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- Af Sandeberg, M, et al.
(author)
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Health-related quality of life relates to school attendance in children on treatment for cancer
- 2008
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In: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1043-4542. ; 25:5, s. 265-274
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Journal article (peer-reviewed)abstract
- The aims of this study are to follow health-related quality of life (HRQOL), school attendance, and social interaction with friends in children with cancer and to explore potential relationships between HRQOL and school attendance. The study also describes self-reported reasons for not attending school and not meeting friends. During a 2-year period, all schoolchildren in Sweden starting treatment for cancer were invited to participate in the study. Participants (N = 101) were assessed 3 times during the first 5 months of treatment using 2 questionnaires: DISABKIDS Chronic Generic Module (DCGM-37) and a study-specific questionnaire. The results indicate a diminished HRQOL that remained stable over the study period, with girls rating worse HRQOL compared with boys. School attendance significantly increased over time, and approximately half of the children attended school 5 months after start of treatment. Self-reported HRQOL was positively correlated to days of school attendance. The results emphasize the importance of psychosocial care and nursing for children diagnosed with cancer, especially for girls. Research to further explore gender differences in HRQOL among children diagnosed for cancer is recommended.
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2. |
- Anclair, Malin, et al.
(author)
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Parental fears following their child's brain tumor diagnosis and treatment.
- 2009
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In: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 26:2, s. 68-74
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Journal article (peer-reviewed)abstract
- The objective of this study is to portray the illness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their child's brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treatment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of individualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.
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3. |
- Björk, Maria, et al.
(author)
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Needs of young children with cancer during their initial hospitalization : An observational study
- 2006
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In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 23:4, s. 210-219
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Journal article (peer-reviewed)abstract
- The aim of this study was to describe young (under the age of 7) children's needs as expressed by their behavior, body language and verbal expression through observations during their initial hospitalization after being diagnosed with cancer. Twelve children under the age of seven were followed during 26 hours with non-participant unstructured observations. Field notes were written after each observation and transcribed into a narrative text, which was analyzed by content analysis at both manifest and latent level. Five themes were identified, of which "need to have the parent close by" was the most prominent. The other themes were "need to play and feel joy," "need for participation in care and treatment," "need for a good relationship with the staff," and "need for physical and emotional satisfaction." The results indicate that the children needed their parents and the parents' presence helped the children to express other needs. Professionals need to support the child and his or her parents so that the parents in their turn can support and alleviate their child's hospitalization and cancer treatment. © 2006 by Association of Pediatric Oncology Nurses.
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4. |
- Björk, Maria, et al.
(author)
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Striving to survive : Families' lived experiences when a child is diagnosed with cancer
- 2005
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In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 22:5, s. 265-275
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Journal article (peer-reviewed)abstract
- When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family. © 2005 by Association of Pediatric Oncology Nurses.
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5. |
- Nolbris, Margaretha, 1956, et al.
(author)
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Siblings' needs and issues when a brother or sister dies of cancer.
- 2005
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In: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1043-4542. ; 22:4, s. 227-33
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Journal article (peer-reviewed)abstract
- To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.
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6. |
- Pergert, Pernilla, et al.
(author)
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Obstacles to transcultural caring relationships : experiences of health care staff in pediatric oncology.
- 2007
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In: J Pediatr Oncol Nurs. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 24:6, s. 314-28
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Journal article (other academic/artistic)abstract
- Obstacles to transcultural caring relationships: experiences of health care staff in pediatric oncology.Pergert P, Ekblad S, Enskär K, Björk O.Childhood Cancer Care Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital/Solna, Stockholm, Sweden. Stockholm, Sweden. pernilla.pergert@ki.seThis qualitative study explores the caring situation of families with an immigrant background within the context of pediatric oncology care from the perspective of health care staff. Five focus group interviews and 5 complementary individual interviews were conducted after purposive and theoretical sampling, respectively. Grounded theory methodology revealed that obstacles to transcultural caring relationships are a main concern of the health care staff. These obstacles are divided into 4 main categories: linguistic, cultural and religious, social, and organizational. When health care staff fail to recognize obstacles to transcultural caring relationships, the result is inequity in care of families with an immigrant background. Equity in care for all does not mean identical treatment but, rather, care adjusted to the needs of the individual family regardless of background.PMID: 18003591 [PubMed - indexed for MEDLINE]
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