Chronic Illness

Chronic low back pain is the commonest cause of disability for adults of working age. It is a complex problem frequently encapsulated as a bio-psychosocial issue, yet the social element has received less attention than it deserves, particularly for low-income and socially deprived patients. Rehabilitation programmes are often based on increasing function through cognitive and behavioural techniques, which, for many reasons, may be less effective for the socially disadvantaged. In this paper we discuss the potential barriers to successful rehabilitation in socially deprived groups and we look at possible factors that may need to be considered when designing interventions.

Health-related quality-of-life measures have been increasingly used in research into neurological disorders in recent years. The aim of this paper is to provide an objective appraisal of the evidence in regard to disease-specific quality-of-life measures used in research on health interventions for three degenerative neurological disorders: multiple sclerosis, motor neurone disease/amyotrophic lateral sclerosis and Parkinson's disease. A comprehensive search strategy was developed to include nine relevant electronic databases. Only studies pertaining to patient-based outcome measurements in multiple sclerosis, motor neurone disease and Parkinson's disease were included. We identified 76 eligible studies. As studies consisted of descriptive and cross-sectional survey study designs, results were reported qualitatively rather than in the form of a meta-analysis. Four disease-specific measures were found for Parkinson's disease, 11 for multiple sclerosis and one for motor neurone disease. We conclude that health-related quality-of-life measures are useful in assessing the impact of treatments and interventions for neurological disorders. However, further research is needed on the development of instruments using psychometric methods and on the validation, utilization and responsiveness of instruments to change.

Objectives: Given the potential for the Internet to be used as a dynamic, interactive medium for providing information, changing attitudes and behaviour and enhancing social support, it is important to consider whether what is currently available online for chronic illness self-management adequately harnesses this potential. The objective of this paper was to review the content of diabetes self-management websites and to identify strengths and limitations of online diabetes self-management.

Methods: We reviewed and coded features of 87 publicly available diabetes websites hosted by governmental, health plan, commercial, pharmaceutical, and not-for-profit organizations. We assessed whether each website was using online opportunities in the areas of interactivity, theory-based interventions, social support, and evidence-based care.

Results: The majority of sites provided information, essentially using an electronic newspaper or pamphlet format. Few sites offered interactive assessments, social support or problem-solving assistance, although there were some significant differences in these characteristics across the types of site.

Discussion: Current diabetes websites fall short of their potential to help consumers. Suggestions are made for ways to improve the helpfulness and interactivity of these resources.

Objectives: To understand family doctors' constructs of long-term therapeutic relationships with patients in primary care.

Methods: Semi-structured interviews were administered to general practitioners with >5 years of experience (n=28) working in an English semi-rural district, and the results were subjected to constant comparative qualitative analysis.

Results: Participants identified pastoral relationships as long-standing patterns of doctor—patient interaction aimed at providing reliable supportive care indirectly concerned with clinical medicine. Holding work was identified as a technique for structuring and delivering care within pastoral relationships. Pastoral relationships and holding work were seen as valuable in the affective management of people with long-standing chronic illness, especially mild-to-moderate depression and anxiety.

Discussion: At a time when primary care is undergoing significant structural change, respondents in this study laid emphasis on personal and continuing relationships with patients who had diffuse needs connected with the experience of complex and chronic problems, and their accounts intimately connected life events with health status. Importantly, these accounts suggest that such relationships are hard to define and therefore hard to measure, but have important therapeutic purposes.

Objectives: To examine how people from Bradford's Pakistani Muslim community experience living with epilepsy. Specifically, the paper addresses social interactions and negotiations with care providers and considers how different understandings of epilepsy are integrated.

Methods: Interviews were conducted with a sample of Bradford's Pakistani Muslim community ( n=20). Interviews were analysed to identify themes and significant areas of shared concern.

Results: This paper identifies popular, professional and folk sectors contributing to an individual's `health system'. Where sectors overlap, zones of hybridity are created: that is, a person might simultaneously seek help from a doctor and from a religious healer, or might offer explanations for seizures that include neurological and spiritual components.

Discussion: While there are many similarities between the experiences of these minority ethnic community members and published work on the lived experience of epilepsy in other communities, there are also important differences that service providers need to recognize and respond to. Differences include forms of cultural expression and specific language needs. Improving communication between professionals and persons with epilepsy needs to be prioritized.