Browsing by Subject "Qualitative research"
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Item A patient- and parent-centered approach to urinary and fecal incontinence in children and adolescents with spina bifida: understanding experiences in the context of other competing care issue(Elsevier, 2023) Szymanski, Konrad M.; Carroll, Aaron E.; Misseri, Rosalia; Moore, Courtney M.; Hawryluk, Bridget A.; Wiehe, Sarah E.; Pediatrics, School of MedicineIntroduction: 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. Methods: 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. Results: 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). Comment: Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. Conclusions: 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.Item Activities and support provided by family caregivers of persons with type 2 diabetes(2016-03-11) Scarton, Lisa J.; Bakas, Tamilyn; Miller, Wendy; McLennon, Susan M.; Huber, LesaType 2 diabetes, a chronic condition affecting millions, continues to rise in epidemic proportions. Type 2 diabetes, managed through lifestyle changes, affects the entire family. Family caregivers provide vital support to these individuals; however, little research has been conducted surrounding the perceived difficulty or ease of caregiver activity and supportive behaviors. The purpose of this dissertation was to develop and psychometrically test a scale that measures this difficulty or ease of activities and behaviors. This was accomplished through the compilation of three distinct manuscripts. First, an integrative review was conducted to identify what is known regarding needs and concerns of family caregivers of persons with type 2 diabetes; findings revealed a need for more research. Then, based on these recommendations, a qualitative study was conducted that explored the needs and concerns identified by 33 American Indian, African American, and White family caregivers. All these caregivers had similar concerns related to needing general diabetes information, providing support to the family member, and taking care of their own health. Study themes were used to develop items for a new instrument, the Diabetes Caregiver Activity and Support Scale (D-CASS) that was psychometrically tested with 101 American Indian, African American, and White family caregivers of persons with type 2 diabetes. This study used a cross-sectional, descriptive-correlational design and provided evidence of internal consistency reliability (α = .82) and two-week test-retest reliability (intraclass correlation coefficient = .70) for the D-CASS. Criterion-related validity was established using a single-item criterion measuring overall how easy or difficult it was for caregivers to provide care for their loved ones (r = .65, p < .01). Unidimensionality was supported by factor analysis, with loadings ranging from .45 to .70, with 32% of the variance explained by the first factor (eigenvalue = 4.02). Model testing through a series of three hierarchical multiple regressions guided by a conceptual model provided further evidence of construct validity for the D-CASS. This dissertation provided better understanding of needs and concerns of family caregivers of persons with type 2 diabetes and led to the development of a psychometrically sound diabetes-specific instrument for future research.Item Adolescent Birth Mothers After Unintended Pregnancy and Infant Open Adoption(2009-12-08T19:11:56Z) Clutter, Lynn B.; Sims, Sharon L.Birth mothers of open adoption are not well studied. This inquiry explored birth mothers’ experiences surrounding unintended pregnancy and infant open adoption placement. The focused objective was to describe adolescent birth mothers’ lives following pregnancy and adoption placement. This qualitative study used naturalistic inquiry, with participants giving 1 to 2 hour tape recorded telephone interviews. Verbatim transcripts were de-identified and systematically analyzed. Birth mother samples were at either 1 to 5 years or 5 to 15 years after infant open adoption placement. Overall both samples chronicled stories from preconception through current life. Birth mothers of both samples were unanimous in their support of open adoption. The sample of 10 birth mothers who were interviewed 1 to 5 years postplacement shared life descriptions from prepregnancy; pregnancy with the decision for open adoption placement and choice of adoptive family; birth in context with the adoptive parents and birth child; postpartum and discharge. Postplacing birth mother findings were presented using the acronym AFRESH: A–adoption accomplishments; F–fresh start; R–relationships; E–emotions; S–support; H–healing. Personal, social, and relational benefits of open adoption far outweighed pregnancy, birth, and emotional challenges. Even though the process and outcome were “hard,” and included personal obstacles, the open adoption placement was “best.” Birth children were viewed as thriving, blossoming, and having a wonderful life. Adoptive families were cherished like those of extended family. Birth mothers thought health care providers should share the option, and then provide adoption friendly care. They also would advise pregnant teens to choose open adoption. Results from the 5 to 15 years postplacement sample of 5 birth mothers yielded themes of (1) satisfaction about decision for open adoption, choice of adoptive couple, and seeing a thriving birth child; (2) personal milestone accomplishments in education, finances, work, life, and relationships; (3) a sustaining sense of being a better person with an improved life; and (4) the essential need for support during and after the process.Item Are we missing the boat? Examining managers’ perspectives on employee wellbeing in the foodservice industry(Edward Elgar, 2021-05-01) Liu-Lastres, Bingjie; Wen, HanThe purpose of this research note was to examine managers’ perspectives on employee wellbeing in the foodservice industry. Particularly, this study conducted 14 semi-structured individual interviews with upper-level managers of various organizations within the foodservice industry. Thematic analyses were employed to analyze the data. The overall findings addressed the essence of considering employee wellbeing in the industry. Particularly, this study revealed managers’ interpretation of employee wellbeing, identified major influences on employee wellbeing, reported the current measures, and presented the major challenges facing most organizations regarding improving employee wellbeing. From a theoretical point of view, this study used a qualitative approach and reflected managers’ perspectives on the concept of employee wellbeing. Building on those findings, this study provides practical implications, which mainly involves using a forward-thinking, top-down approach to enhance employee wellbeing, and highlights the roles of organizational support and organizational culture. Based on the findings, this study also discusses future research directions and limitations.Item Ask the parents: Testing the acceptability and usability of a hypospadias decision aid(Elsevier, 2022) Binion, Kelsey; Miller, Andrew; Misseri, Rosalia; Kaefer, Martin; Longtin, Krista; Carroll, Aaron; Wiehe, Sarah E.; Chan, Katherine H.; Communication Studies, School of Liberal ArtsIntroduction: In previous work, we engaged key stakeholders to create a web-based decision aid (DA) prototype to facilitate shared decision making about hypospadias. Objective: The study's objective was to use a human-centered design approach to assess the DA's acceptability and usability and revise it prior to pilot testing. Methods: We recruited English-speaking parents (≥18 years old) of sons with hypospadias (≤5 years) for a two-phase process of semi-structured phone/video interviews to obtain feedback about our DA prototype. DA webpages included: "Hypospadias," "Surgery Basics," "No Surgery," "Family Stories," "Help Me Decide," and "FAQs." In both phases, participants viewed the DA using the "think aloud" technique and completed several validated scales to evaluate its acceptability and usability. In phase 1, we collected feedback about the "Homepage" organization, values clarification methods (VCM), and webpage content. In phase 2, participants searched the DA for answers to hypospadias-related questions, provided feedback on testimonial videos and VCM, and shared their preferences about data visualizations. All interviews were audio recorded. After each phase, transcripts were qualitatively analyzed to identify key areas for revision. Revisions were made between phase 1 and 2 to improve the DA's acceptability and usability. Results: We interviewed 20 participants (10/phase): median age 33.7 years, 60% female, 80% White. Mean score on the Preparation for Decision Making Scale: 86.8 (out of 100). We revised: 1) VCM, focusing on pros/cons of surgery and question prompts, 2) "Homepage," adding webpage descriptions (Extended Summary Figure), 3) menu organization, 4) "Surgery Day" webpage, adding general anesthesia risk information, and 5) "Hypospadias" webpage, adding an icon bar graph to help participants visualize statistics. Participants thought the testimonial videos were relatable and the VCMs would prepare them for their visit with their child's urologist. Discussion: Ours is the first parent-centered DA developed and pre-tested for hypospadias. Using validated usability and acceptability scales, participants highly rated the DA in helping them arrive at a decision about surgery. Study limitations include the sample's lack of diversity (i.e., educated, health literate) and participants already decided about their son's hypospadias management before enrolling. To learn more about the DA's usability and acceptability, we plan to pilot test it in a clinical setting. Conclusions: Participants found our DA informative in understanding hypospadias. There was a high perceived level of preparation for hypospadias decision making. Participatory research methods, such as "think aloud," may be helpful when testing DAs as they privilege the patient's experience.Item Assessing quality of life after pulmonary embolism: Comparing results from the PEmb-QoL with semistructured interviews(Elsevier, 2022-06-19) Hernandez-Nino, Jackeline; Ott, Mary A.; Thomas, Mary; Alexander, Andreia B.; Kline, Jeffrey A.; Emergency Medicine, School of MedicineBackground: The Pulmonary Embolism Quality of Life questionnaire (PEmb-QoL) assesses quality of life (QoL) in patients with previous pulmonary embolism (PE). Objective: Our aim was to assess the agreement between the PEmb-QoL and interviews and to explore other QoL concerns in patients diagnosed with PE. Methods: This mixed-method study included interviews with 21 patients about QoL after PE, followed by the PEmb-QoL questionnaire. In interviews, patients were asked about their lived experiences and impact of PE. Our analysis identified the frequency and severity of decreased QoL in qualitative interviews and compared with the PEmb-QoL score. Excerpts that described the effect of PE on QoL in interview transcripts were transcoded to match the answers corresponding to the 1 to 6 numeric values for each question from the PEmb-QoL using a predetermined matrix (eg, "constant" and "daily" = all of the time = value 1) and directly compared with responses on the PEmb-QoL in the areas of emotional complaints and activities of daily living/social limitations. Results: Interviews showed more functional impairment than predicted by PEmb-QoL. For fear of recurrence, 86% of participants had disagreements between PEmb-QoL scores and transcoded interview scores. We found 42% disagreement between reported descriptions of the inability to do or enjoy hobbies in interviews and the PEmb-QoL score. Conclusion: Patient interviews showed discordances compared with a validated psychometric tool. To capture a more detailed and accurate picture of the effect of PE on QoL, providers and researchers should consider the addition of qualitative methods to assess outcomes.Item Balancing Demands: Determinants of Burnout Reported by Fellows in Pulmonary and Critical Care Medicine(American Thoracic Society, 2021-01-29) O’Toole, Jacqueline; Zaeh, Sandra; Eakin, Michelle N.; Adelman, Mark H.; Ashton, Rendell W.; Daugherty Biddison, Lee; Bosslet, Gabriel T.; Burkart, Kristin M.; Doyle, Stephen T.; Khan, Malik M. Khurram S.; Lenz, Peter H.; McCallister, Jennifer W.; Rand, Cynthia S.; Riekert, Kristin A.; Soffler, Morgan I.; Winter, Gretchen R.; Sharp, Michelle; Medicine, School of MedicineBackground: Burnout is common among physicians who care for critically ill patients and is known to contribute to worse patient outcomes. Fellows training in pulmonary and critical care medicine (PCCM) have risk factors that make them susceptible to burnout; for example, clinical environments that require increased intellectual and emotional demands with long hours. The Accreditation Council for Graduate Medical Education has recognized the increasing importance of trainee burnout and encourages training programs to address burnout. Objective: To assess factors related to training and practice that posed a threat to the well-being among fellows training in PCCM and to obtain suggestions regarding how programs can improve fellow well-being. Methods: We conducted a qualitative content analysis of data collected from a prior cross-sectional electronic survey with free-response questions of fellows enrolled in pulmonary, PCCM, and critical care medicine training programs in the United States. Fellows were asked what factors posed a threat to their well-being and what changes their training program could implement. Responses were qualitatively coded and categorized into themes using thematic analysis. Results: A total of 427 fellows (44% of survey respondents) completed at least one free-response question. The majority of respondents (60%) identified as male and white/non-Hispanic (59%). The threats to well-being and burnout were grouped into five themes: clinical burden, individual factors, team culture, limited autonomy, and program resources. Clinical burden was the most common threat discussed by fellows. Fellows highlighted factors contributing to burnout that specifically pertained to trainees including challenging interpersonal relationships with attending physicians and limited protected educational time. Fellows proposed solutions addressing clinical care, changes at the program or institution level, and organizational culture changes to improve well-being. Conclusion: This study provides insight into factors fellows report as contributors to burnout and decreased well-being in addition to investigating fellow-driven solutions toward improving well-being. These solutions may help pulmonary, PCCM, and critical care medicine program directors better address fellow well-being in the future.Item Balancing patient-centered and safe pain care for non-surgical inpatients: clinical and managerial perspectives(Elsevier, 2018-12-24) Mazurenko, Olena; Andraka-Christou, Barbara T.; Bair, Matthew J.; Kara, Areeba Y.; Harle, Chris; Health Policy and Management, School of Public HealthBackground: Hospitals and clinicians aim to deliver care that is safe. Simultaneously, they are ensuring that care is patient-centered, meaning that it is respectful of patients’ values, preferences, and experiences. However, little is known about delivering care in cases where these goals may not align. For example, hospitals and clinicians are facing the daunting challenge of balancing safe and patient-centered pain care for nonsurgical patients, due to lack of comprehensive care guidelines and complexity of this patient population. Methods: To gather clinical and managerial perspectives on the importance, feasibility, and strategies used to balance patient-centered care (PCC) and safe pain care for nonsurgical inpatients, we conducted in-depth, semi-structured interviews with hospitalists (n=10), registered nurses (n=10), and health care managers (n=10) from one healthcare system in the Midwestern United States. We systematically examined transcribed interviews and identified major themes using a thematic analysis approach. Results: Participants acknowledged the importance of balancing PCC and safe pain care. They envisioned this balance as a continuum, with certain patients for whom it is easier (e.g., opioid-naïve patient with a fracture), versus more difficult (e.g., patient with opioid use disorder). Participants also reported several strategies they use to balance PCC and safe pain care, including offering alternatives to opioids, setting realistic pain goals and expectations, and using a team approach. Conclusions: Clinicians and health care managers use various strategies to balance PCC and safe pain care for nonsurgical patients. Future studies should examine the effectiveness of these strategies on patient outcomes.Item Barriers and Facilitators to Implementing Patient-Reported Outcome Monitoring in Gastrointestinal Surgery(Elsevier, 2023) Iroz, Cassandra B.; Johnson, Julie K.; Ager, Meagan S.; Joung, Rachel Hae-Soo; Brajcich, Brian C.; Cella, David; Franklin, Patricia D.; Holl, Jane L.; Bilimoria, Karl Y.; Merkow, Ryan P.; Surgery, School of MedicineIntroduction: More than 30% of patients experience complications after major gastrointestinal (GI) surgery, many of which occur after discharge when patients and families must assume responsibility for monitoring. Patient-reported outcomes (PROs) have been proposed as a tool for remote monitoring to identify deviations in recovery, and recognize and manage complications earlier. This study's objective was to characterize barriers and facilitators to the use of PROs as a patient monitoring tool following GI surgery. Methods: We conducted semistructured interviews with GI surgery patients and clinicians (surgeons, nurses, and advanced practitioners). Patients and clinicians were asked to describe their experience using a PRO monitoring system in three surgical oncology clinics. Using a phenomenological approach, research team dyads independently coded the transcripts using an inductively developed codebook and the constant comparative approach with differences reconciled by consensus. Results: Ten patients and five clinicians participated in the interviews. We identified four overarching themes related to functionality, workflow, meaningfulness, and actionability. Functionality refers to barriers faced by clinicians and patients in using the PRO technology. Workflow represents problematic integration of PROs into the clinical workflow and need for setting expectations with patients. Meaningfulness refers to lack of patient and clinician understanding of the impact of PROs on patient care. Finally, actionability reflects barriers to follow-up and practical use of PRO data. Conclusions: While use of PRO systems for postoperative patient monitoring have expanded, significant barriers persist for both patients and clinicians. Implementation enhancements are needed to optimize functionality, workflow, meaningfulness, and actionability.Item Barriers and facilitators to interdisciplinary communication during consultations: a qualitative study(BMJ, 2021-09-02) Liu, Pingyang; Lyndon, Audrey; Holl, Jane L.; Johnson, Julie; Bilimoria, Karl Y.; Stey, Anne M.; Surgery, School of MedicineObjective: Communication failures between clinicians lead to poor patient outcomes. Critically injured patients have multiple injured organ systems and require complex multidisciplinary care from a wide range of healthcare professionals and communication failures are abundantly common. This study sought to determine barriers and facilitators to interdisciplinary communication between the consulting trauma, intensive care unit (ICU) team and specialty consultants for critically injured patients at an urban, safety-net, level 1 trauma centre. Design: An observational qualitative study of barriers and facilitators to interdisciplinary communication. Setting: We conducted observations of daily rounds in two trauma surgical ICUs and recorded the most frequently consulted teams. Participants: Key informant interviews after presenting clinical vignettes as discussion prompts were conducted with a broad range of clinicians from the ICUs and physicians and nurse practitioners from the consultant teams who were identified during the observations. Interviews were recorded and transcribed verbatim. Data of these 10 interviews were combined with primary transcript data from prior study (25 interviews) and analysed together because of the same setting with same themes. Independent coding of the transcripts, with iterative reconciliation, was performed by two coders. Outcomes measures: Facilitators and barriers of interdisciplinary communication were identified. Results: A total of 35 interview transcripts were analysed. Cardiology and interventional radiology were the most frequently consulted teams. Consulting and consultant clinicians reported that perceived accessibility from the team seeking a consultation and the consultant team impacted interdisciplinary communication. Accessibility had a physical dimension as well as a psychological dimension. Accessibility was demonstrated by responsiveness between clinicians of different disciplines and in turn facilitated interdisciplinary communication. Social norms, cognitive biases, hierarchy and relationships were reported as both facilitators and barriers to accessibility, and therefore, interdisciplinary communication. Conclusion: Accessibility impacted interdisciplinary communication between the consulting and the consultant team. Article summary: Elucidates barriers and facilitators to interdisciplinary communication between consulting and consultant teams.