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Continuation of caregiving among partners who give total care to spouses with multiple sclerosis
- Authors:
- BOEIJE Hennie R., DUIJNSTEE Mia S.H., GRYPDONCK Maria H.F.
- Journal article citation:
- Health and Social Care in the Community, 11(3), May 2003, pp.242-252.
- Publisher:
- Wiley
Addresses the total care phase in which spouses give direct and ongoing personal care to their partners with multiple sclerosis (MS). The dyadic nature of caregiving is stressed by examining the roles which both spouses play in establishing a commitment that results in the continuation of caregiving. For this purpose, 17 couples facing MS were selected in the Netherlands and Belgium. Ten females and 7 males were disabled, all living with partners who provided a full range of care. Both partners were interviewed separately about their motivation to give care, dependency on help, the continuation of caregiving and their relationship. The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. The findings support previous studies: continuation of caregiving is the result of an interchange between the partners. The commitment established can be expressed in terms of inevitability, shared misfortune, reciprocity and the desire to prevent admission to a nursing home. Three aspects appear to contribute to the creation of commitment and the ensuing continuation of caregiving: marital loyalty, the arbitrariness of the disease, and its serious nature. For community care it is important to consider the negotiations between partners and the impact of caregiving on their relationship.
Missing pieces: a chronicle of living with a disability
- Author:
- ZOLA Irving Kenneth
- Publisher:
- Temple University Press
- Publication year:
- 2003
- Pagination:
- 246p.
- Place of publication:
- Philadelphia, PA
The author started out in the role of a social scientist on a seven-day excursion to acquaint himself with an extraordinary experiment in living, Het Dorp, one of the few places in the world designed to promote "the optimum happiness" of those with severe physical disabilities. Neither a medial center nor a nursing home, Het Dorp is a village in the western-most part of the Netherlands. What began as a sociological attempt to describe this unusual setting became, through the author's growing awareness, what can only be called a socio-autobiography. Resuming his prior dependence on a wheelchair, the author experienced his own transformation from someone who is "normal" and "valid" to someone who is "invalid." The routine of Het Dorp became his: he lived in an architecturally modified home, visited the workshops, and shared meals, social events, conversation, and perceptions with the remarkably diverse residents. The author confronts some rarely discussed issues, the self-image of a person with a chronic disability, how one fills one's time, how one deals with authority and dependence, and love and sex.
Discrimination and delusional ideation
- Authors:
- JANSSEN I., et al
- Journal article citation:
- British Journal of Psychiatry, 182(1), January 2003, pp.71-76.
- Publisher:
- Cambridge University Press
In the UK and The Netherlands, people with high rates of psychosis are chronically exposed to discrimination. A 3-year prospective study of cohorts with no history of psychosis and differential rates of reported discrimination on the basis of age, gender, disability, appearance, skin colour or ethnicity and sexual orientation was conducted in the Dutch general population (n=4076). The main outcome was onset of psychotic symptoms (delusions and hallucinations). The rate of delusional ideation was 0.5% (n=19) in those who did not report discrimination, 0.9% (n=4) in those who reported discrimination in one domain, and 2.7% (n=3) in those who reported discrimination in more than one domain (exact P=0.027). This association remained after adjustment for possible confounders. No association was found between baseline discrimination and onset of hallucinatory experiences. Perceived discrimination may induce delusional ideation and thus contribute to the high observed rates of psychotic disorder in exposed minority populations.