Experiences of Bowel Self-Management in Adults with Spina Bifida: A Qualitative Descriptive Study
脊柱裂成人肠道自我管理的经验:一项定性描述性研究
基本信息
- 批准号:10607289
- 负责人:
- 金额:$ 4.13万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2023
- 资助国家:美国
- 起止时间:2023-08-01 至 2024-12-31
- 项目状态:已结题
- 来源:
- 关键词:AddressAdherenceAdultAffectAreaBirthCaregiversCaringChildChildhoodClinicComplexConstipationDataDemographic SurveyDevelopmentDiagnosisEquityFaceFacebookFecal IncontinenceFecesFeelingFissure in AnoFoundationsFunctional disorderGastrointestinal tract structureGenetic TranscriptionGoalsGrantHealthHealth PersonnelHealth PromotionHemorrhoidsHispanicHispanic PopulationsIndianaIndividualInterventionInterviewIntestinesKnowledgeLearningLeftLengthLife StyleLinkLiteratureManuscriptsMeasuresMethodsMotorNamesNauseaNeural Tube DefectsNursesOperative Surgical ProceduresOutcomePainPaperParticipantPediatric HospitalsPopulationPreparationPreventionPublicationsQuality of CareQuality of lifeResearchRiskSamplingScientistSelf ManagementSensoryShameShunt DeviceSkinSocial isolationSolidSpecialistSpinal DysraphismStrategic PlanningTestingTimeTrainingUncertaintyUnderinsuredUniversitiesUrinary IncontinenceUrinary tract infectionVariantVulnerable PopulationsWorkWritingdesigndigitaldisabilityelectronic consentexhaustionexperiencegastrointestinal symptomhigh riskimprovedinterestlenspatient orientedpharmacologicprogramsrecruitsocialtherapy developmentvirtual
项目摘要
Project Summary/ Abstract
Spina bifida (SB) is the most common congenital neural tube defect in the US, occurring in more than 1,400
births each year and resulting in lifelong disability. A highly disabling aspect of spina bifida is neurogenic bowel
dysfunction, which requires lifelong self-management (SM) independently or together with a caregiver. Bowel
SM in adults with SB is incredibly complex, making it difficult to achieve sustained fecal continence. There is
little support available for this population attempting bowel SM and this area is remarkably under researched
even though unmanaged bowel dysfunction leads to poor outcomes such as fecal incontinence, constipation,
urinary incontinence, urinary tract infections, shunt malfunctions, skin breakdown, hemorrhoids, anal fissures,
loss of social and work opportunities, and feelings of shame, helplessness, and social isolation. Without proper
bowel SM and support from appropriate clinicians, neurogenic bowel dysfunction has a significant and
devastating impact on quality of life. There is a critical need to address bowel SM in adults with SB, as this area
of SM is one of the most important challenges associated with a spina bifida diagnosis. This is especially true
for the Hispanic population and the underinsured who are at increased risk for poor bowel SM-related
outcomes. The purpose of this study is to describe the experiences of adults with SB engaging in bowel SM
from their perspectives. Thus, the specific aim is to describe the bowel SM experiences of adults with SB and
the research questions are: 1) What are the challenges adults with SB face when engaging in bowel SM? 2)
What bowel SM strategies do adults with SB use? 3) What are the bowel SM experiences of underinsured and
Hispanic adults with SB? A qualitative descriptive design using a sample of 20-30 English and Spanish
speaking adults with SB will be recruited through the
Riley Adult Spina Bifida Clinic at Indiana University Health
Riley Hospital for Children
, the Spina Bifida Association, and the Bowel Management for Spina Bifida Facebook
group using both paper and digital fliers. All materials will be available in both English and Spanish. Interested
participants will be directed to an online link to learn more about the study, provide consent electronically, and
fill out a demographic survey. I will contact participants to set up a virtual interview with an interpreter present
for Spanish speaking participants. Interviews will be recorded, transcribed, and analyzed using Sandelowski’s
method for data preparation and analysis. Results of this study will guide future research, including the
development and testing of equitable patient-centered interventions to improve bowel SM and quality of life in
adults with SB. I have worked closely with her sponsors to develop a rigorous training plan that will provide a
solid foundation for her dissertation and long-term professional development as a nurse scientist. Her training
goals are to: 1) develop in-depth knowledge of bowel SM in adults with SB; 2) gain expertise in qualitative
descriptive methods; 3) gain expertise in grant writing; 4) present research findings and engage in professional
development and networking activities; and 5) submit manuscripts for publication.
项目总结/摘要
脊柱裂(SB)是美国最常见的先天性神经管缺陷,
每年都有新生儿出生,并导致终身残疾。脊柱裂的一个高度致残的方面是神经源性肠
功能障碍,这需要终身自我管理(SM)独立或与照顾者一起。肠
成人SB患者的SM非常复杂,难以实现持续的粪便排泄。有
对尝试肠道SM的这一人群几乎没有支持,这一领域的研究明显不足
即使未管理的肠功能障碍导致不良结果,例如大便失禁,便秘,
尿失禁、尿路感染、分流器故障、皮肤破裂、痔疮、肛裂,
丧失社会和工作机会,感到羞耻、无助和社会孤立。没有适当
肠SM和适当的临床医生的支持,神经源性肠功能障碍具有显著的,
对生活质量的毁灭性影响。目前迫切需要解决成人SB患者的肠道SM,因为这一领域
SM的诊断是脊柱裂诊断中最重要的挑战之一。尤其如此
对于西班牙裔人口和保险不足的人,他们的肠道SM相关不良风险增加,
结果。本研究的目的是描述成人SB从事肠道SM的经验
从他们的角度来看。因此,具体的目的是描述成人SB患者的肠道SM经历,
研究问题是:1)当从事肠道SM时,SB成年人面临什么样的挑战?(二)
成人SB患者使用什么样的肠道SM策略?3)什么是肠道SM的经验,保险不足,
西班牙成年人SB?定性描述性设计,使用20-30名英语和西班牙语样本
与SB交谈的成年人将通过
印第安纳州大学健康中心莱利成人脊柱裂诊所
莱利儿童医院
,脊柱裂协会,和脊柱裂Facebook的肠道管理
使用纸质和数字传单的团体。所有材料都将以英文和西班牙文提供。兴趣
参与者将被引导至在线链接,以了解有关研究的更多信息,以电子方式提供知情同意书,
填写一份人口统计调查表我将联系参与者,安排一个有口译员在场的虚拟面试
讲西班牙语的与会者。访谈将被记录,转录,并使用Sandelowski的分析
数据准备和分析方法。这项研究的结果将指导未来的研究,包括
开发和测试公平的以患者为中心的干预措施,以改善肠道SM和生活质量,
我已经与她的赞助商密切合作,制定了一个严格的培训计划,将提供一个
为她的论文和作为护理科学家的长期专业发展奠定了坚实的基础。她的训练
目标是:1)深入了解SB成人的肠道SM; 2)获得定性分析的专业知识。
描述性方法; 3)获得拨款写作的专业知识; 4)展示研究成果并从事专业工作
发展和联网活动; 5)提交稿件供出版。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
数据更新时间:{{ journalArticles.updateTime }}
{{
item.title }}
{{ item.translation_title }}
- DOI:
{{ item.doi }} - 发表时间:
{{ item.publish_year }} - 期刊:
- 影响因子:{{ item.factor }}
- 作者:
{{ item.authors }} - 通讯作者:
{{ item.author }}
数据更新时间:{{ journalArticles.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ monograph.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ sciAawards.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ conferencePapers.updateTime }}
{{ item.title }}
- 作者:
{{ item.author }}
数据更新时间:{{ patent.updateTime }}
Michelle Lynn Mravec其他文献
Michelle Lynn Mravec的其他文献
{{
item.title }}
{{ item.translation_title }}
- DOI:
{{ item.doi }} - 发表时间:
{{ item.publish_year }} - 期刊:
- 影响因子:{{ item.factor }}
- 作者:
{{ item.authors }} - 通讯作者:
{{ item.author }}
相似海外基金
Structural Racism, Pharmacy Closures and Disparities in Medication Adherence Among Older Adult Medicare Part-D Beneficiaries
结构性种族主义、药房关闭以及老年人医疗保险 D 部分受益人的药物依从性差异
- 批准号:
10568717 - 财政年份:2023
- 资助金额:
$ 4.13万 - 项目类别:
Medication Adherence and Cardio-Metabolic Control Indicators among Adult American Indians Receiving Tribal Health Services
接受部落卫生服务的成年美洲印第安人的药物依从性和心脏代谢控制指标
- 批准号:
10419967 - 财政年份:2022
- 资助金额:
$ 4.13万 - 项目类别:
Medication Adherence and Cardio-Metabolic Control Indicators among Adult American Indians Receiving Tribal Health Services
接受部落卫生服务的成年美洲印第安人的药物依从性和心脏代谢控制指标
- 批准号:
10592441 - 财政年份:2022
- 资助金额:
$ 4.13万 - 项目类别:
Leveraging Technology to Improve Medication Adherence in Adolescent and Young Adult Kidney or Liver Transplant Recipients
利用技术提高青少年和年轻肾移植或肝移植受者的药物依从性
- 批准号:
10369750 - 财政年份:2021
- 资助金额:
$ 4.13万 - 项目类别:
Leveraging Technology to Improve Medication Adherence in Adolescent and Young Adult Kidney or Liver Transplant Recipients
利用技术提高青少年和年轻肾移植或肝移植受者的药物依从性
- 批准号:
10633248 - 财政年份:2021
- 资助金额:
$ 4.13万 - 项目类别:
Leveraging Technology to Improve Medication Adherence in Adolescent and Young Adult Kidney or Liver Transplant Recipients
利用技术提高青少年和年轻肾移植或肝移植受者的药物依从性
- 批准号:
10487516 - 财政年份:2021
- 资助金额:
$ 4.13万 - 项目类别:
Mhealth for Pre-exposure Prophylaxis Adherence by Young Adult MSM
Mhealth 促进年轻 MSM 遵守暴露前预防
- 批准号:
10228564 - 财政年份:2018
- 资助金额:
$ 4.13万 - 项目类别:
Mhealth for Pre-exposure Prophylaxis Adherence by Young Adult MSM
Mhealth 促进年轻 MSM 遵守暴露前预防
- 批准号:
9347041 - 财政年份:2017
- 资助金额:
$ 4.13万 - 项目类别:
Mindfulness training with HIV-positive youth and adult family members to improve treatment adherence
对艾滋病毒呈阳性的青少年和成年家庭成员进行正念训练,以提高治疗依从性
- 批准号:
9480702 - 财政年份:2016
- 资助金额:
$ 4.13万 - 项目类别:
Mindfulness training with HIV-positive youth and adult family members to improve treatment adherence
对艾滋病毒呈阳性的青少年和成年家庭成员进行正念训练,以提高治疗依从性
- 批准号:
9906853 - 财政年份:2016
- 资助金额:
$ 4.13万 - 项目类别: