| 1. |
- Skolin, I., et al.
(författare)
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Percutaneous endoscopic gastrostomy in children with malignant disease
- 2002
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Ingår i: Journal of Pediatric Oncology Nursing. - 1043-4542 .- 1532-8457. ; 19:5, s. 154-163
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Tidskriftsartikel (refereegranskat)abstract
- The objective of the study was to assess both the possible complications of percutaneous endoscopic gastrostomy (PEG) in pediatric cancer patients and its effect on weight development. The medical records of 18 children with a median age of 2.5 years (range, 0.5-14.2 years) were reviewed. The diagnoses were leukemia, central nervous system tumors, solid tumors, and lymphoma. The indications for PEG were anticipated therapy-related nutritional problems and inadequate food intake, weight loss, swallowing problems in relation to paresis of the pharynx, and relapse of the disease. Ten children received a PEG at treatment start, and eight children received it at a median time of 3.4 months (range, 0.9-27.4 months) after treatment start. The median duration of having a PEG in place was 12.3 months (range, 1.2-24.0 months). At admission the median weight for age expressed as standard deviation (SD) was -0.11 (range, -2.78-2.68). There was a significant (p =.005) decrease in the median SD from admission until PEG installation. There was also a significant increase in the median SD from the start of PEG use until 1 (p =.04) and 2 (p =.039) months after start. The most common complications were episodes of inflammation of the PEG site, which were successfully treated with topically or orally administered antibiotics, and episodes of infection, which required intravenously administered antibiotics. Taking into consideration the medical condition of the children in the study group and the considerable length of time with a PEG in place, we believe that nutrition via PEG in children with cancer has several advantages and is rarely associated with other than minor complications. Copyright 2002 by Association of Pediatric Oncology Nurses
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| 2. |
- Af Sandeberg, M, et al.
(författare)
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Health-related quality of life relates to school attendance in children on treatment for cancer
- 2008
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Ingår i: 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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Tidskriftsartikel (refereegranskat)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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| 3. |
- Anclair, Malin, et al.
(författare)
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Parental fears following their child's brain tumor diagnosis and treatment.
- 2009
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Ingår i: 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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Tidskriftsartikel (refereegranskat)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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| 4. |
- Angström-Brännström, Charlotte, et al.
(författare)
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Children undergoing cancer treatment describe their experiences of comfort in interviews and drawings.
- 2014
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 31:3, s. 135-46
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Tidskriftsartikel (refereegranskat)abstract
- Children with cancer often undergo a long course of treatment, described as painful, and associated with feelings of discomfort and need of comfort. The aim of this descriptive interview study was to investigate how children, aged 3 to 9 years, undergoing cancer treatment describe their experience of comfort. The children were interviewed and asked to make drawings. Data were content analyzed and four themes were constructed-enduring discomfort, expressing discomfort, finding comfort, and comforting others. The findings show that the children endured discomfort during treatment, and were sometimes able to express it. They found comfort especially from their family and from hospital staff. The children also described that they comforted family members. The findings are in accordance with previous research about children's and adults' accounts of comfort. An incidental finding is that parents were surprised when they listened to the children's accounts of their experience of discomfort and comfort and achieved a better understanding of their children.
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| 5. |
- Björk, Maria, et al.
(författare)
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Needs of young children with cancer during their initial hospitalization : An observational study
- 2006
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 23:4, s. 210-219
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Tidskriftsartikel (refereegranskat)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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| 6. |
- Björk, Maria, et al.
(författare)
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Striving to survive : Families' lived experiences when a child is diagnosed with cancer
- 2005
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 22:5, s. 265-275
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Tidskriftsartikel (refereegranskat)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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| 7. |
- Darcy, Laura, 1967-, et al.
(författare)
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Following Young Children's Health and Functioning in Everyday Life Through Their Cancer Trajectory
- 2016
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Ingår i: Journal of Pediatric Oncology Nursing. - Thousand Oaks, CA : Sage Publications. - 1043-4542 .- 1532-8457. ; 33:3, s. 173-189
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Tidskriftsartikel (refereegranskat)abstract
- Background: Knowledge of living with childhood cancer, through the trajectory, is sparse. Aim: The aim of this study was to follow young children's health and functioning in everyday life through their cancer trajectory. Methods: Data were gathered longitudinally from a group of 13 young children and their parents connected to a pediatric oncology unit in Sweden. The International Classification of Functioning, Disability and Health for Children and Youth structure was used to identify difficulties in health and functioning in everyday life, in interview and questionnaire data. Descriptive statistical analysis was performed to show patterns of difficulty over a 3-year period from diagnosis. Results: Difficulties experienced by children declined and changed over time. An increase in difficulties with personal interactions with others and access to and support from health care professionals was seen 2 to 3 years after diagnosis and start of treatment. Similar patterns are seen within individual children's trajectories in relation to diagnosis but individual patterns were seen for each child. Conclusions and Clinical Implications: Health care professionals need to plan for ongoing contact with school services and information and support pathways, beyond the treatment period. A person-centered philosophy of care is required throughout the cancer trajectory.
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| 8. |
- Eilertsen, M. E. B., et al.
(författare)
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Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up
- 2013
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 301-310
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Tidskriftsartikel (refereegranskat)abstract
- Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
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| 9. |
- Einberg, Eva-Lena, 1965-, et al.
(författare)
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Friendship Relations From the Perspective of Children With Experience of Cancer Treatment : A Focus Group Study With a Salutogenic Approach
- 2015
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Ingår i: Journal of Pediatric Oncology Nursing. - Thousand Oaks : Sage Publications. - 1043-4542 .- 1532-8457. ; 32:3, s. 153-164
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Tidskriftsartikel (refereegranskat)abstract
- Friendships are significant to child development and health but diseases such as cancer can interrupt the contact with friends. The purpose of this study was to describe perceptions of friendship from the perspective of children undergoing cancer treatment, in order to build knowledge that can be used in a health promotion intervention for these children. Fifteen children between 8 and 12 years of age participated in focus groups, where a mixture of informative and creative techniques were used. The focus group discussions were analyzed using qualitative content analysis. The analysis resulted in three generic categories, “Common interests and experiences,” “Mutual empathic actions.” and “Mutual trust and understanding,” incorporating seven subcategories. Based on children’s descriptions from a salutogenic perspective, friendship emerged as An equal and mutual commitment that evolves over time and with interactions face-to-face and digitally, a child perspective on friendship should be central to the development of health promotion interventions designed to support friendship relations of children treated for cancer. © 2014 by Association of Pediatric Hematology/Oncology Nurses
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| 10. |
- Enskär, Karin
(författare)
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Being an Expert Nurse in Pediatric Oncology Care : Nurses' Descriptions in Narratives
- 2012
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 29:3, s. 151-160
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Tidskriftsartikel (refereegranskat)abstract
- Pediatric oncology has become a highly specialized area, and the transition from novice nurse to expert can be complicated. The aim of this study was to describe the perceptions of nurses in pediatric oncology regarding the role of an expert nurse in pediatric oncology. Nurses (n = 66) working in pediatric oncology participated by writing their narratives. The data were analyzed by means of content analysis, and 3 categories were found: an expert has confidence in his or her knowledge, an expert provides high-quality care, and an expert is given possibilities for professional growth. It can be concluded that when nurses are given possibilities for continuous education and reflection, and have a feeling of satisfaction at being able to fulfill a child and his or her family's needs, this enhances their possibility to become experts and maintain expert competence.
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| 11. |
- Enskär, Karin, et al.
(författare)
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Experiences of Young Children With Cancer and Their Parents With Nurses' Caring Practices During the Cancer Trajectory.
- 2020
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 37:1, s. 21-34
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Tidskriftsartikel (refereegranskat)abstract
- Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.
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| 12. |
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| 13. |
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| 14. |
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| 15. |
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| 16. |
- Frygner-Holm, Sara, et al.
(författare)
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Pretend Play as an Intervention for Children With Cancer : A Feasibility Study
- 2020
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 37:1, s. 65-75
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Tidskriftsartikel (refereegranskat)abstract
- Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.
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| 17. |
- Granhagen Jungner, Johanna, et al.
(författare)
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Creating a Meeting Point of Understanding : Interpreters' Experiences in Swedish Childhood Cancer Care
- 2016
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:2, s. 137-145
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Children and families with a foreign background and limited Swedish proficiency have to communicate through interpreters in childhood cancer care centers in Sweden. Interpreter-mediated events deal with many difficulties that potentially hinder the transfer of information. The purpose of our study was to explore interpreters' experiences of interpreting between health care staff and limited Swedish proficiency patients/families in childhood cancer care.DESIGN: Using purposive samples, we interviewed 11 interpreters individually. The interviews were analyzed using qualitative content analysis.FINDINGS: Analyses of the data resulted in the main theme of creating a meeting point of understanding, constructed from 3 subthemes: balancing between cultures, bridging the gaps of knowledge, and balancing between compassion and professionalism.DISCUSSION: Our result shows that in order to create a sustainable meeting point of understanding, it is necessary to explain both the context and cultural differences. These results suggest that the responsibility for information transfer lies with both the health care profession and the interpreters. Tools have to be developed for both parties to contribute to creating the meeting point of understanding.
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| 18. |
- Gårdling, Jenny, et al.
(författare)
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Parents' Lived Experiences During Their Children's Radiotherapy
- 2017
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:2, s. 140-147
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The aim of radiotherapy is to provide a cure and/or symptomatic relief for children with cancer. Treatment is delivered on a daily basis, 5 days per week, over the course of 5 to 35 days. Many parents find that leaving their children alone during treatment and exposing them to radiation is a challenging experience. To gain an understanding of parents' lived experiences, 10 parents were asked to keep a diary while their children underwent radiotherapy.METHODS: A descriptive inductive design with a hermeneutic-phenomenological approach was chosen to analyze the diaries. The parents were asked to write down their lived experiences while their children underwent radiotherapy. Daily notes, both short and long, were desirable.FINDINGS: The parents described radiotherapy as a balancing act involving a constant attempt to maintain a balance between coercing and protecting their children in order to improve their children's chances of survival. Meanwhile, the parents themselves were struggling with their own despair and feelings of powerlessness. While protecting their children, they experienced a sense of hope and felt that they had gained control.CONCLUSION: Parents' daily written reflections are important for clinical practice and provide vital knowledge. Parents need support when focusing on coercing and protecting their children and help with information and routines that enable them gain control.
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| 19. |
- Hedström, Mariann, et al.
(författare)
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Distressing events for children and adolescents with cancer : Child, parent, and nurse perceptions
- 2003
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 20:3, s. 120-132
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Tidskriftsartikel (refereegranskat)abstract
- Distressing events for children with cancer (N = 121), 0 to 19 years of age, were investigated. Data were gathered through interviews with 50 children, 65 parents, and 118 nurses. Each participant was asked: "Has there been any especially distressing event for you/your child/the child with regard to disease and treatment?" Data were analyzed by content analysis. The categories that emerged from the analysis were grouped into a physical and an emotional dimension. The most frequently mentioned aspects of distress referred to the physical dimension: pain resulting from diagnostic procedures and treatments, nausea, and fatigue. The most frequently mentioned physical aspect of distress was, for children 0 to 3, 4 to 7, and 8 to 12 years of age, pain resulting from diagnostic procedures and treatments, and for children > or =13 years of age, nausea. The most frequently mentioned aspects of distress referred to the emotional dimension were categorized as confinement, feeling of alienation, and worry before medical procedures. The most frequently mentioned emotional aspect of distress was, for children 0 to 3 years of age, confinement; 4 to 7 years of age, feeling of alienation; 8 to 12 years of age, worry about death; and > or =13 years of age, changed appearance. For children 0 to 3, 4 to 7, and > or =13 years of age, aspects of distress of a physical character were mentioned most frequently. For children 8 to 12 years of age, aspects of distress of an emotional character were mentioned most frequently.
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| 20. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Sibling Supporters’ Experiences of Giving Support to Siblings Who Have a Brother or a Sister With Cancer
- 2017
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:2, s. 83-89
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Tidskriftsartikel (refereegranskat)abstract
- Siblings of a child with a life-threatening disease, such as cancer, have a right to measures that promote their health and welfare. Siblings may find it hard to understand what is happening to the sick child with cancer and why he or she reacts as he or she does. The aim of the study was to explore sibling supporters’ thoughts about the experiences they had in providing support for siblings with a brother or a sister with a life-threatening disease such as cancer. All the 12 sibling supporters currently working in Sweden participated in a qualitative, descriptive study from which 5 categories emerged, showing that the sibling supporters supported siblings from diagnosis until possible death. They enabled siblings who were in the same situation to meet each other and arranged activities suited to their ages, as well as offering an encouraging environment. To help the siblings, the sibling supporters found it necessary to interact with both the parents and the ward staff. The sibling supporters felt that their support was important and necessary in helping siblings promote their own health both when the sick child was alive and also after his or her death. The experience of the sibling supporters was that they listened to the siblings’ stories and met them when they were in their crisis. The study confirms that sibling supporters should be a part of the health care team that treat and support the family when a child has cancer.
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| 21. |
- Jervaeus, A, et al.
(författare)
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Survivors of childhood cancer report high levels of independence five years after diagnosis
- 2014
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Ingår i: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1532-8457. ; 31:5, s. 245-251
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.
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| 22. |
- Johansson Sundler, Annelie, et al.
(författare)
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Living an Everyday Life Through a Child's Cancer Trajectory : Families' Lived Experiences 7 Years After Diagnosis
- 2013
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 293-300
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to illuminate the lived experiences of families where a child had survived 7 years from a diagnosis of childhood cancer. This article describes one part of an inductive and longitudinal research project that included 17 families. Four families whose child was diagnosed with cancer 7 years previously were interviewed using a hermeneutical phenomenological approach. The families lived experience was described in one essential theme, "Living an everyday life through the child's cancer trajectory," further illuminated in 3 related themes: "Leaving the disease behind yet feeling its presence," "Being the same yet always different," and "Feeling stronger yet vulnerable." The results suggest that family members feel vulnerable even if a long period of time has passed since completion of treatment. To varied degrees they still may need support. When moving forward in life, the family members are helped if they can reconcile their memories and experiences derived from the childhood cancer trajectory.
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| 23. |
- Lönnerblad, Malin, et al.
(författare)
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Affected Aspects Regarding Literacy and Numeracy in Children Treated for Brain Tumors
- 2017
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:6, s. 397-405
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to investigate the test results of reading speed, reading comprehension, word comprehension, spelling, basic arithmetic skills, and number sense (intuitive understanding of numbers) by children treated for brain tumors. This is a retrospective study based on medical records, including standardized academic tests. In the years of 2010 to 2014, all children in the area of Stockholm between 7 and 18 years (IQ <70) who had no major linguistic or motor difficulties after they had undergone treatment for brain tumors were offered a special education assessment one year after treatment, at school start, or the year before a transition from one stage to another. Our results indicate that children treated for a brain tumor are at risk of having difficulties in spelling, reading speed, and arithmetic and that the test performance may decline over years in arithmetic and spelling. Children diagnosed at age 0 to 6 years may need extra tutoring at school start, especially in basic arithmetic skills. In both reading and mathematics, many children perform better on tests focused on understanding than on tests focused on speed. Continuous special needs assessments including different aspects of literacy and numeracy, are important for understanding each child's specific needs.
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| 24. |
- Lövgren, Malin, et al.
(författare)
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Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
- 2016
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.
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| 25. |
- Nguyen, Thanh Nhan, et al.
(författare)
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Music therapy to reduce pain and anxiety in children with cancer undergoing lumbar puncture: a randomized clinical trial.
- 2010
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Ingår i: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1532-8457 .- 1043-4542. ; 27:3, s. 146-55
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Tidskriftsartikel (refereegranskat)abstract
- A nonpharmacological method can be an alternative or complement to analgesics.The aim of this study was to evaluate if music medicine influences pain and anxiety in children undergoing lumbar punctures. A randomized clinical trial was used in 40 children (aged 7-12 years) with leukemia, followed by interviews in 20 of these participants. The participants were randomly assigned to a music group (n = 20) or control group (n = 20). The primary outcome was pain scores and the secondary was heart rate, blood pressure, respiratory rate, and oxygen saturation measured before, during, and after the procedure. Anxiety scores were measured before and after the procedure. Interviews with open-ended questions were conducted in conjunction with the completed procedures. The results showed lower pain scores and heart and respiratory rates in the music group during and after the lumbar puncture. The anxiety scores were lower in the music group both before and after the procedure. The findings from the interviews confirmed the quantity results through descriptions of a positive experience by the children, including less pain and fear.
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| 26. |
- Nolbris, Margaretha, 1956, et al.
(författare)
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Siblings' needs and issues when a brother or sister dies of cancer.
- 2005
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Ingår i: 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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Tidskriftsartikel (refereegranskat)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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| 27. |
- Pergert, Pernilla, et al.
(författare)
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Obstacles to transcultural caring relationships : experiences of health care staff in pediatric oncology.
- 2007
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Ingår i: J Pediatr Oncol Nurs. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 24:6, s. 314-28
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)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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| 28. |
- Ringnér, Anders, 1975-, et al.
(författare)
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Parental experiences of information within pediatric oncology
- 2011
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 28:4, s. 244-251
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Tidskriftsartikel (refereegranskat)abstract
- Parents of children with cancer use information to create knowledge about their child's disease. Information can help parents reduce chaos and create a feeling of control, but there are often obstacles to its acquisition, which has been described as similar to learning a new language. The purpose of this study was to describe parents' experiences of acquiring and using information to create knowledge about their child's cancer during the course of the illness. The authors used qualitative content analysis on data from focus groups and individual interviews with 14 parents of children with cancer. Two themes were constructed: (a) feeling acknowledged as a person of significance included feeling safe and secure in spite of uncertainty, having one's hopes supported, and getting relief from other families' experiences; (b) feeling like an unwelcome guest included feeling abandoned at important milestones, feeling forced to nag for information, and feeling burdened by the obligation to inform others. Parents may need extra attention at important milestones such as treatment cessation, with information meetings grounded in the parents' own needs.
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| 29. |
- Ringnér, Anders, 1975-, et al.
(författare)
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Professional caregivers' perceptions of providing information to parents of children with cancer
- 2011
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 28:1, s. 34-42
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Tidskriftsartikel (refereegranskat)abstract
- Information has been described as a critical part of the care for parents of children with cancer, but not much is known about how caregivers makes decisions about informing parents. This study aims to illuminate professional caregivers' perceptions of providing information to parents of children with cancer. Twenty caregivers at a Swedish pediatric oncology ward participated in four focus group interviews. The interviews were transcribed verbatim and subjected to qualitative content analysis. Two themes were found: Matching the amount of information to the parents' needs concerned situations where the amount of information provided according to the caregivers' assessment is deemed too small, appropriate, or too large. Navigating through a vague structure dealt with a disrupted setting, unclear responsibilities within the team, difficult timing, unintelligible information, and underused tools for communication. Implications for intervention development are discussed.
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| 30. |
- Skolin, I., et al.
(författare)
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Parents' perception of their child's food intake after the start of chemotherapy
- 2001
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 18:3, s. 124-136
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Tidskriftsartikel (refereegranskat)abstract
- Adequate nutrition is an important part of supportive therapy for the pediatric cancer patient. The aim of this study was to assess parents' perceptions of their child's eating pattern after onset of chemotherapy and the strategies they used to cope when eating problems arose. A semistructured interview was performed with parents of 11 consecutively admitted children. The results showed that parents have a realistic perception of their child's food intake and that they are able to recognize reasons for poor food intake that may be unknown to the staff. The individual responses of the parents and the mechanisms of coping were unique for each individual. The responsibility of getting the child to eat was distressing for many parents. The study indicates that parents need continuous support to serve an optimal role in the nutritional care of their child. Copyright 2001 by Association of Pediatric Oncology Nurses
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| 31. |
- Winterling, J, et al.
(författare)
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Perceptions of School Among Childhood Cancer Survivors: A Comparison With Peers
- 2015
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Ingår i: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1532-8457. ; 32:4, s. 201-208
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors. It is suggested that survivors perceive school overall as positive and do not have more problems reaching educational goals than their peers. However, quality of relationships with friends needs further investigation.
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| 32. |
- Ångström-Brännström, Charlotte, et al.
(författare)
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Parents’ experiences and responses to an intervention for psychological preparation of children and families during the child’s radiotherapy
- 2018
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Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 35:2, s. 132-148
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to evaluate parents’ experiences and responses to a systematic intervention for psychological preparation of children and families during the child’s radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included—n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child’s RT.
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| 33. |
- Ångström-Brännström, Charlotte, 1957-, et al.
(författare)
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Parents' experiences of what comforts them when their child is suffering from cancer
- 2010
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Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 27:5, s. 266-275
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to describe parents' narratives concerning what they find comforting when they have a child suffering from cancer. Interviews were conducted with 9 parents--8 mothers and 1 father--of children aged 3 to 9 years who were admitted to a pediatric oncology ward and had undergone their first treatment. The findings showed that the parents derived comfort from being close to their child, perceiving the child's strength, feeling at home in the ward, being a family and being at home, and receiving support from their social network. Comfort experienced in communion with the child and others became important and helped the parents build a new normality perceived as being at home in life despite all their difficulties. Within the frame of communion, the parents seemed to experience moments of hope for their child's recovery and survival.
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| 34. |
- Elustondo, Diego, et al.
(författare)
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Optimum operating conditions in drying foodstuffs with superheated steam
- 2002
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Ingår i: Drying Technology. - 0737-3937 .- 1532-2300. ; 20:2, s. 381-402
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Tidskriftsartikel (refereegranskat)abstract
- It is inferred from experimental data that in drying foodstuffs with superheated steam, the initial drying rate has a direct effect on the rate at which the overall drying takes place. That is, the faster the initial drying rate, the shorter the overall drying time. This criterion is very convenient because at the beginning, water moistens the sample external surface so evaporation does not depend on internal sample characteristics, but only on external convective heat and mass transfer rates. Mass and energy balance equations are solved and the result converted into a general initial drying rate equation, in which all dryer characteristics are grouped into one dimensionless parameter. The initial drying rate equation is mathematically maximized and the optimum working conditions determined. The result shows that initial drying rate always increase with increases of either the superheated steam temperature or velocity, but once these two variables are fixed, there exists at least one "optimum" pressure at which the initial drying rate is a maximum. Finally, the initial drying rate and optimum condition equations are applied to three model dryers, a dryer for a flat sheet, a fixed bed dryer and a rotary dryer. In each case, numeric values are computed and plotted as drying rate versus pressure curves, in which the optimum drying rate is also included. Also presented is a chart to compare the optimum pressures as functions of temperature and steam velocity for the three dryers.
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| 35. |
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| 36. |
- Broholm, Christa, et al.
(författare)
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Epigenome- and Transcriptome-wide Changes in Muscle Stem Cells from Low Birth Weight Men
- 2020
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Ingår i: Endocrine Research. - : Informa UK Limited. - 0743-5800 .- 1532-4206. ; 45:1, s. 58-71
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Tidskriftsartikel (refereegranskat)abstract
- Background: Being born with low birth weight (LBW) is a risk factor for muscle insulin resistance and type 2 diabetes (T2D), which may be mediated by epigenetic mechanisms programmed by the intrauterine environment. Epigenetic mechanisms exert their prime effects in developing cells. We hypothesized that muscle insulin resistance in LBW subjects may be due to early differential epigenomic and transcriptomic alterations in their immature muscle progenitor cells. Results: Muscle progenitor cells were obtained from 23 healthy young adult men born at term with LBW, and 15 BMI-matched normal birth weight (NBW) controls. The cells were subsequently cultured and differentiated into myotubes. DNA and RNA were harvested before and after differentiation for genome-wide DNA methylation and RNA expression measurements. After correcting for multiple comparisons (q ≤ 0.05), 56 CpG sites were found to be significantly, differentially methylated in myoblasts from LBW compared with NBW men, of which the top five gene-annotated CpG sites (SKI, ARMCX3, NR5A2, NEUROG, ESRRG) previously have been associated to regulation of cholesterol, fatty acid and glucose metabolism and muscle development or hypertrophy. LBW men displayed markedly decreased myotube gene expression levels of the AMPK-repressing tyrosine kinase gene FYN and the histone deacetylase gene HDAC7. Silencing of FYN and HDAC7 was associated with impaired myotube formation, which for HDAC7 reduced muscle glucose uptake. Conclusions: The data provides evidence of impaired muscle development predisposing LBW individuals to T2D is linked to and potentially caused by distinct DNA methylation and transcriptional changes including down regulation of HDAC7 and FYN in their immature myoblast stem cells.
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