1 University of Rochester, NY, USA.
2 University of Rochester Medical Center, NY, USA.
J Fam Nurs. 2019 May;25(2):314-347. doi: 10.1177/1074840719847185. Epub 2019 May 13.
Individuals with fetal alcohol spectrum disorders (FASD) have high rates of health care service utilization. It is vital that health care professionals understand FASD and associated family experiences to strengthen their ability to respond to family needs and tailor family-focused interventions. This study included 24 foster and adoptive parents of children and adults (aged 3-33 years) with FASD. Data were collected via individual interviews and focus groups and analyzed thematically. Consistent with a developmental psychopathology perspective, parents' experiences interacted with the individual (with FASD), family, and broader systems ecological levels. Parents undertook protective actions in an attempt to prevent secondary conditions, support their child and family, and mitigate systems barriers. They also experienced stressors at each level, and stress was increased by protective actions. The overall parenting experience was fueled by a protective parenting attitude. Findings can strengthen family-focused care practices with individuals with FASD and their families and inform novel family interventions.
患有胎儿酒精谱系障碍(FASD)的个体对医疗保健服务的利用率很高。医疗保健专业人员了解 FASD 及其相关家庭体验至关重要,这可以增强他们响应家庭需求和调整以家庭为中心的干预措施的能力。本研究包括 24 名寄养和收养患有 FASD 的儿童和成人(年龄 3-33 岁)的父母。通过个人访谈和焦点小组收集数据,并进行主题分析。符合发展心理病理学的观点,父母的经验与个体(患有 FASD)、家庭和更广泛的系统生态水平相互作用。父母采取保护措施,试图预防继发性疾病,支持他们的孩子和家庭,并减轻系统障碍。他们还在各个层面经历压力源,而保护措施增加了压力。整体养育经验受到保护养育态度的推动。研究结果可以加强针对 FASD 个体及其家庭的以家庭为中心的护理实践,并为新的家庭干预措施提供信息。