Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indianapolis, IN, USA.
Center for Pediatric and Adolescent Comparative Effectiveness Research, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA.
J Pediatr Urol. 2023 Apr;19(2):181-189. doi: 10.1016/j.jpurol.2022.10.027. Epub 2022 Oct 22.
Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient-centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal-setting tool to guide incontinence management (Figure). Our aim was to understand patient experiences of UI and FI, and what goals should be included in the tool.
We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>=18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design researchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached.
Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/unpleasant incontinence management, (4) inconvenient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identified six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, independence, interruptions at school and social/friends. Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas (FI).
Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals.
Children with SB experience incontinence as distressing and unpredictable. Incontinence management can be challenging and unreliable. Patient-centered continence goals cluster in domains, indicating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.
尽管患有脊髓脊膜膨出症（SB）的儿童及其家庭在尿失禁和粪便失禁（UI 和 FI）方面面临着重大且已知的挑战，但很少有研究确定以患者为中心的措施和方法来评估这些问题。本研究代表了一项更大研究的第一阶段，旨在开发以患者为中心的目标设定工具来指导失禁管理（图）。我们的目标是了解 UI 和 FI 的患者体验，以及应该在工具中包含哪些目标。
我们使用定性研究方法与以人为中心的设计方法相结合。我们在诊所和网上招募了患有 SB（8-17 岁）的儿童和患有 SB（8-17 岁）的儿童的父母（>=18 岁）。四位经验丰富的设计研究人员使用亲和图、小组分析和建模活动（思维导图、挑战图、体验图）对在线活动进行分析。招募和主题定性分析一直持续到达到饱和。
17 名 SB 患儿参与了研究（9 名女性，12 名分流，13 名使用膀胱导管，6 名使用 Malone 顺行控便灌肠，中位年龄：15 岁）。15 名父母参与了研究（13 名母亲/2 名父亲，中位年龄：42 岁），包括 6 对母子。分别确定了 UI 和 FI 体验的 5 个主要主题：（1）失禁对情绪的负面影响，（2）失禁的不可预测性，（3）失禁管理的挑战性/不令人愉快，（4）不便/不可靠的失禁管理，（5）UI 管理有不愉快的并发症，FI 给父母带来了很多责任。我们确定了 UI 的 6 个目标领域和 FI 的 5 个目标领域。有 4 个重叠的领域包括：意外、独立性、在学校的中断和社交/朋友。独特的领域包括：尿路感染（UI）、导管（UI）和灌肠（FI）。
我们的研究结果提高了我们对 SB 患儿失禁相关的儿童和父母体验以及潜在的控便目标的理解。
患有 SB 的儿童将失禁视为痛苦和不可预测的。失禁管理可能具有挑战性且不可靠。以患者为中心的控便目标聚类在各个领域，表明失禁如何与其他生活领域相互交织，并为在目标选择工具中构建控便目标提供了潜在方法。
