Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study
Abstract Background Despite the potential benefits of effective communication, telling a child that they have a life-threatening condition is one of the most daunting challenges. This study aimed to explore the information needs of children with leukemia from the perspectives of children and their p...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-07-01
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| Series: | BMC Pediatrics |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12887-022-03478-w |
| _version_ | 1811293812991983616 |
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| author | Noyuri Yamaji Yasuko Nagamatsu Kyoko Kobayashi Daisuke Hasegawa Yuki Yuza Erika Ota |
| author_facet | Noyuri Yamaji Yasuko Nagamatsu Kyoko Kobayashi Daisuke Hasegawa Yuki Yuza Erika Ota |
| author_sort | Noyuri Yamaji |
| collection | DOAJ |
| description | Abstract Background Despite the potential benefits of effective communication, telling a child that they have a life-threatening condition is one of the most daunting challenges. This study aimed to explore the information needs of children with leukemia from the perspectives of children and their parents at the time of diagnosis. Methods We conducted an exploratory qualitative study using semi-structured individual interviews with children diagnosed with leukemia between seven and 13 years old (n = 7) and their parents (n = 9). Children and parents’ interview data were analyzed using thematic analysis. Results We identified three themes for the information needs of children with leukemia, 1) beginning to cope, 2) avoiding disclosure – protecting child, and 3) informational support. The children and their parents needed to receive understandable information at the best time to cope with cancer. However, the children and parents expressed different views about children’s information needs. The children needed clear information about the disease, treatment, hospitalization, and the benefits of hospitalization from the time of diagnosis. In contrast, the parents felt they should not tell their children about the disease if they were in shock by their child’s cancer diagnosis. Moreover, the parents believed that information that would be incomprehensible to the child and distress should be avoided to protect their children. Conclusions While the information needs of children with leukemia are varied, children and their parents need the information to cope with cancer. However, if the parents believe that the information would be distressful, they might manage communication with their children. Healthcare professionals should explore the motivations behind parents’ attitudes against communication with children and confront conflict. Healthcare professionals also should communicate with the children and their parents to understand their information needs and respect children’s views. |
| first_indexed | 2024-04-13T05:07:14Z |
| format | Article |
| id | doaj.art-35f035638c8547c28954feeef821a09b |
| institution | Directory Open Access Journal |
| issn | 1471-2431 |
| language | English |
| last_indexed | 2024-04-13T05:07:14Z |
| publishDate | 2022-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pediatrics |
| spelling | doaj.art-35f035638c8547c28954feeef821a09b2022-12-22T03:01:08ZengBMCBMC Pediatrics1471-24312022-07-012211910.1186/s12887-022-03478-wInformation needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative studyNoyuri Yamaji0Yasuko Nagamatsu1Kyoko Kobayashi2Daisuke Hasegawa3Yuki Yuza4Erika Ota5Global Health Nursing, Graduate School of Nursing, St. Luke’s International UniversityGlobal Health Nursing, Graduate School of Nursing, St. Luke’s International UniversityChild Health Nursing, Graduate School of Nursing, St. Luke’s International UniversityDepartment of Pediatrics, St. Luke’s International HospitalDepartment of Hematology and Oncology, Tokyo Metropolitan Children’s Medical CenterGlobal Health Nursing, Graduate School of Nursing, St. Luke’s International UniversityAbstract Background Despite the potential benefits of effective communication, telling a child that they have a life-threatening condition is one of the most daunting challenges. This study aimed to explore the information needs of children with leukemia from the perspectives of children and their parents at the time of diagnosis. Methods We conducted an exploratory qualitative study using semi-structured individual interviews with children diagnosed with leukemia between seven and 13 years old (n = 7) and their parents (n = 9). Children and parents’ interview data were analyzed using thematic analysis. Results We identified three themes for the information needs of children with leukemia, 1) beginning to cope, 2) avoiding disclosure – protecting child, and 3) informational support. The children and their parents needed to receive understandable information at the best time to cope with cancer. However, the children and parents expressed different views about children’s information needs. The children needed clear information about the disease, treatment, hospitalization, and the benefits of hospitalization from the time of diagnosis. In contrast, the parents felt they should not tell their children about the disease if they were in shock by their child’s cancer diagnosis. Moreover, the parents believed that information that would be incomprehensible to the child and distress should be avoided to protect their children. Conclusions While the information needs of children with leukemia are varied, children and their parents need the information to cope with cancer. However, if the parents believe that the information would be distressful, they might manage communication with their children. Healthcare professionals should explore the motivations behind parents’ attitudes against communication with children and confront conflict. Healthcare professionals also should communicate with the children and their parents to understand their information needs and respect children’s views.https://doi.org/10.1186/s12887-022-03478-wChildParentLeukemiaInformation needsQualitative research |
| spellingShingle | Noyuri Yamaji Yasuko Nagamatsu Kyoko Kobayashi Daisuke Hasegawa Yuki Yuza Erika Ota Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study BMC Pediatrics Child Parent Leukemia Information needs Qualitative research |
| title | Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study |
| title_full | Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study |
| title_fullStr | Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study |
| title_full_unstemmed | Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study |
| title_short | Information needs of children with leukemia and their parents’ perspectives of their information needs: a qualitative study |
| title_sort | information needs of children with leukemia and their parents perspectives of their information needs a qualitative study |
| topic | Child Parent Leukemia Information needs Qualitative research |
| url | https://doi.org/10.1186/s12887-022-03478-w |
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