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Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective

Published online by Cambridge University Press:  15 August 2011

Anna Milberg  and
Peter Strang
Anna Milberg*
Affiliation:
Department of Social and Welfare Studies, Linköping University, LAH/Unit of Palliative Care, University Hospital, Linköping, and Palliative Education and Research Centre in the County of Östergötland, Östergötland, Sweden
Peter Strang
Affiliation:
Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden
*
Address correspondence and reprint requests to: Anna Milberg, LAH Öst, Vrinnevisjukhuset, 601 82 Norrköping, Sweden. E-mail: anna.milberg@isv.liu.se
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Abstract

Objective:

Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.

Method:

Both family members during ongoing APHC and family members 3–9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.

Results:

Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.

Significance of results:

The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

Keywords

ExistentialismPowerlessnessHelplessnessFamilyPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 3 , September 2011 , pp. 251 - 262
Copyright
Copyright © Cambridge University Press 2011

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