| 1. |
- Darcy, Laura, 1967-, et al.
(author)
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Following Young Children's Health and Functioning in Everyday Life Through Their Cancer Trajectory
- 2016
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In: Journal of Pediatric Oncology Nursing. - Thousand Oaks, CA : Sage Publications. - 1043-4542 .- 1532-8457. ; 33:3, s. 173-189
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Journal article (peer-reviewed)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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| 2. |
- Einberg, Eva-Lena, 1965-, et al.
(author)
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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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In: Journal of Pediatric Oncology Nursing. - Thousand Oaks : Sage Publications. - 1043-4542 .- 1532-8457. ; 32:3, s. 153-164
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Journal article (peer-reviewed)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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| 3. |
- Granhagen Jungner, Johanna, et al.
(author)
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Creating a Meeting Point of Understanding : Interpreters' Experiences in Swedish Childhood Cancer Care
- 2016
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In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:2, s. 137-145
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Journal article (peer-reviewed)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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| 4. |
- Gårdling, Jenny, et al.
(author)
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Parents' Lived Experiences During Their Children's Radiotherapy
- 2017
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In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:2, s. 140-147
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Journal article (peer-reviewed)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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| 5. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(author)
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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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In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:2, s. 83-89
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Journal article (peer-reviewed)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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| 6. |
- Lönnerblad, Malin, et al.
(author)
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Affected Aspects Regarding Literacy and Numeracy in Children Treated for Brain Tumors
- 2017
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In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 34:6, s. 397-405
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Journal article (peer-reviewed)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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| 7. |
- Lövgren, Malin, et al.
(author)
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Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
- 2016
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In: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 33:4, s. 297-305
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Journal article (peer-reviewed)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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| 8. |
- Winterling, J, et al.
(author)
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Perceptions of School Among Childhood Cancer Survivors: A Comparison With Peers
- 2015
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In: 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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Journal article (peer-reviewed)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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| 9. |
- Ångström-Brännström, Charlotte, et al.
(author)
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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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In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 35:2, s. 132-148
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Journal article (peer-reviewed)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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