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Lived experiences of Maltese parents of young children born with biological risks for intellectual disability

机译:生活在智力残疾的生理风险的幼儿的马耳他父母的生活经历

摘要

Parents of children born with risks for intellectual disability (ID) report emotional upheaval and greater support needs compared to those raising a typically developing child. Exploring these parents’ needs and experiences is critical for the provision of early intervention and/or paediatric services that benefit the whole family. Consequently, this study aimed to explore the experiences and needs of Maltese parents of young children born with biological risks for ID, during the first five years of life. It adopted a cross-sectional qualitative design, using Interpretative Phenomenological Analysis (Smith et al., 2009). Four groups of parents, (N=37) depending on their children’s age (0;6, 2;0, 3;6 and 5;0 years) were interviewed using a semi-structured interview guide. Six super-ordinate themes were identified: ‘experiencing is true understanding’, ‘family functioning’, ‘info-emotional cycle’, ‘micro-system sociological framework’, ‘service-needs-resource cycle’ and ‘experiential challenges’. Socio-cultural influences have affected parents’ interpretations of their experiences and needs. Moreover, parents reported that raising an ‘at risk’ child had an impact on their daily life as a family, as a couple and on their individual lifeworld. Maltese parents felt that their needs were not given their due importance by policymakers and professionals. This warrants the incorporation of parents’ needs, together with the needs perceived for their child, in the provision of early intervention and/or paediatric services in Malta. This study also identified parents’ experiential differences as the child grow, highlighting the need for regular re-evaluation of parents’ needs. Recommendations for changes in Maltese family policy, service provision and education of professionals were proposed to reduce parents’ stresses.
机译:与抚养通常发育的孩子相比,有智力障碍(ID)风险的孩子的父母报告说情绪上发生了动荡,抚养需求也更大。探索这些父母的需求和经验对于提供有利于整个家庭的早期干预和/或儿科服务至关重要。因此,本研究旨在探讨在出生后头五年内患有ID生物学风险的幼年马耳他父母的经验和需求。它采用了解释性现象学分析的横断面定性设计(Smith等,2009)。根据半孩子的年龄(0; 6、2; 0、3; 6和5; 0岁),对四组父母(N = 37)进行了访谈。确定了六个上级主题:“体验才是真正的理解”,“家庭运作”,“信息情感周期”,“微系统社会学框架”,“服务需求资源循环”和“体验挑战”。社会文化的影响影响了父母对其经历和需求的理解。此外,父母报告说,抚养一个“有风险”的孩子会影响他们的家庭,夫妻和个人生活。马耳他父母认为,政策制定者和专业人员没有给予他们应有的重视。这保证了在马耳他提供早期干预和/或儿科服务时,应将父母的需求以及对孩子的感知纳入考虑。这项研究还确定了父母随着孩子的成长而经历的差异,强调了需要定期重新评估父母的需求。提出了改变马耳他家庭政策,提供服务和专业人员教育的建议,以减轻父母的压力。

著录项

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    Azzopardi Elayne;

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  • 年度 2013
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  • 原文格式 PDF
  • 正文语种 English
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