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Supportive Care in Cancer

, Volume 12, Issue 2, pp 120–128 | Cite as

Next of kin’s experience of powerlessness and helplessness in palliative home care

  • Anna MilbergEmail author
  • Peter Strang
  • Maria Jakobsson
Original Article

Abstract

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 kin’s perception of the patient’s suffering, of the patient’s fading away and the next of kin’s 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 kin’s 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.

Keywords

Next of kin Palliative care Powerlessness Helplessness 

Notes

Acknowledgements

We thank the staff at the APHC teams in Östergötland for various kinds of help, Monica Ulriksson for typing the responses, and the Swedish Cancer Society and the County Council of Östergötland (The Committee for Medical Research and Development) for financial support.

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Copyright information

© Springer-Verlag 2004

Authors and Affiliations

  1. 1.Faculty of Health Sciences, Palliative Research Unit and Division of GeriatricsLinköping UniversityLinköpingSweden
  2. 2.Karolinska Institutet, FoUUStockholms SjukhemStockholmSweden
  3. 3.LAH Linnea-enhetenVrinnevisjukhusetNorrköpingSweden
  4. 4.Division of Geriatrics, House 011University HospitalLinköpingSweden

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