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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 Nurse Management of Hypertension: A Qualitative Analysis from Western Kenya(International Society on Hypertension in Blacks, 2016-07-21) Vedanthan, Rajesh; Tuikong, Nelly; Kofler, Claire; Blank, Evan; Naanyu, Violet; Kimaiyo, Sylvester; Inui, Thomas S.; Horowitz, Carol R.; Fuster, Valentin; Kimaiyo, Jemima H.; Department of Medicine, IU School of MedicineBACKGROUND: Hypertension is the leading global risk for mortality. Poor treatment and control of hypertension in low- and middle-income countries is due to several reasons, including insufficient human resources. Nurse management of hypertension is a novel approach to address the human resource challenge. However, specific barriers and facilitators to this strategy are not known. OBJECTIVE: To evaluate barriers and facilitators to nurse management of hypertensive patients in rural western Kenya, using a qualitative research approach. METHODS: Six key informant interviews (five men, one woman) and seven focus group discussions (24 men, 33 women) were conducted among physicians, clinical officers, nurses, support staff, patients, and community leaders. Content analysis was performed using Atlas.ti 7.0, using deductive and inductive codes that were then grouped into themes representing barriers and facilitators. Ranking of barriers and facilitators was performed using triangulation of density of participant responses from the focus group discussions and key informant interviews, as well as investigator assessments using a two-round Delphi exercise. RESULTS: We identified a total of 23 barriers and nine facilitators to nurse management of hypertension, spanning the following categories of factors: health systems, environmental, nurse-specific, patient-specific, emotional, and community. The Delphi results were generally consistent with the findings from the content analysis. CONCLUSION: Nurse management of hypertension is a potentially feasible strategy to address the human resource challenge of hypertension control in low-resource settings. However, successful implementation will be contingent upon addressing barriers such as access to medications, quality of care, training of nurses, health education, and stigma.Item Barriers to and facilitators of effective management of fever episodes in hospitalised Kenyan children with cancer: protocol for convergent mixed methods study(BMJ Publishing, 2023-11-02) Nessle, Charles Nathaniel; Njuguna, Festus; Dettinger, Julia; Koima, Raphael; Nyamusi, Lenah; Kisembe, Evelynn; Kinja, Sarah; Ndung’u, Mercy; Njenga, Dennis; Langat, Sandra; Olbara, Gilbert; Moyer, Cheryl; Vik, Terry; Pediatrics, School of MedicineIntroduction: Febrile neutropenia is an oncological emergency in children with cancer, associated with serious infections and complications. In low-resourced settings, death from infections in children with cancer is 20 times higher than in high-resourced treatment settings, thought to be related to delays in antibiotic administration and management. The barriers to effective management of fever episodes in children with cancer have not previously been described. This convergent mixed-methods study will provide the evidence to develop fever treatment guidelines and to inform their effective implementation in children with cancer at Moi Teaching and Referral Hospital (MTRH), a level 6 referral hospital in western Kenya. Methods and analysis: Prospective data collection of paediatric patients with cancer with new fever episodes admitted to MTRH will be performed during routine treatment. Clinical variables will be collected from 50 fever episodes, including cancer diagnosis and infectious characteristics of the fever episode, and elapsed time from fever onset to various milestones in the management workflow. Semistructured qualitative interviews with healthcare providers (estimated 20 to reach saturation) will explore the barriers to and facilitators of appropriate management of fever episodes in children with cancer. The interview guide was informed by a theoretical framework and Consolidated Framework for Implementation Research. A mixed-methods analysis use of joint display tables and process mapping will link and integrate the two types of data with meta-inferences. Ethics and dissemination: Institutional review board approval was obtained from the MTRH (0004273) and the University of Michigan (HUM0225674), and the study was registered with National Commission for Science Technology and Innovation (P/23/22885). Written consent will be obtained from all participants. Results will be formally shared with local and national policy leadership and local end users, presented at relevant national academic conferences and submitted for publication in a peer-reviewed journal.