title: Next of kin's experience of powerlessness and helplessness in palliative home care.
abstract: OBJECTIVE
  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.
  
  
  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.
  
  
  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.
authors.affiliation: Faculty of Health Sciences, Palliative Research Unit and Division of Geriatrics, Linköping University, 581 85 Linköping, Sweden. anna.milberg@lio.se
authors.forename: Anna
authors.initials: A
authors.lastname: Milberg
authors.forename: Peter
authors.initials: P
authors.lastname: Strang
authors.forename: Maria
authors.initials: M
authors.lastname: Jakobsson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology*; D005260:Female; D006699:Home Care Services; D006801:Humans; D007389:Internal-External Control; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010166:Palliative Care / Q000523:psychology*; D011209:Power, Psychological; D018454:Spouses / Q000523:psychology; D011795:Surveys and Questionnaires