Rachel Klausner Shyman, Sveta Roberman, Gal Goldstein, Sabaa Masarwe, Amy Solnica, Rachel Yaffa Zisk-Rony
{"title":"父母在家为癌症儿童提供复杂医疗护理的挑战：一项横断面融合混合方法研究。","authors":"Rachel Klausner Shyman, Sveta Roberman, Gal Goldstein, Sabaa Masarwe, Amy Solnica, Rachel Yaffa Zisk-Rony","doi":"10.1111/jocn.70115","DOIUrl":null,"url":null,"abstract":"<p><strong>Aim: </strong>To explore challenges parents of children with cancer encounter while providing complex medical care at home.</p><p><strong>Methods: </strong>Design: Cross-sectional convergent mixed-methods study.</p><p><strong>Instruments: </strong>Questionnaire and open interviews that mirrored and complemented each other.</p><p><strong>Results: </strong>Parents (n = 32), with no prior medical training, were expected to remain constantly vigilant as they monitored and managed rapidly changing situations. Regardless of time from diagnosis, they detected a mean of 3.3 ± 1.4 (0-6) symptoms, reported administering up to 22 daily medications, including cytotoxics, narcotics and injections, and dealt with many related challenges. Parents described needing responsive communication channels, especially when dealing with bleeding and infection emergency situations during off-hours.</p><p><strong>Conclusions: </strong>Findings highlight the constantly shifting demands when managing a child with cancer at home. Educational programmes that address parental needs throughout treatment, tailored to protocol changes and individual circumstances, should be expanded and further developed.</p><p><strong>Patient care implications: </strong>Parents need continual education regarding home management throughout their children's illness and treatment.</p><p><strong>Impact: </strong>This study addresses challenges parents of children with cancer encounter while providing complex medical care at home. The findings demonstrated that parents, responsible for administering numerous medications via various routes and managing symptoms and side effects, did not feel confident performing these tasks regardless of time from diagnosis. Nurses should adapt ongoing parental education regarding complex medical tasks, symptoms, side effects, emergency detection and management for children with cancer at home. The study adhered to the Mixed Methods Appraisal Tool (MMAT) and STROBE reporting method.</p><p><strong>Patient contribution: </strong>Parents of children with cancer participated in the design and questionnaire validation.</p>","PeriodicalId":50236,"journal":{"name":"Journal of Clinical Nursing","volume":" ","pages":""},"PeriodicalIF":3.5000,"publicationDate":"2025-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Challenges of Parents While Providing Complex Medical Care at Home to Children With Cancer: A Cross-Sectional Convergent Mixed Methods Study.\",\"authors\":\"Rachel Klausner Shyman, Sveta Roberman, Gal Goldstein, Sabaa Masarwe, Amy Solnica, Rachel Yaffa Zisk-Rony\",\"doi\":\"10.1111/jocn.70115\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Aim: </strong>To explore challenges parents of children with cancer encounter while providing complex medical care at home.</p><p><strong>Methods: </strong>Design: Cross-sectional convergent mixed-methods study.</p><p><strong>Instruments: </strong>Questionnaire and open interviews that mirrored and complemented each other.</p><p><strong>Results: </strong>Parents (n = 32), with no prior medical training, were expected to remain constantly vigilant as they monitored and managed rapidly changing situations. Regardless of time from diagnosis, they detected a mean of 3.3 ± 1.4 (0-6) symptoms, reported administering up to 22 daily medications, including cytotoxics, narcotics and injections, and dealt with many related challenges. Parents described needing responsive communication channels, especially when dealing with bleeding and infection emergency situations during off-hours.</p><p><strong>Conclusions: </strong>Findings highlight the constantly shifting demands when managing a child with cancer at home. Educational programmes that address parental needs throughout treatment, tailored to protocol changes and individual circumstances, should be expanded and further developed.</p><p><strong>Patient care implications: </strong>Parents need continual education regarding home management throughout their children's illness and treatment.</p><p><strong>Impact: </strong>This study addresses challenges parents of children with cancer encounter while providing complex medical care at home. The findings demonstrated that parents, responsible for administering numerous medications via various routes and managing symptoms and side effects, did not feel confident performing these tasks regardless of time from diagnosis. Nurses should adapt ongoing parental education regarding complex medical tasks, symptoms, side effects, emergency detection and management for children with cancer at home. The study adhered to the Mixed Methods Appraisal Tool (MMAT) and STROBE reporting method.</p><p><strong>Patient contribution: </strong>Parents of children with cancer participated in the design and questionnaire validation.</p>\",\"PeriodicalId\":50236,\"journal\":{\"name\":\"Journal of Clinical Nursing\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":3.5000,\"publicationDate\":\"2025-09-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Clinical Nursing\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1111/jocn.70115\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"NURSING\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Clinical Nursing","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/jocn.70115","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"NURSING","Score":null,"Total":0}
Instruments: Questionnaire and open interviews that mirrored and complemented each other.
Results: Parents (n = 32), with no prior medical training, were expected to remain constantly vigilant as they monitored and managed rapidly changing situations. Regardless of time from diagnosis, they detected a mean of 3.3 ± 1.4 (0-6) symptoms, reported administering up to 22 daily medications, including cytotoxics, narcotics and injections, and dealt with many related challenges. Parents described needing responsive communication channels, especially when dealing with bleeding and infection emergency situations during off-hours.
Conclusions: Findings highlight the constantly shifting demands when managing a child with cancer at home. Educational programmes that address parental needs throughout treatment, tailored to protocol changes and individual circumstances, should be expanded and further developed.
Patient care implications: Parents need continual education regarding home management throughout their children's illness and treatment.
Impact: This study addresses challenges parents of children with cancer encounter while providing complex medical care at home. The findings demonstrated that parents, responsible for administering numerous medications via various routes and managing symptoms and side effects, did not feel confident performing these tasks regardless of time from diagnosis. Nurses should adapt ongoing parental education regarding complex medical tasks, symptoms, side effects, emergency detection and management for children with cancer at home. The study adhered to the Mixed Methods Appraisal Tool (MMAT) and STROBE reporting method.
Patient contribution: Parents of children with cancer participated in the design and questionnaire validation.
期刊介绍：
The Journal of Clinical Nursing (JCN) is an international, peer reviewed, scientific journal that seeks to promote the development and exchange of knowledge that is directly relevant to all spheres of nursing practice. The primary aim is to promote a high standard of clinically related scholarship which advances and supports the practice and discipline of nursing. The Journal also aims to promote the international exchange of ideas and experience that draws from the different cultures in which practice takes place. Further, JCN seeks to enrich insight into clinical need and the implications for nursing intervention and models of service delivery. Emphasis is placed on promoting critical debate on the art and science of nursing practice.
JCN is essential reading for anyone involved in nursing practice, whether clinicians, researchers, educators, managers, policy makers, or students. The development of clinical practice and the changing patterns of inter-professional working are also central to JCN''s scope of interest. Contributions are welcomed from other health professionals on issues that have a direct impact on nursing practice.
We publish high quality papers from across the methodological spectrum that make an important and novel contribution to the field of clinical nursing (regardless of where care is provided), and which demonstrate clinical application and international relevance.
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