Cathy Gluyas, Lisa Mottram, Rosanne Gibb, Julie Stout
{"title":"对症状前亨廷顿舞蹈病的心理教育需求的识别和干预反应。","authors":"Cathy Gluyas, Lisa Mottram, Rosanne Gibb, Julie Stout","doi":"10.1007/s12687-022-00624-w","DOIUrl":null,"url":null,"abstract":"<p><p>People who are aware that they are gene-positive for Huntington's disease (HD) may face an array of personal, relationship, social, financial and employment challenges prior to the onset of the disease. These challenges have been associated with increased psychological problems such as anxiety and depression. Information and support for people with pre-symptomatic HD is indicated, but there is a scarcity of research and service models to inform psychological interventions. We trialled an intervention strategy involving psychoeducation forums designed specifically for pre-symptomatic HD. In phase I of the study, we asked people with pre-symptomatic HD to identify their uppermost needs for information. Phase II involved the delivery of this information via a series of forums. The forums also provided an opportunity for interaction among the participants. Three forums were attended by 88 people with pre-symptomatic HD and significant others. Analysis of post-forum feedback questionnaires indicated high levels of satisfaction with the forums' structure, content and relevance, and notably, the pre-symptomatic specificity of focus. Additional qualitative data from recordings of forum discussion groups revealed that participants greatly valued the opportunity to meet similar others, and share their concerns and strategies for addressing these concerns. There was an abundance of requests for more forums on a wide range of relevant topics. It is recommended that this model of intervention may be of value for implementation in other HD services or community groups.</p>","PeriodicalId":46965,"journal":{"name":"Journal of Community Genetics","volume":null,"pages":null},"PeriodicalIF":1.5000,"publicationDate":"2023-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9736709/pdf/","citationCount":"1","resultStr":"{\"title\":\"Identification of psychoeducation needs and an intervention response for pre-symptomatic Huntington's disease.\",\"authors\":\"Cathy Gluyas, Lisa Mottram, Rosanne Gibb, Julie Stout\",\"doi\":\"10.1007/s12687-022-00624-w\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>People who are aware that they are gene-positive for Huntington's disease (HD) may face an array of personal, relationship, social, financial and employment challenges prior to the onset of the disease. These challenges have been associated with increased psychological problems such as anxiety and depression. Information and support for people with pre-symptomatic HD is indicated, but there is a scarcity of research and service models to inform psychological interventions. We trialled an intervention strategy involving psychoeducation forums designed specifically for pre-symptomatic HD. In phase I of the study, we asked people with pre-symptomatic HD to identify their uppermost needs for information. Phase II involved the delivery of this information via a series of forums. The forums also provided an opportunity for interaction among the participants. Three forums were attended by 88 people with pre-symptomatic HD and significant others. Analysis of post-forum feedback questionnaires indicated high levels of satisfaction with the forums' structure, content and relevance, and notably, the pre-symptomatic specificity of focus. Additional qualitative data from recordings of forum discussion groups revealed that participants greatly valued the opportunity to meet similar others, and share their concerns and strategies for addressing these concerns. There was an abundance of requests for more forums on a wide range of relevant topics. It is recommended that this model of intervention may be of value for implementation in other HD services or community groups.</p>\",\"PeriodicalId\":46965,\"journal\":{\"name\":\"Journal of Community Genetics\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2023-04-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9736709/pdf/\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Community Genetics\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1007/s12687-022-00624-w\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Community Genetics","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1007/s12687-022-00624-w","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
Identification of psychoeducation needs and an intervention response for pre-symptomatic Huntington's disease.
People who are aware that they are gene-positive for Huntington's disease (HD) may face an array of personal, relationship, social, financial and employment challenges prior to the onset of the disease. These challenges have been associated with increased psychological problems such as anxiety and depression. Information and support for people with pre-symptomatic HD is indicated, but there is a scarcity of research and service models to inform psychological interventions. We trialled an intervention strategy involving psychoeducation forums designed specifically for pre-symptomatic HD. In phase I of the study, we asked people with pre-symptomatic HD to identify their uppermost needs for information. Phase II involved the delivery of this information via a series of forums. The forums also provided an opportunity for interaction among the participants. Three forums were attended by 88 people with pre-symptomatic HD and significant others. Analysis of post-forum feedback questionnaires indicated high levels of satisfaction with the forums' structure, content and relevance, and notably, the pre-symptomatic specificity of focus. Additional qualitative data from recordings of forum discussion groups revealed that participants greatly valued the opportunity to meet similar others, and share their concerns and strategies for addressing these concerns. There was an abundance of requests for more forums on a wide range of relevant topics. It is recommended that this model of intervention may be of value for implementation in other HD services or community groups.
期刊介绍:
The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals.
Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues.
The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries.
The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.