Change search
ReferencesLink to record
Permanent link

Direct link
Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin
Umeå University, Faculty of Medicine, Department of Nursing.
2012 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 9-10, 1364-1373 p.Article in journal (Refereed) Published
Abstract [en]

Aim and objectives. This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. Background. The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. Design. A qualitative descriptive study. Method. This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. Results. The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. Conclusion. The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. Relevance to clinical practice. Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation.

Place, publisher, year, edition, pages
2012. Vol. 21, no 9-10, 1364-1373 p.
Keyword [en]
ALS, content analysis, coping, manageability, next of kin, nurses, nursing, sense of coherence
National Category
URN: urn:nbn:se:umu:diva-55304DOI: 10.1111/j.1365-2702.2011.03809.xISI: 000302721700018OAI: diva2:527316
Available from: 2012-05-19 Created: 2012-05-14 Last updated: 2012-05-19Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full text

Search in DiVA

By author/editor
Graneheim, Ulla H.
By organisation
Department of Nursing
In the same journal
Journal of Clinical Nursing

Search outside of DiVA

GoogleGoogle Scholar
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Altmetric score

Total: 48 hits
ReferencesLink to record
Permanent link

Direct link