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Older adults' perspectives on the positive and negative aspects of living with multiple sclerosis
- Authors:
- FINLAYSON Marcia, van DENEND Toni, DALMONTE Julie
- Journal article citation:
- British Journal of Occupational Therapy, 68(3), March 2005, pp.117-124.
- Publisher:
- Sage
This study examines the perspectives of people ageing with multiple sclerosis on the positive and negative aspects of living with this disease. Twenty-seven people with multiple sclerosis aged 55 and over were recruited from the National Multiple Sclerosis Society and were interviewed twice. The first interview was semi-structured and the second involved the administration of standardised scales from the Multiple Sclerosis Quality of Life Inventory. The positive aspects of multiple sclerosis included social benefits, becoming a better helper, realising potential, strengthening family and discovering resources. The negative aspects included loss of mobility, symptoms, social disadvantages, uncertainty, loss of independence and control, missed opportunities and expense. The people with higher mental health scores were more likely to report social benefits. The findings point to the importance of a client-centred approach to therapy. Suggests the use of semi-structured assessment facility may facilitate the identification of the disabled experience, which can be used to build on clients' strengths and positive experiences.
Planting the evidence
- Author:
- -
- Journal article citation:
- Community Care, 24.4.03, 2003, pp.38-39.
- Publisher:
- Reed Business Information
Reports on the case of a multiple sclerosis suffer who started using cannabis to ease her pain. Discusses the reaction of her care worker.
Development of the benefit finding in multiple sclerosis (MS) caregiving scale: a longitudinal study of relations between benefit finding and adjustment
- Authors:
- COX Stephen, PAKENHAM Kenneth
- Journal article citation:
- British Journal of Health Psychology, 13(4), November 2008, pp.583-602.
- Publisher:
- Wiley
This longitudinal study investigated the dimensions, stability, and validity of the benefit finding in multiple sclerosis caregiving (BFiMSCare) scale. Participants were 232 carers of persons with MS and their care recipients recruited in Australia. Questionnaires were completed at Time 1 and 12 months later (Time 2). Factor analysis of the BFiMSCare scale revealed six psychometrically sound factors: enriched relationship; spiritual growth; family relations growth; life-style gains; inspiration; and relationship opportunities. Results of regression analyses indicated that the Time 1 BFiMSCare factors and the total score accounted for significant amounts of variance in each of the Time 1 positive adjustment outcomes (life satisfaction, positive affect, dyadic adjustment) and in Time 2 positive affect and dyadic adjustment. The BFiMSCare total score predicted all Time 2 adjustment domains (positive affect, dyadic adjustment, care recipient adjustment ratings of carer) except life satisfaction and distress, whereas the six factors as a block predicted positive affect and life satisfaction. Findings delineate the dimensional structure of BF in caregiving and the differential links between BF dimensions and adjustment, and have implications for the measurement of BF.
Assessments of nursing home guidelines for quality of care provided to residents with multiple sclerosis
- Authors:
- BUCHANAN Robert J., et al
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 12(4), 2013, pp.237-255.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study assessed the opinions of nursing directors about quality guidelines developed by the National Multiple Sclerosis Society (NMSS) to assist with the care of nursing home residents with multiple sclerosis (MS). Data were collected in a survey of nursing directors at 800 nursing facilities, with 64 nursing directors participating (8.2% response rate). Participating nursing facilities are similar to other nursing homes for facility characteristics and the number of MS residents receiving care. Large majorities of participants thought these NMSS guidelines were important to the development of care plans and staff training. However, most nursing directors were unaware of these guidelines. (Publisher abstract)
Fulfilling a sense of duty: how men and women giving care to spouses with multiple sclerosis interpret this role
- Authors:
- BOEIJE Hennie, van DOORNE-HUISKES Anneke
- Journal article citation:
- Community Work and Family, 6(3), December 2003, pp.223-244.
- Publisher:
- Taylor and Francis
This Dutch qualitative study examines how spouses experience caregiving when predominantly motivated by a sense of duty and addresses whether any differences between female and male caregivers can be detected. Semi-structured interviews were conducted with eight male and five female caregivers providing total care to their spouses who are disabled as a result of multiple sclerosis (MS). The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. Participants involved in this study maintain caregiving despite the unfavourable changes they have noticed in their relationships. Males and females develop different perspectives on caregiving, illustrated by two exemplary case stories. Explanations for these outcomes are sought in differences in moral orientations between women and men and in gender differences regarding their feelings of duty and rights. The results shed light on previous findings that female caregivers report more stress than male caregivers and as such pertain on the discussion of home health care.