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- Eilegard, A, et al.
(författare)
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To loose a sister or brother to cancer
- 2007
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Ingår i: PEDIATRIC BLOOD & CANCER. - 1545-5009. ; 49:4, s. 508-508
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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- Surkan, P. J., et al.
(författare)
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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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Ingår i: J Palliat Med. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 9:2, s. 317-31
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Tidskriftsartikel (refereegranskat)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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- Alvariza, A., et al.
(författare)
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Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention
- 2020
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
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- Hunt, H., et al.
(författare)
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When death appears best for the child with severe malignancy: a nationwide parental follow-up
- 2006
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:6, s. 567-77
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Tidskriftsartikel (refereegranskat)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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