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- Surkan, P. J., et al.
(author)
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Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up
- 2006
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In: J Palliat Med. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 9:2, s. 317-31
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Journal article (peer-reviewed)abstract
- BACKGROUND: Parental feelings of guilt can be a serious problem after the death of a child to a malignancy. This study identified predictors of feelings of guilt in parents during the year after a child's death. METHODS: The Swedish Cause of Death Register and Swedish Cancer Register were used to identify all parents in Sweden who had a child who died of a malignancy between 1992-1997. RESULTS: Among parents not reporting recent depression, those who were not confident that their child would immediately receive help from the staff in the hospital while he or she was sick with a malignancy (compared to those who felt partly or entirely sure, relative risk [RR] 4.0; 95% confidence interval [CI] 2.1-7.6), were at increased risk for reporting daily or weekly feelings of guilt in the year after the child's death. Parents who perceived that the staff in the pediatric cancer ward were incompetent were at increased risk (compared to parents reporting partial or total competence, RR 3.7; 95% CI 1.6-8.6). Compared to parents reporting that their children had moderate or much access, those who felt their children had little or no access to pain relief, dietary advice, anxiety relief, and relief of other psychological symptoms beside anxiety were at more than two times greater risk for reporting feelings of guilt. CONCLUSIONS: Bereaved parents' perceptions of inadequate health care were associated with subsequent feelings of guilt during the year following their child's death due to a malignancy.
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- Hauksdottir, A., et al.
(author)
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Towards better measurements in bereavement research: order of questions and assessed psychological morbidity
- 2006
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In: Palliat Med. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:1, s. 11-6
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Journal article (peer-reviewed)abstract
- The aim of this study was to determine if the order of questions in a study on men who have lost a wife in cancer affects self-assessed measures of psychological morbidity. Data were collected from 76 men who had lost a wife owing to cancer in the breast, ovary or colon in 1999. They were randomly allocated to one of two questionnaires with identical content but varying design. One version began with questions about the wife's disease and ended with the respondent's current wellbeing (morbidity-last group). The other version had a reversed order (morbidity-first group). Results showed that the design of the questionnaire affected self-assessed psychological morbidity; all relative risks for these measures were above 1.0 in the morbidity-last group. The highest relative risk was obtained for anxiety (as measured by HADS), 3.4 (0.8-15.0), and depression (as measured by a visual-digital scale), 3.1 (1.2-8.5). Psychological morbidity is assessed as higher when questions appear in the end, rather than the beginning, of a bereavement-related questionnaire. In order to avoid a detrimental bias in a study on bereavement, psychological morbidity is probably best measured first in such a questionnaire.
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- Hunt, H., et al.
(author)
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When death appears best for the child with severe malignancy: a nationwide parental follow-up
- 2006
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:6, s. 567-77
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Journal article (peer-reviewed)abstract
- BACKGROUND: Loss of a child to malignancy is associated with long-term morbidity among surviving parents. This study aims to identify particular sources of stress among parents of children with severe malignancy. METHODS: We attempted to contact all parents in Sweden who lost a child to cancer between 1992 and 1997. Some 449 parents answered an anonymous questionnaire, including a question regarding whether they ever thought that death would be best for the child with severe malignancy. RESULTS: Mothers whose children were unable to communicate during their last week of life were more likely to think that death would be best for the child (relative risk (RR): 1.6; 95% confidence interval (CI): 1.2-2.1). Fathers whose children faced six years or more with malignancy were more likely to think that death would be best for their child (RR: 2.1; 95% CI: 1.3-3.5). CONCLUSIONS: The inability of the child with severe malignancy to communicate increases the likelihood of mothers thinking that death would be best for the child, while longer duration of the child's illness increases the occurrence of this thought among fathers.
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- Kreicbergs, Ulrika, et al.
(author)
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Care-related distress: a nationwide study of parents who lost their child to cancer
- 2005
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In: J Clin Oncol. - 0732-183X .- 1527-7755. ; 23:36, s. 9162-71
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Journal article (peer-reviewed)abstract
- PURPOSE: Palliative care is an important part of cancer treatment. However, little is known about how care-related factors affect bereaved intimates in a long-term perspective. We conducted a population-based, nationwide study addressing this issue, focusing on potential care-related stressors in parents losing a child to cancer. METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer in 1992 to 1997. The parents were asked, through an anonymous postal questionnaire, about their experience of the care given and to what extent these experiences still affect them today. RESULTS: Information was supplied by 449 (80%) of 561 eligible parents. Among 196 parents of children whose pain could not be relieved, 111 (57%) were still affected by it 4 to 9 years after bereavement. Among 138 parents reporting that the child had a difficult moment of death, 78 (57%) were still affected by it at follow-up. The probability of parents reporting that their child had a difficult moment of death was increased (relative risk = 1.4; 95% CI, 1.0 to 1.8) if staff were not present at the moment of death. Ten percent of the parents (25 of 251 parents) were not satisfied with the care given during the last month at a pediatric hematology/oncology center; the corresponding figure for care at other hospitals was 20% (33 of 168 parents; P = .0163). CONCLUSION: Physical pain and the moment of death are two important issues to address in end-of-life care of children with cancer in trying to reduce long-term distress in bereaved parents.
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