A discussion of the information needs of people with multiple sclerosis (MS) and the implications for information provision based on a national UK survey of people with MS

This research took place between January and October 2002. It was conducted by the Department of Information Science at Loughborough University and was commissioned and funded by the Multiple Sclerosis Trust (MS Trust). In this article the identified information needs are discussed and possible solutions explored including the use of Extensible Mark–up Language (XML) and Extensible Stylesheet Language (XSL). Qualitative and quantitative methods were used to study the information needs of people with multiple sclerosis (people with MS) in the United Kingdom. 103 people with MS were involved in focus groups that helped to identify significant situations that people with MS had experienced. 4100 people with MS were sent questionnaires (approximately 5% of the MS population). 2030 (49.5%) responded in the time specified. Categories of information need were identified. Their importance and difficulty in obtaining them quantified. The research highlighted how, although people shared many information needs, there were significant differences in terms of: ♦ people’s desire for the information (some people did not want apparently useful information); ♦ the topics they were interested in (due to their situation); ♦ how they wanted that information (due to the physical and psychological condition of the person). Information provision to people with MS was found to have improved dramatically over the last seven years. Out of those respondents who had been diagnosed in the last five years 71% thought they had received information whereas 29% did not, whereas only 29% diagnosed in 1980 stated that they received information. Taking the total surveyed population 43% thought they had not received information. Information provision was found to be inconsistent in terms of subjects covered. However it should be borne in mind that at the time of diagnosis, and also afterwards, it may be difficult for people to take on board information for a variety of reasons. Furthermore, as indicated above, different individual needs means that information provision is a complex task. Many intervening factors can make it fail. The research made it clear how access to relevant information, provided in an appropriate way, could significantly improve the quality of life of the person 2 with MS and that there is considerable scope for improving provision of information to people with MS

Problematic clinical features of powered wheelchair users with severely disabling multiple sclerosis

This article is made available through the Brunel Open Access Publishing Fund. Copyright @ 2014 Informa UK Ltd.Purpose: The aim of this study is to describe the clinical features of powered wheelchair users with severely disabling multiple sclerosis (MS) and explore the problematic clinical features influencing prescription. Method: Retrospective review of electronic and case note records of recipients of electric-powered indoor/outdoor powered wheelchairs (EPIOCs) attending a specialist wheelchair service between June 2007 and September 2008. Records were reviewed by a consultant in rehabilitation medicine, data systematically extracted and entered into a computer database. Further data were entered from clinical records. Data were extracted under three themes; demographic, diagnostic, clinical and wheelchair factors. Results: Records of 28 men mean age 57 (range 37–78, SD 12) years and 63 women mean age 57 (range 35–81, SD 11) years with MS were reviewed a mean of 64 (range 0–131) months after receiving their wheelchair. Twenty two comorbidities, 11 features of MS and 8 features of disability were thought to influence wheelchair prescription. Fifteen users were provided with specialised seating and 46 with tilt-in-space seats. Conclusions: Our findings suggest that people with severe MS requiring an EPIOC benefit from a holistic assessment to identify problematic clinical features that influence the prescription of the EPIOC and further medical and therapeutic interventions

Recipients of electric-powered indoor/outdoor wheelchairs provided by a National Health Service: A cross-sectional study

This is the post-print version of the final paper published in Archives of Physical Medicine and Rehabilitation. The published article is available from the link below. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. Copyright @ 2013 by the American Congress of Rehabilitation Medicine.OBJECTIVE: To describe the characteristics, across all ages, of powered wheelchair users and the assistive technology prescribed by a regional specialist wheelchair service DESIGN: Cross-sectional study SETTING: Regional wheelchair service provided to those fulfilling strict eligibility criteria by a National Health Service serving a population of 3 million. PARTICIPANTS: 544 Electric Powered Indoor/outdoor wheelchair (EPIOC) users. INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: Demographic, clinical/diagnostic details of EPIOC recipients including pain, (kypho)scoliosis and ventilators. Technical features including specialised (adaptive) seating (SS), tilt in space (TIS), and modified control systems. Factors were related to age groups: 1 (0-15), 2 (16-24), 3 (25-54), 4 (55-74) and 5 (75+). RESULTS: 262 men mean age 41.7 (range 8-82, sd 20.7) and 282 women mean age 47.2 (range 7-92, sd 19.7) years were studied. Neurological/neuromuscular conditions predominated (81%) with cerebral palsy (CP) (18.9%) and multiple sclerosis (16.4%). Conditions presenting at birth or during childhood constituted 39%. 99 had problematic pain, 83 a (kypho)scoliosis and 11 used ventilators. SS was provided to 169 users (31%), the majority had CP or muscular dystrophy. TIS was used by 258 (53%). Younger people were more likely to receive TIS than older ones. Only 92 had SS and TIS, mean age 29 (range 8-72, sd 17.8) years. 52 used modified control systems. CONCLUSIONS: The diversity of EPIOC users across age and diagnostic groups is shown. Their complex interrelationships with these technical features of EPIOC prescription are explored. Younger users were more complex due to age-related changes. This study provides outcomes of the EPIOC prescription for this heterogeneous group of very severely disabled people

The nature of care giving in a community sample of people with multiple sclerosis

Purpose: The provision of informal care plays a crucial role in supporting those with long term illness such as MS to stay in the community, but there is no recent United Kingdom (UK) research into the nature of this care provision and how it interacts with professional community care. The aim of this study was to investigate the nature of informal and professional care in a community population of people with MS living in the UK from the perspectives of people with MS. Method: Data on the Standard Day Dependency Record (SDDR), Barthel Index, a measure of disability, and SF-36 were collected from a community sample of volunteers with MS from a postal questionnaire and visits from researchers. Results: The response rate was 61%, (n = 169). Respondents in this study were most likely to be assisted by family rather than health or social service professionals and the help was considered essential for approximately 70% of individuals. Only 15% of respondents in this survey received visits from a professional in the preceding 24 h. There was a subgroup who considered help to be significantly more essential and who required assistance on more occasions by the SDDR (t = 13.01, df = 622, p < 0.001, t = 10.38, df = 36.4, p < 0.001). Other subgroups were also identified who may be in need of support from professionals but who were not receiving it. Conclusions: There are reports of considerable amounts of care being provided by families to people with MS who may not be receiving the support required from professional caregivers. Further work needs to establish which groups need assistance and what form this assistance should take

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

The pain experiences of powered wheelchair users

Copyright © 2012 Informa UK, Ltd. This is the author's accepted manuscript. The final published article is available from the link below.Purpose: To explore the experience of pain and discomfort in users of electric-powered indoor/outdoor wheelchairs (EPIOCs) provided by a National Health Service. Methods: EPIOC users receiving their chair between February and November 2002 (N=74) were invited to participate in a telephone questionnaire/interview and 64 (aged 1081 years) agreed. Both specific and open-ended questions examined the presence of pain/discomfort, its severity, minimizing and aggravating factors, particularly in relation to the EPIOC and its use. Results: Most EPIOC users described experiences of pain with 17% reporting severe pain. Over half felt their pain was influenced by the wheelchair and few (25%) considered their chair eased their symptoms. The most common strategy for pain relief was taking medication. Other self-help strategies included changing position, exercise and complementary therapies. Respondents emphasized the provision of backrests, armrests, footrests and cushions which might alleviate or exacerbate pain, highlighting the importance of appropriate assessment for this high dependency group. Conclusions: Users related pain to their underlying medical condition, their wheelchair or a combination of the two. User feedback is essential to ensure that the EPIOC meets health needs with minimal pain. This becomes more important as the health condition of users changes over time

Service and support requirements of people with younger onset dementia and their families final report, August, 2012

In 2011, Alzheimer’s Australia NSW (AlzNSW) was engaged by Ageing, Disability and Home Care (ADHC) to research the service and support requirements of people with younger onset dementia and their families in New South Wales. AlzNSW partnered with the Social Policy Research Centre (SPRC) and UnitingCare Ageing to conduct the research. This report outlines the methods, findings and policy implications of the research. Dementia is a major cause of disability amongst older people and some younger people aged under 65 years, causing ‘progressive change and degeneration in cognitive mental functions, such as memory, language, rational thinking and social skills, as well as behaviour, emotion and personality’ (Mocellin, Scholes and Velakoulis, 2008:1). Younger onset dementia is defined as dementia which occurs before the age of 65 years and under 50 years for Aboriginal people. &nbsp; *Other authors -&nbsp;Ariella Meltzer, Karen R Fisher, Denise Thompson and Robyn Fain

The need for support: Young people living through a family health crisis

Young people living with a family health crisis are found to experience high levels of distress, anxiety, low mood and depressive symptoms and are at risk of becoming disengaged with education, socially isolated and uncertain regarding what the future will hold for them. A body of research indicates that practical intervention, including youth work, engagement with other young people and targeted support can have a significant impact upon a young person’s capacity to cope with a complex family health crisis and develop self-reliant behaviours. Despite the plethora of evidence to indicate the need for systems of support for children and young people experiencing a family health crisis, current provision across the UK is inconsistent, inequitable and not clearly underpinned by policy intervention. This study sets out to indicate the extent and nature of need of children and young people who are living with a family health crisis in Britain, the type of support they require and the ways in which Hope Support meets those needs

Is there a standard procedure for assessing and providing assistive devices for people with neuro-disabling conditions in United Kingdom? A nation-wide survey

Background: Assistive devices are currently provided to people with neuro-disabling conditions to promote or maintain independence in activities of daily living. However, it is unclear whether assessment procedures performed by health care professionals to guide the provision of assistive devices are standardized.  Objective: To explore the assessment and service-delivery processes of assistive devices for people with multiple sclerosis, cerebrovascular disease and Parkinson's disease experiencing physical disability by health care professionals in the United Kingdom.  Methods: A survey was conducted among UK health care professionals working with people with neuro-disabling conditions. Descriptive and content analyses were used to code survey data.  Results: In total, 231 health care professionals completed the survey: 93 occupational therapists, 136 physiotherapists and 2 assistant practitioners. Less than half of the respondents (46%) reported use of local, national, or combined guidelines when assessing a service user's suitability or need for assistive devices. When guidelines were used, they were not consistent and not specifically for assistive devices. The respondents stated that when users were allocated small and portable assistive devices, they were supplied within four weeks. This period increased for large equipment, major home adaptions or if external specialist services and/or funding was needed.  Conclusions: Standardized operating procedures for assistive device provision are not being carried out within the UK. Variable access to assistive devices supplied by the state indicates inequity across regions. Future research should explore potential benefits of developing standardized assessment procedures for the provision of assistive devices and devise methods to reduce current variability in service delivery