Family partnership and community engagement to support AYA adaptation in serious pediatric illness

在美国，近20万儿童和青少年面临着有一个兄弟姐妹的挑战。 严重的、限制生命的疾病，许多人将失去亲人。similar面对特定的生理，心理， 和社会风险，包括焦虑，抑郁，药物滥用，学业成绩的关注， 情绪困扰当重病儿童的生命面临巨大危险或患病时， 管理使家庭时间和日常事务变得紧张。特别是青少年兄弟姐妹可能会选择从事有风险的 行为，退出同龄人和家庭关系，并拒绝与父母分享他们的担忧， 感觉已经不堪重负。当家庭内部的社会决定因素增加时， 家庭的社会生态加剧了风险，或抑制了复原力的来源，从而使差距永久化。发展 以家庭为中心的干预措施，以支持这些兄弟姐妹在儿科姑息治疗，并减少他们的 心理社会和健康问题，我们需要确定严重疾病的影响，并了解 家庭面临的需求之间的关系，他们如何沟通，以及他们如何适应。而家庭 沟通对家庭日常运作至关重要，并与儿童适应有关，但存在严重差距。 了解其对儿科姑息治疗中兄弟姐妹适应的影响。尽管家庭的重要性 在家庭沟通方面，支持家庭沟通的干预措施很少。因此，本研究的具体目的 家庭需求、家庭沟通与兄弟姐妹间适应的关系 确定家庭沟通的需求，挑战和兄弟姐妹之间的偏好 和重病儿童的父母;并制定以家庭为基础的干预措施， 兄弟姐妹患重病的青少年。这项研究符合NINR发展科学的优先事项， 公平的姑息治疗和康复，并将为一项更大的研究提供基础数据，以测试一个家庭- 集中干预。了解严重儿科疾病中家庭沟通的动态性质， 从兄弟姐妹和父母的角度来看，提供了防止他们长期痛苦的机会。

Nearly 200,000 children and adolescents in the US face the challenge of having a brother or sister with a serious, life-limiting illness and many will become bereaved. Siblings face particular physical, psychological, and social risks including anxiety, depression, substance abuse, academic performance concerns, and emotional distress. These risks increase when the seriously ill child’s life is at great risk or when illness management strains family time and routines. Adolescent siblings in particular may opt to engage in risky behavior, withdraw from peer and family relationships, and decline sharing concerns with parents whom they perceive already overburdened. Risks for the family unit may also increase when social determinants within the family social ecology exacerbate risk or inhibit sources of resilience, perpetuating disparities. To develop family-focused interventions to support these siblings during pediatric palliative care and reduce their psychosocial and health concerns, we need to determine the impact of serious illness and understand the relationships among the demands families face, how they communicate, and how they adapt. While family communication is critical to everyday family functioning and is linked to child adaptation, there is a critical gap in understanding its impact on sibling adaptation in pediatric palliative care. Despite the significance of family communication, few interventions exist to support family communication. Thus, the specific aims of this study are: to examine the relationship among family demands, family communication, and adaptation among siblings of seriously ill children; to identify family communication needs, challenges, and preferences among siblings and parents of seriously ill children; and to develop a family-based intervention to improve adaptation of adolescents whose siblings are seriously ill. This study aligns with NINR priorities of developing the science of equitable palliative care and caregiving and will provide foundational data for a larger study to test a family- focused intervention. Understanding the dynamic nature of family communication in serious pediatric illness, from perspectives of siblings and parents, provides opportunities to prevent their long-term distress.