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Ignorance about the impact of motor neurone disease (MND) may be undermining services for people with the condition. Challenges around communication in the research setting suggest ways of addressing some potential barriers to quality in the community.

The purpose of this paper is to determine if issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the International Classification of Functioning, Disability and Health (ICF) framework; also to identify gaps in evidence and service provision to optimise clinical care.

Participants with motor neurone disease (MND) (n=44) and their caregivers (n=37) were recruited from a tertiary MND clinic. Cross‐sectional predominantly qualitative methodology was used to explore the perspectives of MND patients and their caregivers on disability and service gaps. Their disability experience and relevant environmental factors were then mapped onto the ICF framework. Personal factors were described. The impact of MND on caregivers was also described.

There were significant gaps in MND care. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“neuropalliative rehabilitation” model) was highlighted. The ICF framework adequately incorporated patient‐and caregiver‐ reported disability in MND.

This is the first review that the authors can identify, that lays the foundation for development of an ICF “Core set” (expert‐selected ICF categories that should be addressed in multidisciplinary care settings) for MND, which could improve consensus of care and communication amongst treating clinicians.

Examines the interaction of patient organisations with the National Institute for Clinical Excellence (NICE) during the first two years of its existence. In particular, it considers the intersection of two policy areas prominent in the Labour Government’s health reforms – patient participation and evidence‐based medicine. Data has been obtained from unstructured interviews with patient/carer representatives from NICE’s committees and patient/carer groups with an interest in NICE’s technology appraisals, supplemented by observation of NICE’s Board and Partners’ Council meetings, and analysis of documentary evidence. The paper focuses on “formal” and “informal” involvement of patient groups in NICE’s structures and appraisals process. Most interviewees felt that the patient voice had been strengthened in these areas, though there was concern about the relative weights of patient and scientific evidence. Thus NICE illustrates two paradoxes in Labour’s policy objectives – centralisation/participation and evidence‐based medicine/patient perspective – which may become problematic.

To map UK biomedical research by analysing biomedical publications from authors with UK institutional affiliation and indexed in Science Citation Index (SCI) and Social Sciences Citation Index (SSCI).

Bibliometric methods to assess the volume of research published, its impact and sources of funding of biomedical research in the UK are used. The analyses also include an examination of national and international collaboration, leading regions and institutions (by volume of output), types of research carried out and its potential impact factor. This was done for all of biomedicine and 32 selected sub‐fields. The data used span 12 years, allowing changes and developments over time to be tracked.

The UK's position as the second largest producer of biomedical research is under threat from Japan and Germany and other countries with traditionally weaker biomedical research base. Strength in malaria and asthma research and relative weakness in surgery and renal medicine is notable. The profile of UK biomedical research has changed significantly in the period analysed, with a doubling of the level of international collaboration, a significant increase in basic research papers and an increase in the potential impact of UK publications. A relative decrease of acknowledgement of UK Government funding was noted, as were increased acknowledgements to UK not‐for‐profit and international organisations.

Bibliometric analyses can provide reliable tools in mapping the development of scholarly disciplines which can be of use, as demonstrated in this paper, in research policy, as well as in domain analysis in information science, library collection development or publishing.

Apart from policy applications, bibliometric research of this type can provide valuable information about changes in the patterns of scholarly communication within a domain (areas of interest in sociology of science and information science) and inform collection development policies in libraries and information centres (by describing literatures: ageing and obsolescence, volume and impact).

This paper seeks to report the key findings of two studies which were undertaken by Rare Disease UK to: understand patients' and their families' experiences of living with a rare disease; identify issues preventing research and access to good quality information, care, treatment and support; identify examples of good practice; and develop recommendations to improve service provision for patients with rare diseases and encourage research.

Across the two reports discussed, a range of methods were used including: a survey of patients/family members; five multi‐stakeholder working groups; conference workshops; a consultation paper; interviews; and desk research.

There are a number of detailed findings across the two reports. At a broad level, the findings identify that despite the diverse range of rare diseases each with different symptoms and prognoses, patients often face similar issues. The report also identifies a number of possible solutions to facilitate research, speed up diagnosis, improve co‐ordination of care and ensure high‐quality information is available to patients and professionals.

The findings and recommendations in the two reports discussed are informing the development of a UK plan for rare diseases by all four of the UK's health departments. This plan will be the first strategic approach to improving service provision for all patients with rare diseases in the UK.

Very little research has been conducted into the experiences of patients with rare diseases or on how to improve service provision for all rare diseases in the UK. As a result, the two reports offer a substantial body of new evidence.

This paper describes the development and evaluation of the Handy 1 rehabilitation robot which is acknowledged as being the most successful low‐cost, commercially available rehabilitation robotic system in the world to‐date[1]. Over 100 people with severe disabilities have benefited from using the Handy 1 on a regular basis. Systems are currently in operation in several countries across the world including the UK, USA, Japan, France, Germany, Finland and Italy.

Purpose: The purpose of this study is to assess the effect of social isolation of minors with a parent or grandparent suffering from amyotrophic lateral sclerosis (ALS) and to determine whether the psychological support offered by an Italian no-profit association helped them to manage stress.

Methodology: This study followed a qualitative research design. The participants responded to in-depth interviews that were processed with inductive thematic analysis.

Findings: Five themes emerged: feedback on the psychological intervention; learning and changes after the intervention; discourses on illness and death in the family; experiences and difficulties during the lockdown and suggestions for other peers who might face the same situation.

Social Implications: Psychological support is necessary for these minors, and it helped them to manage both the stress of living with ALS and the limitations of social relationships during the pandemic. It showed the importance of authentic and honest communication about illness and death that allowed minors to manage anxiety and fear. Positive reinterpretation of these experiences by transforming them into opportunities was also revealed.

Originality: Studies on families with ALS patients are numerous, but studies on children of these patients are still rare, and no study has investigated the impact of the COVID-19 pandemic on these children. This research investigated a topic that has not been covered previously and it also provided the opportunity to know how these children, preadolescents and adolescents living in an already complex environment, have experienced lockdown and restrictions. The study also enriched the literature on this important issue.

How people die and experience the road to death is important for all concerned ‐ the patient who is dying, the family carers and loved ones they leave behind, and the health and social care practitioners. However, family carers often make great emotional and financial sacrifices and also assume heavy administrative roles to support the care of their loved one. This paper reports on the social interactions between patient, carers and professionals during end of life (EOL) care. The findings are based on a primary care trust (PCT) funded consultation that examined the quality of EOL care services in one London borough. The project made use of ethnographic methods (open‐ended qualitative interviews and observations) with 50 borough residents of which 32 were patients and 18 were carers. The findings will consider in more detail the social relationships between patients, carers and professionals. It is suggested that while there are some encouraging signs of good practice among EOL agencies and professionals, greater care is needed on the part of frontline professionals in their day‐to‐day interaction with patients and carers to ensure a better quality of EOL care.

The objective of this paper was to systematically review published studies to determine if disability limits access to health care and to attempt to identify what body functions, structures and activities and participation, as well as contextual factors (environmental and personal factors), interact with the health condition to limit this access. The AMED, CINAHL, EMBASE, Medline and psychINFO databases were searched for original study articles in English, dating from 1974 to 2008. Review articles and expert opinion were excluded. Each study had two independent reviews by either a general practitioner or specialist in rehabilitation medicine. Each study was critically appraised according to the National Service Framework for Long‐term Conditions (Department of Health, 2005a) methodology and recorded on standardised data extraction sheets. Studies of poor quality were excluded. Sixty studies were included. No randomised controlled trials were identified. Studies broadly fell into the following three main groups: database studies (n=27), quantitative surveys (n=20) and qualitative interviews (n=13). Disabled people are restricted in accessing health care and report less satisfaction with their medical care. Many of the identified studies were from the United States (US) and based on subjective reporting. More objective evidence is needed, especially in the UK, to clarify the true level of access to health care in people with disabilities. The complex, interdependent factors in providing health care to disabled people require complex solutions.