Whitmore Kim E, Snethen Julia
Assistant Professor, School of Nursing, University of Wisconsin-Madison, Madison, WI, USA.
Associate Professor, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
J Spec Pediatr Nurs. 2018 Jul;23(3):e12217. doi: 10.1111/jspn.12217. Epub 2018 Apr 26.
Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program.
Twenty-two parents who had a child with special healthcare needs who attended a Midwestern respite care program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyze the data.
Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program "fit"; and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family.
Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.
有特殊医疗需求儿童的父母可能会因持续照顾孩子的需求而不堪重负。照顾有特殊医疗需求的儿童通常具有挑战性，在许多情况下需要专业培训。因此，父母很难找到有资质的照顾者，让他们能从全天候照顾孩子的状态中解脱出来。喘息服务项目旨在为照顾者提供急需的临时休息机会。本研究的目的是考察父母对使用喘息服务项目的看法。
22位有特殊医疗需求儿童且参加了中西部喘息服务项目的父母填写了一份参与者特征表格，内容涉及他们照顾有特殊医疗需求孩子的经历以及使用喘息服务的情况。父母们参加了一个焦点小组（N = 4），以探讨他们对参与喘息服务的看法和经历。采用多阶段主题分析和描述性统计方法对数据进行分析。
数据中出现的主题包括：持续的照顾需求；压力极大；喘息是一份礼物，我们能得到休息；喘息服务项目“适配”；以及喘息对他们来说也是特殊时光。父母们强调了喘息服务对他们婚姻关系的益处，以及对有特殊医疗需求孩子及其兄弟姐妹的益处。父母们还描述了根据家庭独特需求定制喘息服务的重要性。
护士和其他医疗专业人员在满足有特殊医疗需求儿童父母未得到满足的喘息服务需求方面发挥着关键作用，他们要识别未满足的需求，并将家庭转介至能满足其独特需求的合适服务机构。医疗专业人员还可以参与现有项目的志愿服务，以帮助扩大喘息服务的可及性，并增加有充分培训、父母可信赖其能满足孩子复杂医疗需求的喘息服务提供者的数量。
