Institute of Health and Society, UCLouvain, 30 Clos Chapelle-aux-Champs, 1200 Brussels, Belgium.
Family and Orthopedagogy Research Unit, KULeuven, Belgium.
J Pediatr Nurs. 2023 Sep-Oct;72:e114-e121. doi: 10.1016/j.pedn.2023.06.017. Epub 2023 Jul 5.
Parents of children and youth with special healthcare needs (PCHN) are under particular pressure that can lead to physical, emotional, and social difficulties. Respite care services provide temporary relief for PCHNs from their caregiving responsibilities. Several studies have examined why PCHNs do not make greater use of these potentially supportive services, but existing studies do not focus on the psychological or subjective aspects of this process.
The present study aims to understand the reasons why PCHNs, mothers in particular, (do not) use these services, with the underlying goal of understanding what parents' needs and expectations are regarding these services.
The present study is based on a qualitative thematic analysis of the experience of respite services of 14 Belgian mothers PCHN.
The results showed that PCHNs regularly exceed their limits and are often on the verge of physical and emotional exhaustion and that respite services could be a way to meet their needs. However, issues of availability and accessibility impede equal access to these services.
These findings highlight the need for a comprehensive approach to respite care, by including PCHNs in the process as early as possible, not normalizing exhaustion as the trigger, and not focusing solely on the needs of children when the need arises.
Increasing the flexibility of the services, providing a reassuring environment, facilitating administrative procedures, and providing information about these services as early as possible appear to be priorities for facilitating the use of respite care services.
有特殊医疗需求的儿童和青少年的父母（PCHN）承受着特殊的压力，这可能导致他们在身体、情感和社交方面遇到困难。临时护理服务为 PCHN 提供了暂时缓解其照顾责任的机会。有几项研究探讨了为什么 PCHN 没有更多地利用这些潜在的支持性服务，但现有研究并没有关注这一过程的心理或主观方面。
本研究旨在了解 PCHN（尤其是母亲）不使用这些服务的原因，以便深入了解父母对这些服务的需求和期望。
本研究基于对 14 名比利时 PCHN 母亲体验临时护理服务的定性主题分析。
结果表明，PCHN 经常超出自己的极限，经常处于身体和情感疲惫的边缘，而临时护理服务可能是满足他们需求的一种方式。然而，可用性和可及性问题阻碍了他们平等获得这些服务。
这些发现强调了需要采取全面的临时护理方法，尽早让 PCHN 参与到这一过程中，不要将疲惫视为触发因素，也不要仅在需要时只关注孩子的需求。
增加服务的灵活性、提供一个令人安心的环境、简化行政程序以及尽早提供这些服务的信息，这些似乎是促进临时护理服务使用的优先事项。
