The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24 years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20–24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families.

中文翻译：

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未满足的医疗保健和家庭支持服务的需求评估：特拉华州患有自闭症谱系障碍的儿童和青少年的照顾者调查

该研究旨在从美国特拉华州患有自闭症谱系障碍 (ASD) 的儿童和青少年的家庭收集数据，以了解他们在获得儿童保健和家庭支持服务方面的持续需求和挑战。我们使用全州需求评估调查分析了 263 名 3 至 24 岁患有 ASD 的儿童和青少年的照顾者的反应。超过 50% 的护理人员表示在儿童/青少年医疗保健服务和家庭支持服务方面的需求未得到满足。24% 至 38% 的看护人表示对医疗保健服务的需求未得到满足，例如社交技能培训、语言治疗、行为干预和孩子的职业治疗，20-24% 的看护人表示需要家庭支持服务，例如暂托护理、父母/兄弟姐妹支持小组、咨询和保姆支持。此外，先前接受的早期干预的数量、获得医疗保健服务的限制以及对家庭支持服务的未满足需求显着预测了儿童/青少年未满足的医疗保健需求。更高的 ASD 严重程度和难以获得儿童/青少年医疗保健服务预示着参与者在日常生活活动中对照顾者的功能依赖。总之，这些发现要求设计以家庭为中心的整体干预措施，以满足患有 ASD 的儿童和青少年及其家庭的需求。s 日常生活活动对照顾者的功能依赖。总之，这些发现要求设计以家庭为中心的整体干预措施，以满足患有 ASD 的儿童和青少年及其家庭的需求。s 日常生活活动对照顾者的功能依赖。总之，这些发现要求设计以家庭为中心的整体干预措施，以满足患有 ASD 的儿童和青少年及其家庭的需求。