The social impact of multiple sclerosis - a study of 305 patients and their relatives

Hakim, Eluzai Abe; Bakheit, A. M. O.; Bryant, T. N.; Roberts, Megan; McIntosh-Michaelis, S. A.; Spackman, Angela; Martin, John P.; McLellan, D L

doi:10.1080/096382800296755

Cited by 263 publications

(215 citation statements)

References 17 publications

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“…Previous research has demonstrated that the ability to maintain a paid job is related to the severity of the disease and cognitive function. 20 Findings from this study indicated that those in the "essential group" were significantly less mobile and independent and received significantly more assistance than those in the "less essential" group, as well as perceiving assistance to be more significantly more essential. These findings suggest that this group may have had a more severe form of MS. Once again these findings support those of research from other countries.…”

Section: Discussionmentioning

confidence: 75%

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

O’Hara¹,

Souza

Ide

2004

Disability and Rehabilitation

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Acknowledgement to the Physiotherapy Research Foundation UK for funding the projectThe nature of care giving in a community sample of people with multiple sclerosis. AbstractPurpose 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 24hours. 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.

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Section: Discussionmentioning

confidence: 75%

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

O’Hara¹,

Souza

Ide

2004

Disability and Rehabilitation

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“…Most researchers suggest that MS has a negative impact on relationships and satisfaction with the romantic relationship is lower than in the general population 20,21,22 . Health professionals should be aware of the high rates of SD and low levels of sexual satisfaction among individuals with MS.…”

Section: Discussionmentioning

confidence: 99%

Validation and cross-cultural adaptation of sexual dysfunction modified scale in multiple sclerosis for Brazilian population

Silva

Olival

Stievano

et al. 2015

Arq. Neuro-Psiquiatr.

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Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system (CNS). These patients suffer from various comorbidities, including sexual dysfunction (SD). The lesions of MS may affect regions of the CNS along the pathway of sexual response. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) is a scale that assesses sexual dysfunction. Adapt and validate the MSISQ-19 to Brazilian patients with MS. 204 individuals were evaluated, 134 patients with MS and 70 healthy persons for the control group. It was determined reproducibility, validity, internal consistency and sensitivity of the MSISQ-19-BR. Among patients with MS, 54.3% of male and 71.7% of female presented some kind of SD. In the control group the results were 12.5% and 19.5%, respectively. The MSISQ-19-BR is reproducible, reliable and valid for the Brazilian population and may be used as a tool for assessing the impact of sexual dysfunction in patients with MS.

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“…Looking beyond the obvious discomfort and functional limitations that illness brings about, many studies have shown that people with chronic health problems often experience a shrinkage of social roles, withdrawal from valued occupations, loss of choice and control over lifestyle, and threats to self and identity (e.g. 7,8,9). People whose illness necessitates early retirement often feel cut off from their usual sources of pride, accomplishment and self-esteem (10).…”

Section: Some Key Challenges Of Living With Long-term Illnessmentioning

confidence: 99%

Textile Art Promoting Well‐being in Long‐term Illness: Some General and Specific Influences

Reynolds¹

2004

Journal of Occupational Science

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Abstract:The paper reviews previous research into the meanings of textile art-making for people living with long-term illness. Qualitative accounts of the creative process suggest that textile art-making is a multi-dimensional experience. Some practitioners regard textile artwork as a means of coping with discomfort and other symptoms. For a minority, it enables expressions of anxiety and feelings about loss. Nevertheless, participants place more emphasis on the role of textile art-making in rebuilding a satisfactory identity, and restoring autonomy and quality to life. It fills occupational voids following early retirement, and enables social contacts. Textile artwork also stimulates learning and personal development. It remains possible that any creative occupation delivers such benefits. The paper analyses qualitative accounts from seven participants to identify whether textile art-making has any distinctive experiential qualities. As a creative occupation, it seems to be quite distinctive in being readily accessible even to those who do not consider themselves as artistic. Modern textile art embraces diverse techniques and forms, and practitioners' choice and autonomy are enhanced by having several different projects in process at once. It accepts the use of assistive technology, thereby enabling people with a variety of physical impairments to produce 'mainstream' art. It draws upon rich social traditions, facilitating social contact. Many forms of textile art-making are highly time-consuming, fostering a future orientation, and the creative process is often socially visible within the home, with positive consequences for self-image. This study is exploratory. Further enquiry into the distinctive influences of different creative occupations upon well-being is recommended.

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The social impact of multiple sclerosis - a study of 305 patients and their relatives

Cited by 263 publications

References 17 publications

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

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

Validation and cross-cultural adaptation of sexual dysfunction modified scale in multiple sclerosis for Brazilian population

Textile Art Promoting Well‐being in Long‐term Illness: Some General and Specific Influences

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