrate evidence of falls prevention efficacy with views/experiences of PLWD. DESIGN AND METHODS Eight electronic databases were searched. Inclusion criteria included quantitative or qualitative studies examining knowledge translation of falls prevention strategies in community-dwelling PLWD and/or their caregiver. Study quality was assessed, and findings are narratively described. RESULTS Six quantitative and five qualitative studies were included. Study quality was mixed. Quantitative studies showed limited evidence of effectiveness on reduction in falls risk, falls and hospitalization rates, nursing home admission, decline in activities of daily living, and adherence to strategies. Qualitative themes showed inclusion of caregiver and health professionals as key to program success, but many factors influence participation. IMPLICATIONS Synthesizing the findings generated a new understanding of falls prevention for this high-risk group. A focus upon health professional and caregiver involvement and accommodation of individual preferences may result in increased engagement with falls prevention strategies.

An exploratory study of how sports and recreation industry personnel perceive the barriers and facilitators of physical activity in children with disability

Abstract Purpose: To explore the perceived barriers and facilitators to participation in physical activity among children with disability in physical activity and community sports from the perspective of sports and recreation industry personnel. Method: A convenient sample of 24 participants was recruited from delegates attending a symposium on physical activity for organisations in the sport and recreation sector in Victoria, Australia. The participants completed a brief questionnaire. Data were analysed by content analysis using an inductive approach. Results: The participants reported 25 facilitators and 20 barriers to participation for children with disability. The top five reported facilitators were: welcoming providers, support and encouragement from parents or others, inclusive providers, adaptable approaches and accessibility of facilities. The top five reported barriers were: inaccessible facilities, non-inclusive providers, transport, lack of relevant opportunities and cost. Conclusions: Sports industry personnel share a similar perspective to families of potential barriers and facilitators to engagement by children with disability in physical activity and community sports. Policy change was not considered as a facilitator of physical activity, even though four of the top five facilitators identified could be implemented through local policy change. Implications for Rehabilitation There are multiple factors that interact with each other which influence the participation by children with disability in physical activity and community sports. The sports and recreation industry should consider policy change as a relevant way to facilitate participation by children with disability in physical activity. More professional development and disability engagement opportunities for sports and recreation industry personnel may help address some of the barriers to participation for children with disability experience.