Lieke M van den Heuvel, Anke J Woudstra, Sanne van der Hout, Suze Jans, Tjerk Wiersma, Wybo Dondorp, Erwin Birnie, Phillis Lakeman, Lidewij Henneman, Mirjam Plantinga, Irene M van Langen
{"title":"初级保健专业人员对基于人群的扩大携带者筛查的看法:在线焦点小组研究。","authors":"Lieke M van den Heuvel, Anke J Woudstra, Sanne van der Hout, Suze Jans, Tjerk Wiersma, Wybo Dondorp, Erwin Birnie, Phillis Lakeman, Lidewij Henneman, Mirjam Plantinga, Irene M van Langen","doi":"10.1093/fampra/cmad011","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Population-based expanded carrier screening (ECS) involves screening for multiple recessive diseases offered to all couples considering a pregnancy or during pregnancy. Previous research indicates that in some countries primary care professionals are perceived as suitable providers for ECS. However, little is known about their perspectives. We therefore aimed to explore primary care professionals' views on population-based ECS.</p><p><strong>Methods: </strong>Four online focus groups with 14 general practitioners (GPs) and 16 community midwives were conducted in the Netherlands.</p><p><strong>Results: </strong>Our findings highlight various perspectives on the desirability of population-based ECS. Participants agreed that ECS could enhance reproductive autonomy and thereby prevent suffering of the child and/or parents. However, they also raised several ethical, societal, and psychological concerns, including a tendency towards a perfect society, stigmatization, unequal access to screening and negative psychosocial consequences. Participants believed that provision of population-based ECS would be feasible if prerequisites regarding training and reimbursement for providers would be fulfilled. most GPs considered themselves less suitable or capable of providing ECS, in contrast to midwives who did consider themselves suitable. Nevertheless, participants believed that, if implemented, ECS should be offered in primary care or by public health services rather than as hospital-based specialized care, because they believed a primary care ECS offer increases access in terms of time and location.</p><p><strong>Conclusions: </strong>While participants believed that an ECS offer would be feasible, they questioned its desirability and priority. Studies on the desirability and feasibility of population-based ECS offered in primary care or public health settings are needed.</p>","PeriodicalId":12209,"journal":{"name":"Family practice","volume":null,"pages":null},"PeriodicalIF":2.4000,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11324326/pdf/","citationCount":"0","resultStr":"{\"title\":\"Primary care professionals' views on population-based expanded carrier screening: an online focus group study.\",\"authors\":\"Lieke M van den Heuvel, Anke J Woudstra, Sanne van der Hout, Suze Jans, Tjerk Wiersma, Wybo Dondorp, Erwin Birnie, Phillis Lakeman, Lidewij Henneman, Mirjam Plantinga, Irene M van Langen\",\"doi\":\"10.1093/fampra/cmad011\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Population-based expanded carrier screening (ECS) involves screening for multiple recessive diseases offered to all couples considering a pregnancy or during pregnancy. Previous research indicates that in some countries primary care professionals are perceived as suitable providers for ECS. However, little is known about their perspectives. We therefore aimed to explore primary care professionals' views on population-based ECS.</p><p><strong>Methods: </strong>Four online focus groups with 14 general practitioners (GPs) and 16 community midwives were conducted in the Netherlands.</p><p><strong>Results: </strong>Our findings highlight various perspectives on the desirability of population-based ECS. Participants agreed that ECS could enhance reproductive autonomy and thereby prevent suffering of the child and/or parents. However, they also raised several ethical, societal, and psychological concerns, including a tendency towards a perfect society, stigmatization, unequal access to screening and negative psychosocial consequences. Participants believed that provision of population-based ECS would be feasible if prerequisites regarding training and reimbursement for providers would be fulfilled. most GPs considered themselves less suitable or capable of providing ECS, in contrast to midwives who did consider themselves suitable. Nevertheless, participants believed that, if implemented, ECS should be offered in primary care or by public health services rather than as hospital-based specialized care, because they believed a primary care ECS offer increases access in terms of time and location.</p><p><strong>Conclusions: </strong>While participants believed that an ECS offer would be feasible, they questioned its desirability and priority. Studies on the desirability and feasibility of population-based ECS offered in primary care or public health settings are needed.</p>\",\"PeriodicalId\":12209,\"journal\":{\"name\":\"Family practice\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.4000,\"publicationDate\":\"2024-08-14\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11324326/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Family practice\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1093/fampra/cmad011\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"MEDICINE, GENERAL & INTERNAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Family practice","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/fampra/cmad011","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
Primary care professionals' views on population-based expanded carrier screening: an online focus group study.
Background: Population-based expanded carrier screening (ECS) involves screening for multiple recessive diseases offered to all couples considering a pregnancy or during pregnancy. Previous research indicates that in some countries primary care professionals are perceived as suitable providers for ECS. However, little is known about their perspectives. We therefore aimed to explore primary care professionals' views on population-based ECS.
Methods: Four online focus groups with 14 general practitioners (GPs) and 16 community midwives were conducted in the Netherlands.
Results: Our findings highlight various perspectives on the desirability of population-based ECS. Participants agreed that ECS could enhance reproductive autonomy and thereby prevent suffering of the child and/or parents. However, they also raised several ethical, societal, and psychological concerns, including a tendency towards a perfect society, stigmatization, unequal access to screening and negative psychosocial consequences. Participants believed that provision of population-based ECS would be feasible if prerequisites regarding training and reimbursement for providers would be fulfilled. most GPs considered themselves less suitable or capable of providing ECS, in contrast to midwives who did consider themselves suitable. Nevertheless, participants believed that, if implemented, ECS should be offered in primary care or by public health services rather than as hospital-based specialized care, because they believed a primary care ECS offer increases access in terms of time and location.
Conclusions: While participants believed that an ECS offer would be feasible, they questioned its desirability and priority. Studies on the desirability and feasibility of population-based ECS offered in primary care or public health settings are needed.
期刊介绍:
Family Practice is an international journal aimed at practitioners, teachers, and researchers in the fields of family medicine, general practice, and primary care in both developed and developing countries.
Family Practice offers its readership an international view of the problems and preoccupations in the field, while providing a medium of instruction and exploration.
The journal''s range and content covers such areas as health care delivery, epidemiology, public health, and clinical case studies. The journal aims to be interdisciplinary and contributions from other disciplines of medicine and social science are always welcomed.