parental attitudes

  • 文章类型: Journal Article
    UNASSIGNED: Data from recent years show that the COVID-19 pandemic has significantly reduced the scope of child immunisation worldwide. If the numbers continue to fall, we may have a vaccination crisis. In order to understand the local factors of this phenomenon, we studied parents\' viewpoint towards childhood vaccination in Lithuania. Therefore, the aim of our study was to determine the impact of parental attitudes on children\'s vaccination.
    UNASSIGNED: A web-based cross-sectional study was made in Lithuania from October 20th to November 3rd, 2020, using Google Forms. An anonymous questionnaire included both quantitative and qualitative questions. The questionnaire was distributed to the general population in Lithuania via social media and a snowball sampling. Only parents who have at least one child under 18 years old were involved in the study. We analysed the parents\' attitudes towards vaccination by their socioeconomic and demographic determinants using MS Excel and OpenEpi tools. The respondents were considered vaccine supporters if they vaccinated all their children with state-reimbursed vaccines or only vaccinated some of their children, and vaccine sceptics if they did not vaccinate their children with state-reimbursed vaccines.
    UNASSIGNED: The population of our research consisted of 775 parents. There were more males against vaccination than females, respectively, 59.6% and 33.2%. 65.0% of all respondents stated that they vaccinated their children with the full course of vaccines, while the remaining 35.0% did not vaccinate. University-level education dominated in both pro-vaccine and anti-vaccine groups. We found that 16.9% of parents who were unvaccinated as children themselves tend not to vaccinate their children. However, in the pro-vaxx group, only 0.7% of parents were unvaccinated during childhood. 50.8% of vaccine sceptics were not fully informed by healthcare professionals about the benefits and risks of vaccination, while only 31.6% of vaccine supporters were not informed. Social environment did not have an impact on the decision whether to vaccinate or not to vaccinate a child among both vaccine advocates and vaccine deniers (accordingly, 51.2% and 42.9%). 29.3% of respondents stated that the cost of paid vaccinations was too high. Open-text survey responses gave us more in-depth insight about the parental decision-making process. Protection of children and society from infectious diseases (31.7%) was mentioned as the main reason for vaccination. Whereas vaccine-hesitant parents were mostly concerned about already-occurring side effects or their risk (43.4%).
    UNASSIGNED: Our findings confirmed that vaccine hesitancy was associated with not being vaccinated in childhood themselves, lack of information from medical practitioners and male gender. The price of vaccines also had an impact on immunisation rates - more than one-third of the vaccine supporting parents indicated that the cost of paid vaccinations was too high. The main incentive for vaccine compliance was parents\' desire to protect their children and society from infectious diseases. Whereas vaccine-hesitant parents were mostly concerned about already occurring side effects or their risk. There was no consensus, whether vaccination of children should be mandatory in Lithuania, as the answers to the question were almost evenly distributed. The formation of parents\' attitudes towards children\'s vaccination is a complex process that is determined by parents\' attitudes towards the health care system, lack of trust in doctors, and gaps in communication about the benefits and risks of vaccination. All of this information should be taken into account in health policy-making.
    UNASSIGNED: Pastarųjų metų duomenys rodo, kad COVID-19 pandemija labai sumažino vaikų imunizacijos mastą visame pasaulyje. Jei skaičiai ir toliau mažės, gali kilti vakcinacijos krizė. Siekdami suprasti lokalias šio reiškinio priežastis, tyrėme tėvų požiūrį į skiepijimą Lietuvoje. Todėl šiuo tyrimu buvo siekiama nustatyti tėvų požiūrio įtaką vaikų skiepijimui.
    UNASSIGNED: Lietuvos populiacijoje buvo atliktas skerspjūvio tyrimas nuo 2020 m. spalio 20 d. iki lapkričio 3 d., internete, naudojant ,,Google“ formas. Anoniminėje anketoje buvo pateikti tiek kiekybiniai, tiek kokybiniai klausimai. Anketa buvo išplatinta per socialinius tinklus bei naudojant „sniego gniūžtės“ atranką. Tyrime galėjo dalyvauti tik tėvai, turintys bent vieną vaiką iki 18 metų amžiaus. Gautus duomenis apie tėvų požiūrį į vaikų skiepijimą pagal socialinius, ekonominius ir demografinius veiksnius išanalizavome naudodami MS Excel ir OpenEpi įrankius. Respondentai buvo laikomi skiepų šalininkais, jei jie skiepijo savo vaikus valstybės kompensuojamomis vakcinomis arba skiepijo tik kai kuriuos vaikus. Tuo tarpu, vakcinacijos oponentais – jei neskiepijo savo vaikų valstybės kompensuojamomis vakcinomis.
    UNASSIGNED: Mūsų tyrime dalyvavo 775 tėvai. Vakcinacijos oponentų vyrų buvo daugiau nei moterų, atitinkamai 59.6% ir 33.2%. 65.0% visų apklaustųjų nurodė, kad savo vaikus skiepija visu skiepų kursu, o likę 35.0% – neskiepijo. Universitetinis išsilavinimas dominavo tiek vakcinuojančių, tiek nevakcinuojančiųjų grupėse. Nustatėme, kad 16.9% tėvų, kurie patys vaikystėje buvo neskiepyti, yra linkę neskiepyti savo vaikų. Tačiau vakcinuojančiųjų grupėje tik 0.7% tėvų buvo neskiepyti vaikystėje. 50.8% vakcinacijos skeptikų teigė, jog sveikatos priežiūros specialistai neinformavo jų apie skiepijimo naudą ir riziką, tuo tarpu tik 31.6% vakcinacijai pritariančiųjų nebuvo informuoti. Socialinė aplinka neturėjo įtakos apsisprendimui, ar skiepyti vaiką tiek tarp skiepų šalininkų, tiek skiepų oponentų (atitinkamai: 51.2% ir 42.9%). 29.3% respondentų teigė, kad mokamų skiepų kaina yra per didelė. Atviro klausimo atsakymai suteikė mums išsamesnės informacijos apie tėvų sprendimų priėmimo procesą. Pagrindinis skiepijimo motyvas buvo vaikų ir visuomenės apsauga nuo infekcinių ligų (31.7%). Tuo tarpu skiepyti nesiryžę tėvai nerimavo dėl jau pasireiškusių šalutinių poveikių ar jų rizikos (43.4%).
    UNASSIGNED: Mūsų išvados patvirtino, kad nenoras skiepyti savo vaikų buvo susijęs su pačių tėvų vakcinacijos statusu vaikystėje, informacijos iš gydytojų stoka ir vyriška lytimi. Skiepijimo apimtims įtakos turėjo ir skiepų kaina – daugiau nei trečdalis skiepijimui pritariančių tėvų nurodė, kad mokamų skiepų kaina yra per didelė. Pagrindinė paskata skiepyti buvo tėvų noras apsaugoti savo vaikus ir visuomenę nuo infekcinių ligų. Tuo tarpu vakcinacijos oponentai dažniausiai nerimavo dėl jau pasireiškusių šalutinių poveikių ar jų rizikos. Vieningos nuomonės, ar Lietuvoje privaloma skiepyti vaikus, nebuvo, nes atsakymai į klausimą pasiskirstė beveik po lygiai. Tėvų požiūrio į vaikų skiepijimą formavimasis yra sudėtingas procesas, kurį lemia tėvų požiūris į sveikatos priežiūros sistemą, nepasitikėjimas gydytojais bei komunikacijos apie skiepijimo naudą ir riziką spragos. Į visus šiuos aspektus reikėtų atsižvelgti formuojant sveikatos politiką.
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  • 文章类型: Journal Article
    多种因素被认为与抑郁症的发展有关,但机制尚不清楚。尽管有几份报告表明父母在童年时期的态度,抑郁沉思,和睡眠障碍都会影响抑郁症状,以及这四个变量中的两个之间的关联,根据我们的知识,迄今为止,还没有任何报告对这四个变量之间的关联进行了调查.
    在2017年4月至2018年4月期间,对576名同意参与本研究的成年人进行了问卷调查。问卷调查评估了儿童时期父母的态度,抑郁沉思,睡眠障碍,和成年后的抑郁症状。通过结构方程模型检验了四个变量之间的关联。
    关于直接影响,父母的“照顾”态度对抑郁沉思和抑郁症状产生了负面影响,而“过度保护”对抑郁沉思有积极影响。抑郁沉思对睡眠障碍和抑郁症状具有积极影响,而睡眠障碍对抑郁症状有积极影响。关于间接影响,抑郁沉思介导了父母态度与睡眠障碍或抑郁症状之间的关联。此外,睡眠障碍介导了抑郁沉思和抑郁症状之间的关联。护理和过度保护表现出相反的效果。该模型的拟合度很高。
    这项研究的结果表明,这四个变量之间存在关联。与先前父母态度密切相关的抑郁反思性和睡眠障碍的临床评估和干预可能导致抑郁症状的改善。
    UNASSIGNED: Various factors are thought to be involved in the development of depression, but the mechanisms are not yet clear. Although several reports have demonstrated that parental attitude experienced in childhood, depressive rumination, and sleep disturbances each influence depressive symptoms, and the association between two of these four variables, to our knowledge, no reports to date have investigated the association among the four variables.
    UNASSIGNED: A questionnaire survey was administered to 576 adults who agreed to participate in this study between April 2017 and April 2018. Questionnaires assessed parental attitudes experienced in childhood, depressive rumination, sleep disturbances, and depressive symptoms in adulthood. The associations among the four variables were tested by structural equation modeling.
    UNASSIGNED: Regarding the direct effects, the parental attitude of \"care\" had a negative influence on depressive rumination and depressive symptoms, whereas \"overprotection\" had a positive influence on depressive rumination. Depressive rumination had a positive influence on sleep disturbance and depressive symptoms, whereas sleep disturbances had a positive influence on depressive symptoms. Regarding indirect effects, depressive rumination mediated the association between parental attitudes and sleep disturbances or depressive symptoms. Furthermore, sleep disturbances mediated the association between depressive rumination and depressive symptoms. Care and overprotection showed opposite effects. The goodness of fit of this model was high.
    UNASSIGNED: The results of this study demonstrated that there were associations among the four variables. Clinical assessment and intervention of depressive rumination and sleep disturbances that are closely associated with previous parental attitudes may lead to an improvement of depressive symptoms.
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  • 文章类型: Journal Article
    获得原发性线粒体疾病(PMD)的遗传诊断通常被视为诊断冒险。然而,即使在接受诊断后,受影响儿童的父母经历持续的治疗和预后不确定性以及相当大的心理社会挑战。对13名儿童(2-19岁)的父母进行了半结构化访谈(N=24),这些儿童具有遗传证实的PMD。获得了父亲(N=11)和母亲(N=13)的观点,并对所有访谈进行主题分析。基因诊断对父母来说是有价值和授权的,尽管引发了不同的情绪反应。虽然诊断有助于集中管理决策,在浏览医疗保健系统时,家庭经常感到不知所措和得不到支持。大多数父母报告说他们的浪漫关系受到严重影响。社会支持的来源多种多样,与特定疾病的社区支持小组相比,更喜欢建立的友谊和家庭支持网络。大多数父母都赞成在将来怀孕时进行产前基因检测。这项研究提供了对父母在其子女中进行PMD遗传诊断后的生活经历的见解。调查结果引起了人们对支持性护理需求的认识,并强调了应解决的重要差距,以确保父母在PMD管理的整体框架内得到支持。
    Obtaining a genetic diagnosis of a primary mitochondrial disease (PMD) is often framed as a diagnostic odyssey. Yet, even after receiving a diagnosis, parents of affected children experience ongoing therapeutic and prognostic uncertainty and considerable psychosocial challenges. Semi-structured interviews (N = 24) were conducted with parents of 13 children (aged 2-19 years) with a genetically confirmed PMD. Paternal (N = 11) and maternal (N = 13) perspectives were obtained, and thematic analysis was performed on all interviews. A genetic diagnosis was valuable and empowering for parents, despite eliciting varied emotional responses. While the diagnosis helped focus management decisions, families often felt overwhelmed and unsupported in navigating the healthcare system. Most parents reported a serious impact on their romantic relationship. The sources of social support varied, with a preference for established friendship and family support networks over disease-specific community support groups. Most parents favored prenatal genetic testing in the event of a future pregnancy. This study provides insight into the lived experiences of parents after a genetic diagnosis of PMD in their children. The findings draw awareness to supportive care needs and highlight important gaps that should be addressed to ensure that parents feel supported within a holistic framework of management for PMDs.
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  • 文章类型: Journal Article
    人乳头瘤病毒(HPV)是美国最常见的性传播感染,尽管有安全有效的HPV疫苗,只有一半符合条件的青少年完成了疫苗系列。入学要求是提高儿童和青少年疫苗接种率并减轻HPV相关癌症负担的一种行之有效的策略。这项研究调查了社区对弗吉尼亚州HPV疫苗入学任务的看法,以及立法中包括的低门槛豁免选项的后果。我们对社区成员进行了40次采访,其中包括对父母的15次采访,19与医疗保健提供者一起,6与社区领袖。面试询问知识,信仰,以及对HPV疫苗和任务的态度。采访被记录下来,转录,并进行了主题分析。尽管医疗保健提供者支持这项任务,人们普遍对入学政策感到困惑,并担心豁免方案破坏了疫苗接种工作。了解社区层面的观念变化和对学校疫苗接种任务的反应对于设计有效的公共卫生策略至关重要。研究结果表明,全州范围内的疫苗接种计划应先发制人地确定低摄取地区,并向社区提供有针对性的信息。未来的任务应避免在与疫苗有关的立法中使用模棱两可和相互矛盾的语言。
    Human papillomavirus (HPV) is the most common sexually transmitted infection in the United States; yet, despite the availability of safe and effective HPV vaccines, only half of eligible adolescents have completed the vaccine series. School-entry requirements are one proven strategy to increase vaccination rates among children and youth and reduce the burden of HPV-related cancer. This study investigated community perceptions of an HPV vaccine school-entry mandate in Virginia and the consequences of a low threshold exemption option included in the legislation. We conducted 40 interviews with community members including 15 interviews with parents, 19 with healthcare providers, and 6 with community leaders. Interviews asked about knowledge, beliefs, and attitudes concerning the HPV vaccine and mandate. Interviews were recorded, transcribed, and thematically analyzed. Despite healthcare provider support for the mandate, there was widespread confusion over the school-entry policy and concern that the exemption option undermined vaccination efforts. Understanding variations in community-level perceptions and response to school-based vaccination mandates is crucial for designing effective public health strategies. Findings suggest statewide vaccination initiatives should preemptively identify low uptake areas and provide targeted information to communities. Future mandates should avoid the use of ambiguous and contradictory language in vaccine-related legislation.
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  • 文章类型: Journal Article
    (1)背景:我们旨在分析维度,内部一致性,和学前饮食的结构效度,生活方式,和睡眠态度量表(PRELSA量表),这是一种用来测量肥胖行为的工具。(2)方法:我们通过在线调查进行了观察性研究。PRELSA量表由13个维度和60个与最常见的致胖行为和态度有关的项目组成。此外,我们从样本中获得了社会人口统计学特征和具体习惯。我们获得了安达卢西亚(西班牙南部)2至6岁学龄前儿童的791名父母和照顾者的答复。我们通过探索性因子分析(EFA)分析了维度,通过克朗巴赫的阿尔法一致性,通过验证性因子分析(CFA)的结构效度,多组CFA模型的测量不变性。(3)结果:EFA显示有48个项目的14维结构。内部稠度在所有尺寸上都是可接受的(Cronbach的Alpha范围为0.72至0.97)。在CFA中以良好的拟合指数(CFI和TLI>0.9和RMSEA<0.05)证实了结构。我们确保量表在教育方面具有测量不变性,收入,和婚姻状况。(4)结论:PRELSA量表显示出有希望的特性,有可能在西班牙测量致胖行为,这可能是未来在医疗保健和教育环境中与预防儿童肥胖相关的干预措施的基础。
    (1) Background: We aimed to analyze the dimensionality, internal consistency, and structural validity of the Preschool Eating, Lifestyle, and Sleeping Attitudes Scale (PRELSA Scale), which is an instrument that was designed to measure obesogenic behaviors. (2) Methods: We carried out an observational study by means of an online survey. The PRELSA Scale consists of 13 dimensions and 60 items relating to the most common obesogenic behaviors and attitudes. Additionally, we obtained sociodemographic characteristics and concrete habits from the sample. We obtained the responses of 791 parents and caregivers of preschool children between 2 and 6 years of age in Andalusia (southern Spain). We analyzed dimensionality through an Exploratory Factor Analysis (EFA), consistency through Cronbach\'s Alpha, structural validity through a Confirmatory Factor Analysis (CFA), and measurement invariance with multigroup CFA models. (3) Results: The EFA showed a 14-dimensional structure with 48 items. The internal consistency was acceptable in all dimensions (Cronbach\'s Alpha range of 0.72 to 0.97). The structure was confirmed in the CFA with good fit indices (CFI and TLI > 0.9 and RMSEA < 0.05). We ensured that the scale had measurement invariance regarding education, income, and marital status. (4) Conclusions: The PRELSA Scale shows promising properties that have the potential to measure obesogenic behaviors in Spain, which could be the basis for future interventions associated with the prevention of childhood obesity in healthcare and educational settings.
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  • 文章类型: Journal Article
    多年来,父母对健康的态度与儿童发展之间的关系一直是人们关注的话题;然而,该领域的研究成果仍不一致。本研究旨在建立父母对儿童口腔健康态度(PACOH)量表的结构方程模型,使用该模型分析父母态度与人口统计学变量与父母和子女口腔健康相关行为之间的关系。共有302名家长(87%的母亲)回答了关于他们自己和孩子的问题,4-7岁,与口腔健康相关的行动,并完成了38个项目的PACOH量表。结构方程模型表明,PACOH量表捕获的父母态度可以拟合到二阶阶乘模型,即使规模缩短到21项。该模型表现出良好的拟合特性(CFI=0.925;FI=0.927;GFI=0.915;RMSEA=0.049),使其成为检查父母态度结构的可靠工具。该模型用于多组分析,揭示父母对孩子口腔健康的积极态度与父母和孩子的口腔健康促进行为之间的密切关系,例如定期刷牙(p<0.001),看牙医(p=0.027),父母帮助孩子刷牙(p<0.001)。根据这些发现,结论是,父母对儿童口腔健康的态度应被视为影响儿童口腔健康促进行为发展的重要因素。
    The relationship between parental attitudes towards health and child development has been a topic of interest for many years; however, research results in this field are still inconsistent. This study aimed to develop a structural equation model of the Parental Attitudes toward Child Oral Health (PACOH) scale, using this model to analyse the relationship between parental attitudes with demographic variables and the oral health-related behaviour of parents and children. A total of 302 parents (87% mothers) answered questions regarding their own and their children\'s, aged 4-7 years, oral health-related actions and completed the 38-item PACOH scale. The structural equation model indicated that parental attitudes captured by the PACOH scale can be fitted to a second-order factorial model, even with the scale shortened to 21 items. The model demonstrated good fit characteristics (CFI = 0.925; IFI = 0.927; GFI = 0.915; RMSEA = 0.049), making it a reliable tool for examining the structure of parental attitudes. This model was employed in the multi-group analysis, revealing the close relationship between positive parents\' attitudes towards their child\'s oral health and oral health-promoting behaviour both in parents and children, such as regular tooth brushing (p < 0.001), visiting the dentist (p = 0.027), and parents helping their child brush his/her teeth (p < 0.001). In light of these findings, it was concluded that Parental Attitudes towards Child Oral Health should be considered an essential factor influencing the development of oral health-promoting behaviour in children.
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  • 文章类型: Journal Article
    目的:调查影响父母对马地那子女正畸治疗决定的社会经济和个人因素,沙特阿拉伯。
    方法:采用数字自我管理问卷收集414位父母的数据,关注影响正畸治疗决策过程的动机和障碍。
    结果:收入水平是决定正畸的最重要因素。与中等收入的父母相比,高收入的父母出于审美原因选择正畸治疗的可能性是中等收入的两倍。寻求治疗的主要动机是从牙科专业人士那里获得建议,60%的参与者将其评为最重要的因素。34.5%的受访者认为成本是主要障碍,与高收入父母相比,中等收入父母更倾向于将其视为一个重大障碍。性别动态显示,与父亲相比,母亲对治疗费用的关注增加了48.9%,而父亲对正畸医生声誉的重视程度是母亲的2.105倍。
    结论:收入水平,以及其他社会经济因素和性别动态,对父母关于正畸护理的决定有重大影响。解决这些差异的个性化咨询对于改善患者与从业者之间的沟通和增加治疗的可及性至关重要。
    OBJECTIVE: To investigate the socio-economic and personal factors that impact parental decisions regarding orthodontic treatment for their children in Madinah, Saudi Arabia.
    METHODS: A digital self-administered questionnaire was employed to collect data from 414 parents, focusing on their motivations and barriers that influence their decision-making process regarding orthodontic treatment.
    RESULTS: Income level was the most significant factor in orthodontic decisions. Parents with higher incomes were twice as likely to choose orthodontic treatment for esthetic reasons compared to parents with middle incomes. The main incentive for seeking treatment was getting advice from dental professionals, with 60% of participants rating it as the most important factor. 34.5% of respondents identified cost as the main barrier, with middle-income parents being 151% more inclined to perceive it as a significant barrier compared to high-income parents. Gender dynamics revealed that mothers exhibited 48.9% greater concern regarding treatment costs compared to fathers, whereas fathers placed 2.105 times more importance on the orthodontist\'s reputation than mothers.
    CONCLUSIONS: Income levels, along with other socio-economic factors and gender dynamics, have a significant influence on parental decisions regarding orthodontic care. Personalized consultations that address these variations are crucial for improving communication between patients and practitioners and increasing the accessibility of treatment.
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  • 文章类型: Journal Article
    营养教育是一个长期的过程,应涵盖各种人群。应该特别关注儿童,青少年和他们的父母。这项研究的目的是找出7-12岁小学生的家长对他们在食物和营养领域对学校教育的期望的意见,给学生和他们的父母。这项研究是使用焦点小组访谈(FGI)方法在101名小学生的父母中进行的。它表明,最需要的是与基本理论问题有关的实践活动。虽然父母认为有必要对孩子进行营养教育,教育学生在这方面是感兴趣的只有一些受访者的营养方面是非常重要的。所有家长都希望在学校接受正规的营养教育,但同时,他们不想上课占用孩子太多的时间,由于学校科目已经过多。在营养教育方面包括每个人似乎都是合适的,不管他们宣称对这个问题有什么兴趣。向教师和家长提供一致的教育内容的必要性非常重要,这样他们就可以,以统一的方式,塑造儿童和青少年对食物和营养的态度。
    Nutrition education is a long-term process that should cover various population groups. A special focus should be placed on children, adolescents and their parents. The aim of this research was to find out the opinions of parents of primary school pupils aged 7-12 on their expectations towards school education in the areas of food and nutrition, addressed to both pupils and their parents. The research was conducted among 101 parents of primary school pupils with the use of the Focus Group Interview (FGI) method. It demonstrated that what is most needed are hands-on activities relating to basic theoretical issues. While parents see the need for nutrition education for their children, educating pupils in this area is of interest to only some of the respondents for whom nutrition aspects are quite important. All parents would like formal nutrition education at school, but at the same time, they do not want classes to take up too much of their children\'s time, due to the already excessive number of school subjects. It seems appropriate to include everyone in regard to nutrition education, regardless of their declared interest in this issue. The need for consistent presentation of educational content addressed to teachers and parents is very important, so that they can, in a uniform way, shape the attitudes towards food and nutrition of children and adolescents.
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  • 文章类型: Journal Article
    为了评估基因测试结果是否确定了儿童自闭症的原因,当伴有其他神经发育障碍(NDD)时,包括智力残疾,改变父母如何看待和对待他们的孩子。22名自闭症患者的28名父母(平均年龄:15岁),通常与其他NDD,通过西蒙斯基金会为知识研究提供自闭症研究动力的基因诊断表明从头突变后进行了采访。从头遗传变异的诊断可以改变父母对患有自闭症和其他NDD的后代的看法。父母经常少责备孩子,看到他们的孩子对症状的控制较差,培养了更多的耐心,相应地设定期望。父母对接受基因诊断有复杂的感受,悲伤有时伴随着重新定义的期望。基因诊断可能会改变大家庭成员对孩子的看法,教师,社会服务机构,保险公司,以及更广泛的社区和社会。基因检测还可能减少非洲裔美国人自闭症诊断的延误,拉丁裔和其他孩子。这些数据,第一个检查父母和其他人在接受基因诊断后如何看待自闭症和其他NDD儿童的几个关键方面,强调对多个利益相关者(包括遗传学家,其他医生,遗传咨询师,父母,自闭症患者,社会服务机构,保险公司,政策制定者,和更广泛的公众),研究(包括大家庭成员的观点,保险公司,社会服务机构和教师)和实践(提高对此类儿童基因检测的潜在益处和影响的认识和认识)。
    To assess whether genetic test results identifying the cause of a child\'s autism, when accompanied by other neurodevelopmental disorders (NDD), including intellectual disability, alter how parents perceive and treat their child. 28 parents of 22 individuals with autism (mean age: 15 years), usually with other NDDs, were interviewed after receiving genetic diagnoses indicating a de novo mutation through the Simons Foundation Powering Autism Research for Knowledge study. Diagnosis of a de novo genetic variant can alter parental perceptions of offspring with autism and other NDDs. Parents often blamed their child less, saw their child as less in control of symptoms, and developed more patience, framing expectations accordingly. Parents had mixed feelings about receiving genetic diagnoses, with sadness sometimes accompanying reframed expectations. Genetic diagnoses could change views of the child among extended family members, teachers, social service agencies, insurers, and broader communities and society. Genetic testing might also reduce delays in diagnoses of autism among African American, Latino and other children. These data, the first to examine several critical aspects of how parents and others view children with autism and other NDDs after receiving genetic diagnoses, highlight vital needs for education of multiple stakeholders (including geneticists, other physicians, genetic counselors, parents, individuals with autism, social service agencies, insurers, policymakers, and the broader public), research (to include perspectives of extended family members, insurers, social service agencies and teachers) and practice (to increase recognition and awareness of the potential benefits and effects of genetic testing for such children).
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  • 文章类型: Journal Article
    背景:唇腭裂是影响口腔和相关结构的最常见的发育异常。它们都可以在生理上影响儿童,社会,并在功能上导致父母的心理困扰。本研究旨在了解唇腭裂患者的父母在埃及面临的挑战,阐明他们如何应对这些挑战,并评估他们对未来的担忧。
    方法:对于目前的现象学定性探索,唇裂护理诊所的唇腭裂患者的父母被邀请通过诊所的面对面招募参与研究。制定了有关研究问题的访谈指南,以包括标准化的开放式问题,为结构化讨论提供了框架。在获得参与者的书面知情同意后,对访谈进行录音,然后将收集的数据转录以进行数据分析。
    结果:在12名参与者中,有九个母亲和三个父亲。他们的孩子年龄从1.5岁到19岁不等,从单侧唇裂到完全双侧唇裂,唇腭裂的表现不同。喂养困难是父母遇到的主要挑战之一。同时,害怕受到欺凌是他们孩子未来的主要担忧。注意到持续报告的六个主题:健康与福祉;父母的情绪;父母的态度和行为;财务方面;关系方面;和职业/教育。
    结论:有4个因素直接影响主题,即:裂口的类型,孩子的性别,父母的性别角色,儿童的年龄影响了父母的关切和社会文化信仰和现有支持系统的影响下所面临的挑战。
    Cleft lip and palate are the most common developmental anomalies that affect the mouth and related structures. They can both affect children physiologically, socially, and functionally and lead to psychological distress in their parents. The present study aims to understand the challenges parents of cleft lip and palate patients face in Egypt, elucidate how they cope with these challenges, and assess their concerns for the future.
    For the present phenomenological qualitative exploration, the parents of cleft lip and palate patients attending the cleft care clinic were invited to participate in the study through face-to-face recruitment at the clinic. An interview guide about the research question was developed to include standardized open-ended questions providing a framework for structured discussions. The interviews were audio-recorded after obtaining written informed consent from participants then collected data were transcribed for data analysis.
    Of the 12 participants, there were nine mothers and three fathers. Their children\'s ages ranged from 1.5 years to 19 years and had different presentations of cleft lip and palate from unilateral cleft lip to complete bilateral cleft lip and palate. Feeding difficulty was one of the main challenges encountered by the parents. At the same time, fear of being subjected to bullying was the main concern for the future of their children. Six themes were noted that were continually reported: Health & Wellbeing; Parental emotions; Parental attitudes & behaviors; Financial aspects; Relationship aspects; and Career/Education.
    There were 4 factors that directly impacted the themes, namely: the type of cleft, gender of the child, gender role of the parent, and the age of the child impacted the parental concerns and the challenges faced under the influence of sociocultural beliefs and existing support systems.
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