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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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- Valdimarsdottir, U., et al.
(author)
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Need for and access to bereavement support after loss of a husband to urologic cancers: a nationwide follow-up of Swedish widows
- 2005
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In: Scand J Urol Nephrol. - 0036-5599. ; 39:4, s. 271-6
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Journal article (peer-reviewed)abstract
- OBJECTIVE: Widowhood imposes difficult psychological, social and practical challenges. We investigated the prevalence and predictors of access to bereavement interventions during the first 6 months after the loss of a husband/male partner to prostate or urinary bladder cancer. MATERIAL AND METHODS: All women (n = 506) aged < 80 years living in Sweden who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were asked to answer an anonymous postal questionnaire 2-4 years after their loss. RESULTS: Thirty percent of the widows stated that they would not have needed psychological support by caregivers during the first 6 months of bereavement. Two-thirds of the others (162/242) (those who did not state that they had no need of support) did not have any access to psychological support, 10% (25/242) had little access, 11% (27/242) had moderate access and 12% (28/242) had a large amount of access to psychological support. Similar figures were observed for other bereavement interventions, such as information, economic counselling and support groups. Emotional relations during the last months prior to bereavement, intensity of faith, education, prior mental health problems and a diagnosis of prostate cancer were all positively correlated with access to psychological support by caregivers, whereas previously identified risk factors for excess morbidity in widowhood were not. CONCLUSIONS: A large majority of Swedish widows who lost their husband to urologic cancers in 1995 or 1996 indicated a need for psychological support, information and economic counselling. This need was not met by caregivers and help was not aimed at important groups at risk of morbidity.
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- Ylitalo, Nathalie, et al.
(author)
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Guilt after the loss of a husband to cancer: is there a relation with the health care provided?
- 2008
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In: Acta Oncology. - : Informa UK Limited. - 0284-186X .- 1651-226X. ; 47:5, s. 870-878
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Journal article (peer-reviewed)abstract
- Background. Feelings of guilt are common after bereavement. We investigated whether feelings of guilt after the loss of a husband to cancer are associated with the health care provided at the time close to and at the moment of death. Materials and methods. The study population consisted of 506 widows of men who died of prostate cancer in 1995 or of urinary bladder cancer in 1995 or 1996 at the ages 45–74 years. We collected information on the received health care at the time of the husband's death from the widows, through a postal questionnaire. Results. Widows who perceived that their husbands did not get enough pain relief had an increased relative risk of 1.7 (95% CI 1.1–2.8), for guilt feelings, compared to widows who felt that their husbands had adequate pain relief. If a widow considered her husband being exposed to less satisfactory care or treatment, she had an almost two-fold increased relative risk, 1.9 (95% CI 1.2–3.1), for guilt feelings after the husband's death, compared to a widow who thought that satisfactory care or treatment was provided. Discussion. Feelings of guilt after bereavement may occur in response to the perception of inadequate health care during the last months and at the actual moment of death of the significant other.
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