Service use and needs of people with motor neurone disease and their carers in Scotland

Authors: Van Teijlingen, E.R., Friend, E. and Kamal, A.D.

Journal: Health and Social Care in the Community

Volume: 9

Issue: 6

Pages: 397-403

ISSN: 0966-0410

DOI: 10.1046/j.1365-2524.2001.00320.x

Abstract:

A nationsal study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.

Source: Scopus

Service use and needs of people with motor neurone disease and their carers in Scotland.

Authors: van Teijlingen, E.R., Friend, E. and Kamal, A.D.

Journal: Health Soc Care Community

Volume: 9

Issue: 6

Pages: 397-403

ISSN: 0966-0410

DOI: 10.1046/j.1365-2524.2001.00320.x

Abstract:

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.

Source: PubMed

Service use and needs of people with motor neurone disease and their carers in Scotland

Authors: van Teijlingen, E.R., Friend, E. and Kamal, A.D.

Journal: HEALTH & SOCIAL CARE IN THE COMMUNITY

Volume: 9

Issue: 6

Pages: 397-403

eISSN: 1365-2524

ISSN: 0966-0410

DOI: 10.1046/j.1365-2524.2001.00320.x

Source: Web of Science (Lite)

Service use and needs of people with Motor Neurone Disease and their carers in Scotland

Authors: van Teijlingen, E., Friend, E. and Kamal, A.D.

Journal: Health & Social Care in the Community

Volume: 9

Pages: 397-403

DOI: 10.1046/j.1365-2524.2001.00320.x

Abstract:

A nationsal study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.

Source: Manual

Preferred by: Edwin van Teijlingen

Service use and needs of people with motor neurone disease and their carers in Scotland.

Authors: van Teijlingen, E.R., Friend, E. and Kamal, A.D.

Journal: Health & social care in the community

Volume: 9

Issue: 6

Pages: 397-403

eISSN: 1365-2524

ISSN: 0966-0410

DOI: 10.1046/j.1365-2524.2001.00320.x

Abstract:

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.

Source: Europe PubMed Central