Priya Baby, Priya Treesa Thomas, Binesha P, Jobimol J, Gargi S Kumar, Arun M, Nitish Kamble, Ravi Yadav, Pramod K Pal
{"title":"一项探索晚期威尔逊病患者护理经验的定性研究。","authors":"Priya Baby, Priya Treesa Thomas, Binesha P, Jobimol J, Gargi S Kumar, Arun M, Nitish Kamble, Ravi Yadav, Pramod K Pal","doi":"10.1097/JNN.0000000000000794","DOIUrl":null,"url":null,"abstract":"<p><strong>Abstract: </strong>BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.</p>","PeriodicalId":94240,"journal":{"name":"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses","volume":" ","pages":"239-244"},"PeriodicalIF":0.0000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease.\",\"authors\":\"Priya Baby, Priya Treesa Thomas, Binesha P, Jobimol J, Gargi S Kumar, Arun M, Nitish Kamble, Ravi Yadav, Pramod K Pal\",\"doi\":\"10.1097/JNN.0000000000000794\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Abstract: </strong>BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.</p>\",\"PeriodicalId\":94240,\"journal\":{\"name\":\"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses\",\"volume\":\" \",\"pages\":\"239-244\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-12-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1097/JNN.0000000000000794\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/9/26 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1097/JNN.0000000000000794","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/9/26 0:00:00","PubModel":"Epub","JCR":"","JCRName":"","Score":null,"Total":0}
A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease.
Abstract: BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.