{"title":"拓宽视野:通过多样性和深度探索加强对克里斯蒂安森综合征护理人员的研究。","authors":"Muhammad Khubaib Iftikhar, Qurat Ul Ain Iftikhar","doi":"10.1177/08830738251339568","DOIUrl":null,"url":null,"abstract":"<p><p>The article by St. Pierre et al provides valuable insights into the challenges faced by caregivers of individuals with Christianson syndrome (CS), focusing on emotional burden, symptom progression, and coping strategies. However, several key areas require further exploration. The study's limited sample size and lack of demographic diversity may hinder the generalizability of its findings, as caregivers' experiences are shaped by cultural and geographic factors. Expanding the sample size and including caregivers from diverse backgrounds would offer a more comprehensive understanding of their needs. Furthermore, the study could have delved deeper into specific caregiver concerns, such as the diagnostic process and available support systems. Previous research underscores the importance of clear communication and robust support networks during the diagnostic journey of rare diseases. Future studies should prioritize larger, more diverse samples and explore critical areas such as diagnostic challenges, resource accessibility, and the efficacy of support systems to develop targeted interventions and improve caregiver outcomes.</p>","PeriodicalId":15319,"journal":{"name":"Journal of Child Neurology","volume":" ","pages":"8830738251339568"},"PeriodicalIF":2.0000,"publicationDate":"2025-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Broadening the Scope: Enhancing Caregiver Research in Christianson Syndrome Through Diversity and In-Depth Exploration.\",\"authors\":\"Muhammad Khubaib Iftikhar, Qurat Ul Ain Iftikhar\",\"doi\":\"10.1177/08830738251339568\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>The article by St. Pierre et al provides valuable insights into the challenges faced by caregivers of individuals with Christianson syndrome (CS), focusing on emotional burden, symptom progression, and coping strategies. However, several key areas require further exploration. The study's limited sample size and lack of demographic diversity may hinder the generalizability of its findings, as caregivers' experiences are shaped by cultural and geographic factors. Expanding the sample size and including caregivers from diverse backgrounds would offer a more comprehensive understanding of their needs. Furthermore, the study could have delved deeper into specific caregiver concerns, such as the diagnostic process and available support systems. Previous research underscores the importance of clear communication and robust support networks during the diagnostic journey of rare diseases. Future studies should prioritize larger, more diverse samples and explore critical areas such as diagnostic challenges, resource accessibility, and the efficacy of support systems to develop targeted interventions and improve caregiver outcomes.</p>\",\"PeriodicalId\":15319,\"journal\":{\"name\":\"Journal of Child Neurology\",\"volume\":\" \",\"pages\":\"8830738251339568\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2025-05-25\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Child Neurology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/08830738251339568\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Child Neurology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/08830738251339568","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
摘要
St. Pierre等人的文章提供了有价值的见解,探讨了Christianson综合征(CS)患者护理人员所面临的挑战,重点关注了情绪负担、症状进展和应对策略。然而,有几个关键领域需要进一步探索。由于看护人的经历受到文化和地理因素的影响,该研究的样本量有限,缺乏人口多样性,这可能会阻碍其研究结果的推广。扩大样本量并纳入来自不同背景的护理人员,将有助于更全面地了解他们的需求。此外,这项研究本可以更深入地研究具体的护理人员关注的问题,比如诊断过程和可用的支持系统。以前的研究强调了在罕见疾病诊断过程中明确沟通和强大支持网络的重要性。未来的研究应优先考虑更大、更多样化的样本,并探索关键领域,如诊断挑战、资源可及性和支持系统的有效性,以制定有针对性的干预措施并改善护理人员的结果。
Broadening the Scope: Enhancing Caregiver Research in Christianson Syndrome Through Diversity and In-Depth Exploration.
The article by St. Pierre et al provides valuable insights into the challenges faced by caregivers of individuals with Christianson syndrome (CS), focusing on emotional burden, symptom progression, and coping strategies. However, several key areas require further exploration. The study's limited sample size and lack of demographic diversity may hinder the generalizability of its findings, as caregivers' experiences are shaped by cultural and geographic factors. Expanding the sample size and including caregivers from diverse backgrounds would offer a more comprehensive understanding of their needs. Furthermore, the study could have delved deeper into specific caregiver concerns, such as the diagnostic process and available support systems. Previous research underscores the importance of clear communication and robust support networks during the diagnostic journey of rare diseases. Future studies should prioritize larger, more diverse samples and explore critical areas such as diagnostic challenges, resource accessibility, and the efficacy of support systems to develop targeted interventions and improve caregiver outcomes.
期刊介绍:
The Journal of Child Neurology (JCN) embraces peer-reviewed clinical and investigative studies from a wide-variety of neuroscience disciplines. Focusing on the needs of neurologic patients from birth to age 18 years, JCN covers topics ranging from assessment of new and changing therapies and procedures; diagnosis, evaluation, and management of neurologic, neuropsychiatric, and neurodevelopmental disorders; and pathophysiology of central nervous system diseases.