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- Beernaert, Kim, et al.
(författare)
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Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents : A Population-Based Survey Study
- 2017
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Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
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| 3. |
- Kreicbergs, Ulrika C, et al.
(författare)
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Parental grief after losing a child to cancer : impact of professional and social support on long-term outcomes.
- 2007
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Ingår i: Journal of Clinical Oncology. - 0732-183X .- 1527-7755. ; 25:22, s. 3307-3312
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: It is still uncertain whether or not parents can ever come to terms with the loss of a child and whether professional or social support facilitate the long-term grief process.METHODS: A Swedish population-based study, which sent an anonymous, mail-in questionnaire to parents who had lost a child to a malignancy 4 to 9 years earlier, gained the participation of 449 (80%) of 561 parents. Parents were asked whether, and to what extent, they had worked through their grief. Questions were also asked regarding those who provided parents with support. We examined candidate factors to determine their associations with greater likelihood of working through parental grief.RESULTS: Overall, most parents (74%) stated that they had worked through their grief "a lot" or "completely" at the time of the follow-up. Parents who had shared their problems with others during the child's illness (fathers: relative risk [RR], 3.0; 95% CI, 1.8 to 5.0; mothers: RR 1.9; 95% CI, 1.2 to 2.8) and who had access to psychological support during the last month of their child's life (fathers: RR 1.4; 95% CI, 1.0 to 1.8; mothers: RR 1.3; 95% CI, 1.1 to 1.6) were more likely to have worked through their grief. In cases where health care staff offered parents counseling during the child's last month, the parents were more likely to have worked through their grief (fathers: RR 1.5; 95% CI, 1.2 to 1.8; mothers; RR 1.2; 95% CI, 1.1 to 1.4).CONCLUSION: Most parents eventually work through the grief associated with losing a child to cancer. In the long term, sharing the emotional burden with others facilitates the grieving process.
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| 4. |
- Kreicbergs, Ulrika, et al.
(författare)
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Care-related distress: a nationwide study of parents who lost their child to cancer
- 2005
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Ingår i: J Clin Oncol. - 0732-183X .- 1527-7755. ; 23:36, s. 9162-71
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Tidskriftsartikel (refereegranskat)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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| 5. |
- Lannen, Patrizia K, et al.
(författare)
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Unresolved grief in a national sample of bereaved parents : Impaired mental and physical health 4 to 9 years later.
- 2008
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Ingår i: Journal of Clinical Oncology. - 0732-183X .- 1527-7755. ; 26:36, s. 5870-5876
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To assess unresolved parental grief, the associated long-term impact on mental and physical health, and health service use.PATIENTS AND METHODS: This anonymous, mail-in questionnaire study was performed as a population-based investigation in Sweden between August 2001 and October 2001. Four hundred forty-nine parents who lost a child as a result of cancer 4 to 9 years earlier completed the survey (response rate, 80%). One hundred ninety-one (43%) of the bereaved parents were fathers, and 251 (56%) were mothers. Bereaved parents were asked whether or not, and to what extent, they had worked through their grief. They were also asked about their physical and psychological well-being. For outcomes of interest, we report relative risk (RR) with 95% CIs as well as unadjusted odds ratios and adjusted odds ratios.RESULTS: Parents with unresolved grief reported significantly worsening psychological health (fathers: RR, 3.6; 95% CI, 2.0 to 6.4; mothers: RR, 2.9; 95% CI, 1.9 to 4.4) and physical health (fathers: RR, 2.8; 95% CI, 1.8 to 4.4; mothers: RR, 2.3; 95% CI, 1.6 to 3.3) compared with those who had worked through their grief. Fathers with unresolved grief also displayed a significantly higher risk of sleep difficulties (RR, 6.7; 95% CI, 2.5 to 17.8). Mothers, however, reported increased visits with physicians during the previous 5 years (RR, 1.7; 95% CI, 1.1 to 2.6) as well as a greater likelihood of taking sick leave when they had not worked through their grief (RR, 2.1; 95% CI, 1.2 to 3.5).CONCLUSION: Parents who have not worked through their grief are at increased risk of long-term mental and physical morbidity, increased health service use, and increased sick leave.
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| 6. |
- Pohlkamp, Lilian, et al.
(författare)
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Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
- 2020
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Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 38:2, s. 137-144
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about factors related to the child's illness trajectory that may contribute to prolonged grief in bereaved parents and about possible sex differences related to such factors. Therefore, we examined possible contributing factors associated with prolonged grief in cancer-bereaved mothers and fathers 1 to 5 years after their child died of cancer.METHODS: We studied data from a population-based nationwide survey, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years earlier, using univariable and multiple regression analyses to assess the associations between prolonged grief and possible contributing variables.RESULTS: The variables associated with lower levels of prolonged grief symptoms for mothers were being able to talk about feelings within the family (P = .00) and trusting that health care professionals made every possible effort to cure the child (P = .01). The statistically significantly associated variables for fathers were having said farewell to the deceased child in the way they wanted (P = .00) and feeling that they had received practical support from health care professionals during the child's illness trajectory (P = .01).CONCLUSION: We found factors during the illness of children with cancer that contributed to prolonged grief for parents; these were different for mothers and fathers. The results may have implications for design of family bereavement support within pediatric oncology care, including addressing the differing needs of mothers and fathers more effectively.
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| 7. |
- Tishelman, Carol, et al.
(författare)
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Are the most distressing concerns of patients with inoperable lung cancer adequatley assessed? A mixed-methods analysis
- 2010
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Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 28:11, s. 1942-1949
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Tidskriftsartikel (refereegranskat)abstract
- Purpose Standardized questionnaires for patient-reported outcomes are generally composed of specified predetermined items, although other areas may also cause patients distress. We therefore studied reports of what was most distressing for 343 patients with inoperable lung cancer (LC) at six time points during the first year postdiagnosis and how these concerns were assessed by three quality-of-life and symptom questionnaires.Patients and Methods Qualitative analysis of patients' responses to the question “What do you find most distressing at present?” generated 20 categories, with 17 under the dimensions of “bodily distress,” “life situation with LC,” and “iatrogenic distress.” Descriptive and inferential statistical analyses were conducted.Results The majority of statements reported as most distressing related to somatic and psychosocial problems, with 26% of patients reporting an overarching form of distress instead of specific problems at some time point. Twenty-seven percent reported some facet of their contact with the health care system as causing them most distress. While 55% to 59% of concerns reported as most distressing were clearly assessed by the European Organisation for Research and Treatment for Cancer Quality of Life Questionnaire Core-30 and Lung Cancer Module instruments, the Memorial Symptom Assessment Scale, and the modified Distress Screening Tool, iatrogenic distress is not specifically targeted by any of the three instruments examined.Conclusion Using this approach, several distressing issues were found to be commonly reported by this patient group but were not assessed by standardized questionnaires. This highlights the need to carefully consider choice of instrument in relation to study objectives and characteristics of the sample investigated and to consider complementary means of assessment in clinical practice.
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