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Next-of-kin caregivers in palliative home care: from control to loss of control
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ, Quality Improvement and Leadership in Health and Welfare.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. Quality improvements, innovations and leadership in health care and social work. (KILVO)
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. Quality improvements, innovations and leadership in health care and social work. (KILVO)
2008 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 64, no 6, 578-586 p.Article in journal (Refereed) Published
Abstract [en]

AIM: This paper is a report of a study to describe situations influencing next-of-kin caregivers' ability to manage palliative care in the home.

BACKGROUND: Palliative home care often involves major resources from next-of-kin, municipal and county personnel. Next-of-kin caregivers' situation is depicted as so demanding and exhausting that it can affect their mental health and limit their ability to continue as a caregiver.

METHODS: A qualitative study using the Critical Incident Technique was conducted. Nine next-of-kin caregivers from palliative home care were strategically chosen and data were collected using audiotaped interviews in 2005.

FINDINGS: The analysis resulted in two main areas: 'Maintaining control' and 'Losing control'. Next-of-kin caregivers wanted to maintain control over their lives by being continuously available 24 hours a day and by supporting and taking complete responsibility for all of the patient's needs. They lost this control when professional assistance was lacking and they described feelings of inadequacy when their physical energy or time was insufficient. They felt incapable as the patient's physical or mental persona metamorphosed or as serious symptoms developed that they could not control.

CONCLUSION: Next-of-kin caregivers and the patients must feel free to choose where palliative home care will be provided and that their choice at any time can be re-evaluated, due to insecurity or workload changes. When planning for palliative care, they should be informed that having only one caregiver reduces the chances of completing palliative care in the home.

Place, publisher, year, edition, pages
2008. Vol. 64, no 6, 578-586 p.
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-7323DOI: 10.1111/j.1365-2648.2008.04819.xPubMedID: 19120572OAI: oai:DiVA.org:hj-7323DiVA: diva2:133381
Available from: 2009-01-09 Created: 2009-01-09 Last updated: 2017-05-04Bibliographically approved
In thesis
1. Medical technology and its impact on palliative home care as a secure base experienced by patients, next-of-kin and district nurses
Open this publication in new window or tab >>Medical technology and its impact on palliative home care as a secure base experienced by patients, next-of-kin and district nurses
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Place, publisher, year, edition, pages
Jönköping: School of Health Sciences, 2011. 148 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 21
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-17026 (URN)
Public defence
2011-12-02, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2012-01-09 Created: 2012-01-09 Last updated: 2017-05-04Bibliographically approved

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