{"title":"Getting to the bottom of why children with spina bifida use the emergency department: A qualitative analysis of parent and stakeholder perspectives","authors":"","doi":"10.1016/j.jpurol.2024.05.007","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><p><span>Children with Spina Bifida (SB) have considerable </span>healthcare utilization<span>, including Emergency Department use (EDU). We aimed to elicit reasons for EDU using qualitative analysis of interviews with both patient-caregiver dyads and stakeholders.</span></p></div><div><h3>Methods</h3><p>A cohort of children with SB followed at our institution between 2016 and 2020 was identified and patient and clinical characteristics abstracted. Purposeful sampling by age and degree of past EDU was performed. Semi-structured interviews of dyads were performed using iteratively revised interview guides. Spanish-language interviews were conducted by a native Spanish speaker and transcripts professionally translated. Supplemental interviews with stakeholders, namely knowledgeable healthcare professionals, were also conducted. A qualitative framework approach was used for analysis, including open followed by closed independent coding with calculation of inter-rater reliability. A final interpretation of coding reports assessing convergence, divergence, and variation in themes across participant characteristics.</p></div><div><h3>Results</h3><p>116 families (4 Spanish-speaking) and 7 stakeholders were interviewed. Sampling yielded a heterogenous cohort for EDU (56% with 0–10, 44% with >10 visits) and age (25% 0–4, 44% 5–11, 31% > 11 years). IRR was optimal (κ = 0.9). Themes in perceived reasons for EDU were 1) desire for “one-stop-shop” care, 2) an emergent medical problem, 3) providers’ instructions, 4) negative past healthcare experience, 5) intrinsic caregiver moderators, and 6) temporospatial influences. Themes 1, 2, and 5 predominated in dyads, whereas themes 6, 3, and 5 were most common in stakeholders. Stakeholders focused largely on negative institutional and patient characteristics. Among dyads only, theme #1 was disproportionately emphasized by Spanish-speaking patients.</p></div><div><h3>Discussion</h3><p>Families desired access to coordinated expert care, testing and imaging. The ED offers this for children with SB, regardless of clinical acuity. This may be especially valued by families with inherent challenges to navigating the healthcare system. Negative experiences in community clinical settings, healthcare provider recommendations and intrinsic parental factors were themes that seemed to contribute to seeking this “one-stop-shop” type of care. Care coordination may reduce ED reliance, but themes for the interviews suggest a systems-based efforts should weave in the community care setting.</p></div><div><h3>Conclusions</h3><p>For both stakeholders and caregivers, the ED represented a valued form of immediate access to multispecialty, expert care and testing in the context of perceived lack of timely, coordinated outpatient care. This may be moderated by intrinsic caregiver factors and negative past experiences. Although stakeholders discussed ideas that fit into patient-caregiver themes, the also uniquely focused on systems-based and patient-caregiver limitations.</p></div>","PeriodicalId":16747,"journal":{"name":"Journal of Pediatric Urology","volume":null,"pages":null},"PeriodicalIF":2.0000,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Pediatric Urology","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1477513124002651","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PEDIATRICS","Score":null,"Total":0}
引用次数: 0
Abstract
Background
Children with Spina Bifida (SB) have considerable healthcare utilization, including Emergency Department use (EDU). We aimed to elicit reasons for EDU using qualitative analysis of interviews with both patient-caregiver dyads and stakeholders.
Methods
A cohort of children with SB followed at our institution between 2016 and 2020 was identified and patient and clinical characteristics abstracted. Purposeful sampling by age and degree of past EDU was performed. Semi-structured interviews of dyads were performed using iteratively revised interview guides. Spanish-language interviews were conducted by a native Spanish speaker and transcripts professionally translated. Supplemental interviews with stakeholders, namely knowledgeable healthcare professionals, were also conducted. A qualitative framework approach was used for analysis, including open followed by closed independent coding with calculation of inter-rater reliability. A final interpretation of coding reports assessing convergence, divergence, and variation in themes across participant characteristics.
Results
116 families (4 Spanish-speaking) and 7 stakeholders were interviewed. Sampling yielded a heterogenous cohort for EDU (56% with 0–10, 44% with >10 visits) and age (25% 0–4, 44% 5–11, 31% > 11 years). IRR was optimal (κ = 0.9). Themes in perceived reasons for EDU were 1) desire for “one-stop-shop” care, 2) an emergent medical problem, 3) providers’ instructions, 4) negative past healthcare experience, 5) intrinsic caregiver moderators, and 6) temporospatial influences. Themes 1, 2, and 5 predominated in dyads, whereas themes 6, 3, and 5 were most common in stakeholders. Stakeholders focused largely on negative institutional and patient characteristics. Among dyads only, theme #1 was disproportionately emphasized by Spanish-speaking patients.
Discussion
Families desired access to coordinated expert care, testing and imaging. The ED offers this for children with SB, regardless of clinical acuity. This may be especially valued by families with inherent challenges to navigating the healthcare system. Negative experiences in community clinical settings, healthcare provider recommendations and intrinsic parental factors were themes that seemed to contribute to seeking this “one-stop-shop” type of care. Care coordination may reduce ED reliance, but themes for the interviews suggest a systems-based efforts should weave in the community care setting.
Conclusions
For both stakeholders and caregivers, the ED represented a valued form of immediate access to multispecialty, expert care and testing in the context of perceived lack of timely, coordinated outpatient care. This may be moderated by intrinsic caregiver factors and negative past experiences. Although stakeholders discussed ideas that fit into patient-caregiver themes, the also uniquely focused on systems-based and patient-caregiver limitations.
期刊介绍:
The Journal of Pediatric Urology publishes submitted research and clinical articles relating to Pediatric Urology which have been accepted after adequate peer review.
It publishes regular articles that have been submitted after invitation, that cover the curriculum of Pediatric Urology, and enable trainee surgeons to attain theoretical competence of the sub-specialty.
It publishes regular reviews of pediatric urological articles appearing in other journals.
It publishes invited review articles by recognised experts on modern or controversial aspects of the sub-specialty.
It enables any affiliated society to advertise society events or information in the journal without charge and will publish abstracts of papers to be read at society meetings.