Thematic Saturation Research Articles

How do women with interstitial cystitis/bladder pain syndrome make treatment choices?

Introduction and hypothesisThere is a relative lack of data regarding how patients weigh various factors when choosing a treatment strategy for interstitial cystitis/bladder pain syndrome (IC/BPS). Our aim is to describe patient experience with their current and prior treatments and discuss factors they consider when choosing a treatment.MethodsTwenty-one women with IC/BPS participated in five focus groups moderated by a psychologist. Focus groups were conducted until thematic saturation was reached. Group discussions were transcribed and independently coded by two reviewers. Emergent themes and concepts were identified using grounded theory methodology. Data on symptoms and beliefs regarding medications were collected using validated questionnaires: Interstitial Cystitis Symptom and Problem Index (ICSI and ICPI) and Beliefs in Medications Questionnaire-Specific (BMQ-S).ResultsThe median age of participants was 42 years, and all had some college education. Median score (range) for the ICSI was 12 (4, 20) and for the ICPI was 10 (3, 16), indicating moderate symptom burden. Most patients had tried only first- or second-line treatments. The median BMQ-S score was 2, indicating a neutral attitude toward medication. Several themes were identified. Patients expressed interest in self-management of symptoms using a structured care plan that incorporates guided self-care practices and care that can be delivered virtually. Patients desired to minimize treatment side effects by reducing prescription medications and avoiding surgical procedures. Finally, patients had considerable interest in alternative treatments; however, they wanted these treatments to be evidence-based.ConclusionsWomen with IC/BPS have a strong interest in guided programs that teach self-care practices and deliver alternative treatments through remote platforms.

Educational Priorities for Providing End-of-Life Care: Parent Perspectives.

Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.

S487 What Patients With Eosinophilic Esophagitis May Not Share with Their Providers: A Qualitative Assessment of Online Health Communities

Introduction: Little is known about how patients with eosinophilic esophagitis (EoE) experience and describe their symptoms, receive care, and cope with their chronic disease, which may impact adherence to treatment, disease control, and quality of life. Patients commonly seek peer support from online health communities and these virtual forums serve as unguarded data sources that provide raw insights on unmet needs and barriers to care and communication. We performed a qualitative analysis of electronic health forums to characterize patient to patient conversations about EoE symptoms and the experience of disease. Methods: We identified 3 publicly accessible electronic health forums hosting EoE communities. Conversation threads posted between July 2018 and June 2020 were coded using emergent and a priori codes based on the THRIVE conceptual framework of coping with chronic illness. Results: Of 659 threads (4,933 posts) collected over 2 years, a random sample of 240 threads (30 per 3-month quarter) were selected for analysis. Thematic saturation was reached after 172 threads. Patient experience of EoE was driven by their perspectives in 4 key domains: 1) EoE as episodic rather than chronic: symptoms often described as “flares” or self-limited “attacks” rather than a constant problem; 2) treatment choices: medications as a quick fix for short-term symptoms versus elimination diet as a tailored maintenance therapy; 3) personal success: varied definitions of positive disease outcomes; and 4) views of providers: encountering physicians who lacked knowledge about the disease and its treatment and/or were unsupportive of patient choices (Table). Conclusion: Online health communities are a valuable and unfiltered source of patient perspectives and disease-related language that can be used to understand patient needs and goals, improve education, and facilitate communication. EoE patients interpret their disease as sporadic events, polarize treatments as short-term fixes or long-term commitments, have various definitions of disease success, and lack reliable sources of knowledge, which may influence how chronic treatment is prioritized and misjudged as nonadherence. If providers are to succeed in providing high-quality EoE care, they need to equip themselves with evidence-based knowledge, engage in collaboration and shared decision making with patients, and look outside of the clinical setting to recognize barriers to disease management.Table 1.: Representative quotations from key themes.

Novel tool for assessing the quality of feedback in the emergency room (FEED-ER).

The Accreditation Council for Graduate Medical Education (ACGME) emphasizes constructive feedback as a critical component of residency training. Despite over a decade of using competency-based milestone evaluations, emergency medicine (EM) residency programs lack a standardized method for assessing the quality of feedback. We developed two novel EM-specific feedback surveys to assess the quality of feedback in the ER (FEED-ER) from both the resident and the faculty perspectives. This study aimed to evaluate the surveys' psychometric properties. We developed FEED-ER using a Likert scale with faculty and resident versions based on the ACGME framework and a literature review. The preliminary survey consisted of 25 questions involving the feedback domains of timeliness, respect/communication, specificity, action plan, and feedback culture. We conducted two modified Delphi rounds involving 17 content experts to ensure respondent understanding of the items, item coherence to corresponding feedback domains, thematic saturation of domain content, and time duration. A multicenter study was conducted at five university-based EDs in the United States and one in Thailand in 2019. We evaluated the descriptive statistics of the frequency of responses, validity evidence, and reliability of FEED-ER. A total of 147 EM faculty and 126 EM residents completed the survey. Internal consistency was adequate (Cronbach's alpha > 0.70) and test-retest reliability showed adequate temporal stability (ICC > 0.80) for all dimensions. Content validity was deemed acceptable (CVC > 0.80) for all items. From the 25 items of FEED-ER, 23loaded into the originally theorized dimensions (with factor loadings > 0.50). Additionally, the five feedback domains were found to be statistically distinct, with correlations between 0.40 and 0.60. The final survey has 23 items. This is the first study to develop and provide validity evidence for an EM-specific feedback tool that has strong psychometric properties, is reproducible and reliable, and provides an objective measure for assessing the quality of feedback in the ED.

Dental public health post-graduate trainees in the US: Experiences, challenges, and opportunities-A qualitative study.

The goal of this study was to explore challenges and opportunities that dental public health (DPH) residents and recent graduates experienced during and after their residency training programs in the US. In this qualitative study, to recruit participants, study invitations were distributed to 93 DPH postgraduate trainees via social media, email, and an online DPH nationwide course in 2019. Semi-structured in-depth interviews were conducted through Zoom audioconference. The interviews were conducted until thematic saturation was achieved. The audio-recorded interviews were transcribed and crosschecked to ensure accuracy. The interviews were coded using grounded theory. A qualitative analysis software (ATLAS.ti 8.0) was used to facilitate coding and organizing data extraction from transcripts. Eighteen DPH postgraduate trainees from 12 DPH residency programs participated and completed the interview. DPH trainees had experienced educational and financial challenges, difficulty finding DPH-related jobs after graduation, and a complex board examination preparation process. DPH postgraduate trainees and especially foreign-trained dentists experienced serious challenges during and after their postgraduate residency programs. Opportunities exist to enhance the strength of DPH programs to build a competent DPH workforce.

Impact of Periodontal Disease on the Quality of Life of Older People in Indonesia: A Qualitative Study.

Introduction:The impact of periodontal disease on oral health–related quality of life (OHRQoL) has often been investigated from a quantitative research perspective, which is based on clinical findings and an OHRQoL questionnaire. Very few studies have examined the issue from the view of qualitative research. To our knowledge, there have been no previous qualitative studies focusing the effect of periodontal disease on OHRQoL in Indonesian older people.Objectives:To explore and understand the impact of periodontal disease on the OHRQoL of older people as a subjective reflection in relation to periodontal disease experiences.Methods:Semi-structured interviews were conducted in a sample of 31 older people with generalized chronic periodontitis. Thematic analysis was used to identify the key issues in participants’ accounts. The analysis was undertaken by 2 independent coders to ensure reliability. To achieve thematic saturation, successive interviews were undertaken until 5 sequential interviews did not bring new themes.Results:Participants reported the negative effects likely related to periodontal disease. The impacts of periodontal disease were described by these older people as affecting more than pain, physical discomfort, and physical function restrictions. Periodontal disease also affected their psychological and social aspects of daily living. In addition, this study identified themes related to individual and environmental factors that may modify and personalize periodontal disease experiences. Furthermore, this study identified a misleading belief that problems related to periodontal disease were a normal part of aging, which might influence individuals’ expectations toward oral health. Relatedly, participants frequently reported that the progression of tooth mobility to tooth loss was an inevitable part of the aging process.Conclusions:Periodontal disease negatively affected participants’ OHRQoL. It is fundamental to understand older people’s perceptions toward their periodontal disease as well as individual and environmental factors that may have an influence on their periodontal disease experiences.Knowledge Transfer Statement:This study is a reflection of Indonesian older people’s subjective periodontal disease experiences. Therefore, the present study can be used to understand older people’s perceptions, attitudes, behaviors, and experiences toward periodontal disease and how this disease may affect their quality of life. This study also highlights a widespread and misleading belief that oral problems related to periodontal disease are an inevitable part of aging in this study population.

Point of care ultrasound in acutely breathless patients-A qualitative study of the enablers and challenges in a teaching hospital in Kenya

Objectives: Acute breathlessness is a common and distressing symptom experienced by patients presenting to the emergency department (ED). Adoption of clinician-performed bedside ultrasound could promote accurate, early diagnosis and treatment to acutely breathless patients. This may be particularly pertinent in low resource settings with limited human resources and lack of access to advanced (gold standard) diagnostic testing. The aim of the study was to explore the experience of point-of-care ultrasound (PoCUS) users in the emergency department, and to understand the facilitators and constraints of PoCUS incorporation into patient investigation pathways. Materials and Methods: This was an exploratory qualitative study. Data collection entailed key informant interviews using a semi-structured interview guide between September 2019 and February 2020. Participants were purposively sampled according to role and responsibility in the acute care system at Kenyatta National Hospital, including front-line health practitioners and mid-level clinical hospital managers. Data collection proceeded until no new concepts emerged (thematic saturation). The analytical framework method was used for the thematic analysis of interview transcripts. Results: At individual level, the lack of training on the use of PoCUS, as well as fears and beliefs impacted on capability and motivation of the clinicians to perform PoCUS for clinical diagnosis. Hospital level influencers such as hospital norms, workloads, and staffing influenced the use of PoCUS by impacting on the clinician’s capability, motivation, and opportunity. General health system influencers such as relationships and power dynamics between clinical specialties and key stakeholders, and the lack of policy and practice guidelines challenged the uptake of the bedside ultrasound by the clinicians. Conclusion: Lack of PoCUS training for clinicians, limited resources and a fragmented health system structure impacted the clinician’s capability, motivation, and opportunity in performing PoCUS in diagnostics. PoCUS for diagnosis of acute breathlessness requires: (1) Well-maintained and accessible equipment; (2) highly trained individuals with time to perform the examination with access to ongoing support for the operators; and (3) finally, researchers must more accurately identify the optimal scope of ultrasound examination, the diagnostic benefits, and the opportunity costs. All three will be required to ensure patient’s benefit.

Older patients\u2019 perspectives on factors contributing to frequent visits to the emergency department: a qualitative interview study

BackgroundOlder patients are at high risk of unplanned revisits to the emergency department (ED) because of their medical complexity. To reduce the number of ED visits, we need more knowledge about the patient-level, environmental, and healthcare factors involved. The aim of this study was to describe older patients’ perspectives and experiences before and after an ED visit, and to identify factors that possibly contribute to frequent ED revisits.MethodsThis was a qualitative description study. We performed semi-structured individual interviews with older patients who frequently visited the ED and were discharged home after an acute visit. Patients were enrolled in the ED of a university medical centre using purposive sampling. Interviews were recorded, transcribed, and coded independently by two researchers. Theoretical analysis was used to identify recurring patterns and themes in the data. Interviews were conducted until thematic saturation was reached.ResultsIn-depth interviews were completed with 13 older patients. Three main themes emerged: 1) medical events leading to feelings of crisis, 2) patients’ untreated health problems, and 3) persistent problems in health and daily functioning post discharge. Participants identified problems before and after their ED visit that possibly contributed to further ED visits. These problems included increasing symptoms leading to feelings of crisis, the relationship with the general practitioner, incomplete discharge information at the ED, and inadequate follow-up and lack of recovery after an ED visit.ConclusionsThis qualitative study identified multiple factors that may contribute to frequent ED visits among older patients. Older patients in need of acute care might benefit from hospital-at-home interventions, or acute care provided by geriatric emergency teams in the primary care setting. Identifying frailty in the ED is needed to improve discharge communication and adequate follow-up is needed to improve recovery after an acute ED visit.

A qualitative investigation of the psychosocial services utilised by care-givers of patients with Alzheimer's disease and related dementias in southwestern Uganda.

Individuals with Alzheimer's disease and related dementias often require substantial support from other people. Much of the care-giving is from family members who eventually experience physical, emotional and financial stress, depression and fatigue. In Uganda, families are a cornerstone in providing care to individuals with dementia. However, little is known about the psychosocial supports available to the care-givers in their care-giving role. We assessed the psychosocial supports available to care-givers of individuals with Alzheimer's disease and related dementias in southwestern Uganda. We conducted 34 in-depth interviews at three referral hospitals at which care-givers identified by the treating clinicians were approached for informed consent. The interviews were conducted until thematic saturation was reached, and the interviews were translated and transcribed. Thematic content analysis was used to analyse the data. Care-giver supports were structured into two major themes: medical supports utilized and supports beyond the medical care system. Medical supports highlighted information provided by medical professionals. Supports beyond the medical care system included emotional and instrumental supports provided by religious leaders, the local communities and family members. Care-givers for individuals with dementia in southwestern Uganda receive educational support from medical practitioners, and unstructured emotional and instrumental supports from the family and community.

(Re)activation of survival strategies during pregnancy and childbirth following experiences of childhood sexual abuse

ABSTRACT Objectives To explore the pregnancy and childbearing experiences of women-survivors of childhood sexual abuse [CSA]. We aimed to generate a theory explaining those experiences for this population (women), this phenomenon (pregnancy and childbirth), and this context (those who have survived CSA). Method Participants (N=6) were recruited to semi-structured interviews about their experiences of CSA and subsequent pregnancy and childbirth. Data saturated early, and were analysed using Grounded Theory (appropriate to cross-disciplinary health research). Coding was inductive and iterative, to ensure rigour and achieve thematic saturation. Results Open and focused coding led to the generation of super-categories, which in-turn were collapsed into three distinct, but related themes. These themes were: Chronicity of Childhood (Sexual) Abuse; Pregnancy and Childbirth as Paradoxically (Un)safe Experiences; Enduring Nature of Survival Strategies. The relationship between these themes was explained as the theory of: (Re)activation of Survival Strategies during Pregnancy and Childbirth following Experiences of Childhood Sexual Abuse. Conclusion Pregnancy and childbirth can be triggering for women-survivors of CSA. Survival strategies learnt during experiences of CSA can be (re)activated as a way of not only coping, but surviving (the sometimes unconsented) procedures, such as monitoring and physical examinations, as well as the feelings of lack of control and bodily agency.

Do gender and racial differences exist in letters of recommendation for obstetrics and gynecology residency applicants?

Studies in several fields demonstrate gender and racial differences in descriptions of applicants in letters of recommendation. However, gender and racial biases in obstetrics and gynecology residency letters of recommendation are understudied. This study aimed to determine whether there are differences in the letters of recommendation written for medical students applying for obstetrics and gynecology residency based on applicant gender and underrepresented in medicine status. We analyzed all letters of recommendation submitted to a single obstetrics and gynecology residency program during the 2019-2020 application cycle using a computerized text analysis software to evaluate the presence of 25 word categories. Multivariable regression was used to compare differences in the frequency of word categories by gender and underrepresented in medicine status. Concurrently, we performed a qualitative content analysis of letters from a random sample of applicants balanced for gender and underrepresented in medicine status and explored emerging themes until thematic saturation was reached. We analyzed 3060 letters written for 834 applicants, 721 (87%) of whom were women and 198 (24%) of whom were underrepresented in medicine. Men authored 1605 letters (53%). There was no difference in word categories used in letters written for men and women applicants on multivariable analysis. Similarly, there was no word category difference between letters written for applicants who were underrepresented in medicine compared with White and Asian applicants. However, women letter writers used more communal (relationship-oriented) words compared with men letter writers (P<.001). Moreover, on the qualitative analysis of letters from a random sample of 30 applicants, comments about personality traits were frequent in all letters. Comments on surgical skills, work ethic, and leadership were found more in letters for White and Asian applicants, and phrases that were doubt raisers were found more in letters written for underrepresented medicine applicants. On linguistic analysis, letters of recommendation written for obstetrics and gynecology residency applicants were similar overall compared with applicant race and gender.

Material Hardship and Stress from COVID-19 in Immigrant Chinese American Families with Infants.

Material hardship and stress, associated with poor infant outcomes, increased during the Coronavirus Disease 2019 pandemic. Chinese American families were vulnerable to racism-driven disparities. Little is known about maternal perceptions of pandemic impacts on their infants, family, and community. Purposive sampling of low-income Chinese American mothers (n = 25) with infants (1–15 months). Semi-structured qualitative interviews conducted in Mandarin, Cantonese, or English were audio-recorded, transcribed, and translated. Transcripts coded using applied thematic analysis in an iterative process of textual analysis until thematic saturation. Three themes emerged: (1) Heightened family hardship included financial strain, disruption of transnational childcare, experiences of racism; (2) Altered infant routines/developmental consequences included using protective equipment on infants, concerns about infant socio-emotional development; (3) Coping strategies included stockpiling essentials, adapting family diets. Strategies to mitigate disparities include expanding social needs screening, correcting misinformation, strengthening support networks, and including low-income Chinese Americans in these efforts.

Reimagining Pharmacy Education through the Lens of a Choose Your Own Adventure Activity—A Qualitative Evaluation

Background: Successful pharmacy curricula expose students to a variety of teaching and assessment methods to prepare students for clinical practice. However, development of clinical decision-making skills is often challenging for learners. To meet this need, the Choose Your Own Adventure (CYOA) Patient Case Format was developed to enhance traditional paper patient cases by integrating problem-based and case-based learning to improve pharmacy student learning. The objectives of this evaluation were to qualitatively evaluate the CYOA case format. The qualitative assessment of the student pharmacist’s learning experience utilizing this novel patient case format was used to formulate a template for extrapolation to other disease states. Methods: Focus groups were conducted with second year Pharm.D. students enrolled at the University of Tennessee Health Science Center (UTHSC) College of Pharmacy. The focus groups were conducted in Fall 2020, beginning the week after they were exposed to the CYOA case format. The corpus of data was analyzed thematically to identify themes using inductive coding. To establish the validity of this evaluation, the team met to assess the consistency of the data reduction methods and guard against methodological issues that could influence and affect coding decisions. Results: Participants were recruited until thematic saturation was achieved. Out of 25 participants, 23 participants provided demographic information, with 74% identifying as female. Thematic analysis identified three themes: (1) “It was just fun!” (2) Empowering Pharmacy Students through Groupwork: “Collaboration [is] going to be vital” and (3) Meeting the Need for Real-Life Scenarios: “This is a real person.” Conclusions: The data highlight that there are numerous advantages of adopting the CYOA format for delivering applied pharmacotherapy content. The CYOA format presents students with a realistic scenario that is fun and engaging and challenges students to justify their decisions regarding patient care in a structured group environment.

Provider Barriers and Facilitators of Breast Cancer Guideline-Concordant Therapy Delivery in Botswana: A Consolidated Framework for Implementation Research Analysis.

IntroductionSystemic treatment for breast cancer in sub‐Saharan Africa (SSA) is cost effective. However, there are limited real‐world data on the translation of breast cancer treatment guidelines into clinical practice in SSA. The study aimed to identify provider factors associated with adherence to breast cancer guideline‐concordant care at Princess Marina Hospital (PMH) in Botswana.Materials and MethodsThe Consolidated Framework for Implementation Research was used to conduct one‐on‐one semistructured interviews with breast cancer providers at PMH. Purposive sampling was used, and sample size was determined by thematic saturation. Transcribed interviews were double‐coded and analyzed in NVivo using an integrated analysis approach.ResultsForty‐one providers across eight departments were interviewed. There were variations in breast cancer guidelines used. Facilitators included a strong tension for change and a government‐funded comprehensive cancer care plan. Common provider and health system barriers were lack of available resources, staff shortages and poor skills retention, lack of relative priority compared with HIV/AIDS, suboptimal interdepartmental communication, and lack of a clearly defined national cancer control policy. Community‐level barriers included accessibility and associated transportation costs. Participants recommended the formal implementation of future guidelines that involved key stakeholders in all phases of planning and implementation, strategic government buy‐in, expansion of multidisciplinary tumor boards, leveraging nongovernmental and academic partnerships, and setting up monitoring, evaluation, and feedback processes.DiscussionThe study identified complex, multilevel factors affecting breast cancer treatment delivery in Botswana. These results and recommendations will inform strategies to overcome specific barriers in order to promote standardized breast cancer care delivery and improve survival outcomes.Implications for PracticeTo address the increasing cancer burden in low‐ and middle‐income countries, resource‐stratified guidelines have been developed by multiple international organizations to promote high‐quality guideline‐concordant care. However, these guidelines still require adaptation in order to be successfully translated into clinical practice in the countries where they are intended to be used. This study highlights a systematic approach of evaluating important contextual factors associated with the successful adaptation and implementation of resource‐stratified guidelines in sub‐Saharan Africa. In Botswana, there is a critical need for local stakeholder input to inform country‐level and facility‐level resources, cancer care accessibility, and community‐level barriers and facilitators.

Taking a Chance to Recover: Families Look Back on the Decision to Pursue Tracheostomy After Severe Acute Brain Injury.

BackgroundTracheostomy represents one important and value-laden treatment decision after severe acute brain injury (SABI). Whether to pursue this life-sustaining treatment typically hinges on intense conversations between family and clinicians. The aim of this study was, among a cohort of patient who had undergone tracheostomy after SABI, to explore the long-term reflections of patients and their families as they look back on this decision.MethodsFor this qualitative study, we reviewed the electronic medical records of patients with SABI who underwent tracheostomy. We included all patients who were admitted to our 30-bed neuro-intensive care unit with SABI and underwent tracheostomy between November 2017 and October 2019. Using purposive sampling, we invited survivors and family members to participate in telephone interviews greater than 3 months after SABI until thematic saturation was reached. Interviews were audiotaped, transcribed, and analyzed by using thematic analysis.ResultsOverall, 38 patients with SABI in the neuro-intensive care unit underwent tracheostomy. The mean age of patients was 49 (range 18–81), with 19 of 38 patients diagnosed with traumatic brain injury and 19 of 38 with stroke. We interviewed 20 family members of 18 of 38 patients at a mean of 16 (SD 9) months after hospitalization. The mean patient age among those with an interview was 50 (range 18–76); the mean modified Rankin Scale score (mRS) was 4.7 (SD 0.8) at hospital discharge. At the time of the interview, ten patients lived at home and two in a skilled nursing facility and had a mean mRS of 2.6 (SD 0.9), and six had died. As families reflected on the decision to proceed with a tracheostomy, two themes emerged. First, families did not remember tracheostomy as a choice because the uncertain chance of recovery rendered the certain alternative of death unacceptable or because they valued survival above all and therefore could not perceive an alternative to life-sustaining treatment. Second, families identified a fundamental need to receive supportive, consistent communication centering around compassion, clarity, and hope. When this need was met, families were able to reflect on the tracheostomy decision with peace, regardless of their loved one’s eventual outcome.ConclusionsAfter SABI, prognostic uncertainty almost transcends the concept of choice. Families who proceeded with a tracheostomy saw it as the only option at the time. High-quality communication may mitigate the stress surrounding this high-stakes decision.Supplementary InformationThe online version contains supplementary material available at 10.1007/s12028-021-01335-9.

Caregiving during the Time of COVID‐19: A Multi‐State Qualitative Study of Family Caregiver Experiences and Decision‐Making

Research ObjectiveCOVID‐19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic.Study DesignUsing purposive sampling, family caregivers participated in open‐ended qualitive interviews (2019–2020), until thematic saturation was reached. Questions broadly examined caregivers' experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long‐term services and support expenditures. They include; Arkansas, Florida, Illinois, Minnesota, New York, North Carolina, and Oregon. All participants were actively involved in the care of someone with dementia or another cognitive impairment over the age of 60.Population Studied63 family caregivers were interviewed across eight states. About 89% of participants were female, 78% white, 10% black, 5% Asian, 3% biracial, 2% Native American. 36% of respondents reported that those they care for receive Medicaid.Principal FindingsThis analysis focused on several COVID‐related caregiver decisions: changes in care, challenges with care utilization and access, and policies or changes in care that were helpful during the pandemic were of focus. Four key themes emerged. First, family caregivers experienced communication challenges with long term care facilities often due to COVID‐19 restriction policies. They reported an inability to asses care quality, participate in medical appointments, or communicate with their loved ones. Second, some families chose to cease the care supports they were receiving. Participants cited concern about the virus itself, and about indirect pandemic effects such as their loved ones experiencing confusion, loneliness, and poor care. Third, many respondents expressed the desire to avoid future nursing care, and expressed hesitancy towards seeking HCBS until the pandemic is curbed. Finally, many caregivers reported that telemedicine and other remote health care interventions improved their workload and service access.ConclusionsWe examined how the pandemic has impacted decision‐making among caregivers of older adults with cognitive impairments. Family caregivers experienced significant concern about COVID‐19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers have also shown flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care interventions such telemedicine, no‐contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload.Implications for Policy or PracticeGiven the persistent challenges posed by COVID‐19, long term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. First, there is a need to expand and continue telemedicine and other remote healthcare interventions, while adapting these technologies to the needs of families. Second, bolstering communication supports when on lock down in nursing facilities may reduce confusion and feelings of isolation. Finally, procedures are needed for safe and trusted pathways to utilize HCBS and nursing care during a pandemic including sufficient PPE, increased staffing, and utilization of evidence‐based protocols.Primary Funding SourceNational Institutes of Health.

Introduction

We are delighted to introduce the second issue of volume 2. We are beginning to see a pattern in the various submissions that we receive for the journal. While the editors have backgrounds in Literary Studies, Sociology, and Anthropology, the journal has appealed to the traditional social sciences and has reached out and connected to other disciplines, such as Art, Film Studies, Historical Studies, and Literary Studies. The journal is therefore beginning to see the making sense of gender and sexuality, moving beyond the established and perhaps somewhat hegemonic disciplinary focus on sociology and psychology. It is also important to keep in mind that when we say “social sciences,” we are talking about not only a range of different disciplines, but also heterogeneous approaches within those disciplines. For example, a journal recently advised an author that they would only accept qualitative research papers if the minimal sample was 35. Although the logic and explanation for this number in terms of saturation of themes and rigor of analysis appeals to themes of validity and reliability (although why 35 and not 36 or 34 remains unexplained), the idea of research on gender and sexuality as being framed through the scientific method still endures. This is not to say that we need to abandon approaches that aspire to the scientific method. On the contrary, such approaches are important, often providing systematic mapping and documenting of gendered and sexual processes and practices. By being grounded in the possibilities that the existing epistemologies are able to deliver, they provide an internal logic of certainty and a feeling of confidence. However, the criteria of validity and reliability in themselves limit what can or cannot be captured. This is part of the reason why we welcome submissions from the Arts and Humanities, as much as we do submissions from all other disciplines: we argue that they are able to open up and explore gender and sexuality differently. We are hopeful that we can develop the journal further to facilitate a platform to share a wide range of driven disciplinary perspectives and support a range of epistemologies.

MP51-10 UNEXPECTED CHALLENGES FOR CAREGIVERS OF CHILDREN WITH NEUROGENIC BLADDER

You have accessJournal of UrologyPediatric Urology IV (MP51)1 Sep 2021MP51-10 UNEXPECTED CHALLENGES FOR CAREGIVERS OF CHILDREN WITH NEUROGENIC BLADDER Kassie Flewelling, Vijaya Vemulakonda, Cindy Buchanan, Gemma Beltran, and Sarah Hecht Kassie FlewellingKassie Flewelling More articles by this author , Vijaya VemulakondaVijaya Vemulakonda More articles by this author , Cindy BuchananCindy Buchanan More articles by this author , Gemma BeltranGemma Beltran More articles by this author , and Sarah HechtSarah Hecht More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002077.10AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Neurogenic bladder is a chronic medical condition requiring multifaceted care. Due to the complexity of care in a pediatric population, nonadherence to medical recommendations is associated with increased morbidity, mortality, and medical costs. To ensure understanding and adherence to recommendations, the implications of the disease and its management for patients and caregivers must be clear. The purpose of this study was to characterize challenges faced by caregivers of children with neurogenic bladder which may affect their adherence to recommendations. METHODS: A multidisciplinary team of qualitative researchers conducted semi-structured phone interviews with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a large, tertiary pediatric referral center. Purposeful sampling was used to ensure representation based on race, gender of the child and of the primary caregiver, primary language, distance from the medical center, and medical complexity of the child. Interviews were recorded, transcribed and, when applicable, professionally translated. Transcribed data were analyzed using a team-based inductive grounded-theory approach. Thematic analysis of coded data was facilitated by ATLAS.ti software. RESULTS: Primary caregivers for 25 patients with neurogenic bladder were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three themes emerged surrounding the topic of unexpected challenges: 1. caregiver sacrifice, 2. issues related to supplies, and 3. the chronic nature of the disease. While most were aware of the need for catheterization and potential for surgical management, caregivers overwhelmingly felt that managing the neurogenic bladder was more difficult than anticipated. CONCLUSIONS: Caregivers of children with neurogenic bladder report their role is more difficult than they expected. In particular, many identify feeling unprepared for the level of sacrifice required, issues surrounding medical supplies, and the chronicity of the disease. Identifying the unexpected challenges as perceived by caregivers will help pediatric urologists address gaps in counseling and expectation-setting and has the potential to improve adherence to recommendations, thereby improving patient outcomes. Source of Funding: Center for Children's Surgery Ponzio Award © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e900-e900 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Kassie Flewelling More articles by this author Vijaya Vemulakonda More articles by this author Cindy Buchanan More articles by this author Gemma Beltran More articles by this author Sarah Hecht More articles by this author Expand All Advertisement PDF downloadLoading ...

Perspectives on the Gamification of an Interactive Health Technology for Postoperative Rehabilitation of Pediatric Anterior Cruciate Ligament Reconstruction: User-Centered Design Approach.

BackgroundPediatric and adolescent athletes are a large demographic undergoing anterior cruciate ligament reconstruction (ACL-R). Postoperative rehabilitation is critical, requiring patients to complete home exercise programs (HEPs). To address obstacles to HEP adherence, we developed an interactive health technology, interACTION (iA), to monitor knee-specific rehabilitation. iA is a web-based platform that incorporates wearable motion sensors and a mobile app that provides feedback and allows remote monitoring. The Wheel of Sukr is a gamification mechanism that includes numerous behavioral elements. ObjectiveThis study aims to use a user-centered design process to incorporate behavioral change strategies derived from self-management theory into iA using the Wheel of Sukr, with the aim of influencing patient behavior.MethodsIn total, 10 athletes aged 10-18 years with a history of ACL-R were included in this study. Patients were between 4 weeks and 1 year post–ACL-R. Participants underwent a 60-minute triphasic interview. Phase 1 focused on elements of gaming that led to high participation and information regarding surgery and recovery. In phase 2, participants were asked to think aloud and rank cards representing the components of the Wheel of Sukr in order of interest. In phase 3, the patients reviewed the current version of iA. Interviews were recorded, transcribed, and checked for accuracy. Qualitative content analysis segmented the data and tagged meaningful codes until descriptive redundancy was achieved; next, 2 coders independently coded the data set. These elements were categorized according to the Wheel of Sukr framework. The mean age of participants was 12.8 (SD 1.32) years, and 70% (7/10) were female. Most participants (7/10, 70%) reported attending sessions twice weekly. All patients were prescribed home exercises. Self-reported HEP compliance was 75%-100% in 40% (4/10), 50%-75% in 40% (4/10), and 25%-50% of prescribed exercises in 20% (2/10) of the participants.ResultsThe participants responded positively to an app that could track home exercises. Desirable features included exercise demonstrations, motivational components, and convenience. The participants listed sports specificity, competition, notifications, reminders, rewards, and social aspects of gameplay as features to incorporate. In the Wheel of Sukr card sort exercise, motivation was ranked first; self-management, second; and growth, esteem, and fun tied for the third position. The recommended gameplay components closely followed the themes from the Wheel of Sukr card sort activity.ConclusionsThe participants believe iA is a helpful addition to recovery and want the app to include exercise movement tracking and encouragement. Despite the small number of participants, thematic saturation was reached, suggesting the sample was sufficient to obtain a representative range of perspectives. Future work will implement motivation; self-management; and growth, confidence, and fun in the iA user experience. Young athlete ACL-R patients will complete typical clinical scenarios using increasingly developed prototypes of the gamified iA in a controlled setting.

Clinicians’ Perspective on Factors Affecting Pain Management among Patients with Terminal Illness Admitted at Longisa County Referral Hospital, Kenya.

The study sought to explore clinicians’ perspective on factors affecting pain management on terminally ill patients admitted at Longisa County Referral Hospital in southern part of Rift Valley region in Kenya. Factors that facilitates pain management are: use of WHO guidelines, education of clinicians on pain management and incorporating pain assessment as the fifth vital sign. Conversely, barriers leading to under treatment of pain include: lack of knowledge on pain management, lack of pain assessment tools/guidelines, misconceptions of narcotics among clinicians, lack of essential medicines, understaffing, patients and family beliefs of pain, inconsistent supply of opioids and restrictive regulation of opioids. This was an exploratory qualitative study in which in-depth interviews were conducted with clinicians who were purposively sampled to include those who worked in areas with palliative care patients until thematic saturation was achieved. Data was analyzed through thematic content analysis and presented in form of narrative. The study revealed that clinician do not treat pain adequately. Additionally, significant knowledge deficiencies exist regarding current principles of pain management practices and presence of beliefs that interfere with optimal care. Significant knowledge deficiencies are evident regarding currently accepted principles of pain management practices, as well as beliefs and lack of essential drugs including opioids which hinders pain management therefore clinicians must be educated continuously especially with ongoing educational sessions with a focus on knowledge of current pain management principles.