Extremely premature infants (those born before 28 weeks’ gestational age) are highly immature, requiring months of care at a neonatal intensive care unit (NICU). For parents, their child’s grave medical condition and prolonged hospitalization are stressful and psychologically disruptive. This study aimed at exploring the needs of psychosocial support of parents of extremely premature infants, and how the NICU as an organization and its staff meets or fails to meet these needs. Sixteen open-ended interviews were conducted with 27 parents after their infant’s discharge from the NICU. Inductive content analysis was performed. Four themes were identified: Emotional support (with subthemes Empathic treatment by staff, Other parents as a unique source of support, Unclear roles of the various professions); Feeling able to trust the health care provider; Support in balancing time spent with the infant and other responsibilities; Privacy. Parents of extremely premature infants needed various forms of emotional support at the NICU, including support from staff, professional psychological help and/or companionship with other patients’ parents. Parents were highly variable in their desire to discuss their emotional state with staff. The respective roles of nursing staff, social workers and psychologists in supporting parents emotionally and identifying particularly vulnerable parents appeared unclear. Parents also needed to be able to maintain a solid sense of trust in the NICU and its staff. Poor communication with and among staff, partly due to staff discontinuity, damaged trust. Parents struggled with perceived pressure from staff to be at the hospital more than they could manage and with the limited privacy of the NICU. The complex and individual psychosocial needs of parents of extremely preterm infants present many challenges for the NICU and its staff. Increasing staffing and improving nurses’ competence in addressing psychosocial aspects of neonatal care would help both nurses and families. Clarifying the roles of different professions in supporting parents and developing their teamwork would lessen the burden on nurses. Communicating with parents about their needs and informing them early in their NICU stay about available support would be essential in helping them cope with their infant’s hospitalization.

中文翻译：

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新生儿重症监护中对极早产婴儿父母的社会心理支持：定性访谈研究

极早的婴儿（胎龄在28周之前出生）非常不成熟，需要在新生儿重症监护病房（NICU）进行数月的照料。对于父母来说，他们孩子的严重病情和长期住院治疗会给他们带来压力，并在心理上造成破坏。这项研究旨在探讨极早产婴儿父母的社会心理支持需求，以及NICU作为一个组织及其员工如何满足或不满足这些需求。在27名父母从新生儿重症监护病房（NICU）出院后对他们进行了16次开放式访谈。进行归纳含量分析。确定了四个主题：情感支持（子主题为工作人员的同情对待，其他父母作为唯一的支持来源，各职业的角色不明确）；能够信任医疗保健提供者；支持平衡与婴儿和其他职责所花费的时间；隐私。极早产婴儿的父母需要在新生儿重症监护病房获得各种形式的情感支持，包括员工的支持，专业的心理帮助和/或与其他患者父母的陪伴。父母与员工讨论自己的情绪状态的愿望变化很大。护理人员，社会工作者和心理学家在情感上支持父母和确定特别脆弱的父母方面的各自作用似乎还不清楚。父母还需要能够对新生儿重症监护病房及其工作人员保持牢固的信任感。与员工之间的沟通不畅，部分原因是员工间断，信任受损。父母在员工的压力之下难以忍受，他们无法在医院接受更多的医疗服务，并且NICU的隐私受到限制。极早产婴儿父母的复杂和个性化的社会心理需求对NICU及其工作人员提出了许多挑战。解决新生儿护理的社会心理方面的人员增加和护士能力的提高将对护士和家庭都有帮助。明确不同职业在支持父母和发展团队合作中的作用将减轻护士的负担。与父母沟通，了解他们的需求，并在他们入住新生儿重症监护病房早期告知他们可获得的支持，对于帮助他们应对婴儿的住院治疗至关重要。极早产婴儿父母的复杂和个性化的社会心理需求对NICU及其工作人员提出了许多挑战。解决新生儿护理的社会心理方面的人员增加和护士能力的提高将对护士和家庭都有帮助。明确不同职业在支持父母和发展团队合作方面的作用将减轻护士的负担。与父母沟通，了解他们的需求，并在他们入住新生儿重症监护病房早期告知他们可获得的支持，对于帮助他们应对婴儿的住院治疗至关重要。极早产婴儿父母的复杂和个性化的社会心理需求对NICU及其工作人员提出了许多挑战。解决新生儿护理的社会心理方面的人员增加和护士能力的提高将对护士和家庭都有帮助。明确不同职业在支持父母和发展团队合作方面的作用将减轻护士的负担。与父母沟通，了解他们的需求，并在他们入住新生儿重症监护病房早期告知他们可获得的支持，对于帮助他们应对婴儿的住院治疗至关重要。明确不同职业在支持父母和发展团队合作方面的作用将减轻护士的负担。与父母沟通，了解他们的需求，并在他们入住新生儿重症监护病房早期告知他们可获得的支持，对于帮助他们应对婴儿的住院治疗至关重要。明确不同职业在支持父母和发展团队合作方面的作用将减轻护士的负担。与父母沟通，了解他们的需求，并在他们入住新生儿重症监护病房早期告知他们可获得的支持，对于帮助他们应对婴儿的住院治疗至关重要。