Next of kin’s experience of powerlessness and helplessness in palliative home care
2004 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 12, no 2, 120-128 p.Article in journal (Refereed) Published
Goals of work Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications.
Patients and methods The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3–9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis.
Main results Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kins perception of the patients suffering, of the patients fading away and the next of kins own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness.
Conclusions The main findings provide tools for the practitioner to identify situations contributing to next of kins sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans search for action.
Place, publisher, year, edition, pages
2004. Vol. 12, no 2, 120-128 p.
Medical and Health Sciences
IdentifiersURN: urn:nbn:se:liu:diva-23726DOI: 10.1007/s00520-003-0569-yLocal ID: 3233OAI: oai:DiVA.org:liu-23726DiVA: diva2:244041