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兄弟或姐妹患有 严重的、限制生命的疾病，许多人将失去亲人。兄弟姐妹面临着特殊的生理、心理、 和社交风险，包括焦虑、抑郁、滥用药物、学习成绩担忧，以及 精神上的痛苦。当重病儿童的生命处于极大危险或患病时，这些风险就会增加 管理层让家庭时间和日常事务变得紧张。尤其是青春期的兄弟姐妹可能会选择从事有风险的 行为，远离同伴和家庭关系，拒绝与他们的父母分享担忧 感觉已经不堪重负。家庭单位的风险也可能增加，当社会决定因素在 家庭社会生态加剧风险或抑制韧性来源，使差异永久化。发展，发展 以家庭为重点的干预措施，在儿科姑息护理期间支持这些兄弟姐妹，并减少他们的 心理和健康问题，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。而家人 沟通对日常家庭功能至关重要，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。尽管家庭很重要 在家庭沟通方面，支持家庭沟通的干预措施很少。因此，这项研究的具体目的是 是：研究家庭需求、家庭沟通和兄弟姐妹之间的适应之间的关系 了解重病儿童的家庭沟通需求、挑战和兄弟姐妹之间的偏好 和重病儿童的父母；以及制定以家庭为基础的干预措施，以改善对 兄弟姐妹身患重病的青少年。这项研究与NINR发展科学的优先事项一致 公平的姑息治疗和护理，将为更大规模的研究提供基础数据，以测试一个家庭- 有针对性的干预。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.