Health care providers' perceptions of burnout and moral distress during the COVID-19 pandemic: A qualitative study from Saskatchewan, Canada.

OBJECTIVES: This study sought to describe feelings and perceptions of burnout and moral distress experienced by health care providers in the Canadian province of Saskatchewan during the COVID-19 pandemic. METHODS: This study was part of a larger mixed methods project, and we here report on the qualitative results relating to burnout and moral distress experienced by medical doctors, registered nurses and respiratory therapists. We used an exploratory, qualitative descriptive design involving one-one-one interviews with 24 health care providers. Interview data were analysed using a reflexive thematic analysis approach. RESULTS: We identified three overarching themes each for health care provider burnout and moral distress. Interviews revealed that providers experienced burnout through (i) increased expectations and (ii) unfavourable work environments, which led most of them to recognise (iii) a need to step back. Regarding moral distress, key themes were: (i) a sense of compromised care, (ii) feelings of bumping heads with authorities and patient families, and (iii) seeing patients make difficult decisions. CONCLUSION: Our study found that medical doctors, registered nurses and respiratory therapists working during the COVID-19 pandemic experienced and continue to experience significant burnout and moral distress. This was often driven by both institution- and system-level factors. There is a need for sustained investment to build and support a motivated health care workforce to prepare for future pandemics and health emergencies.

Exploring Journey Maps as Products From Qualitative Research: Application Through Food Insecure Veterans' Experiences.

Journey maps are graphic representations of participant, user, customer, or patient experiences or "journeys" with a particular phenomenon, product, business, or organization. Journey maps help visualize complex pathways and phases in accessible, digestible ways. They also capture emotions, reactions, and values associated with the processes participants undergo, complemented by images or quotes from participants. Here, we outline the foundations of journey maps in research and in practice settings. Our goal is to describe journey maps to researchers new to the product and emphasize the novelty and utility of journey maps as visual products from qualitative research particularly in a health setting. To explore journey maps-including their benefits, drawbacks, and relevance-we discuss examples including our own process for designing a journey map of food insecure Veterans' experiences using qualitative, in-depth interviews and supported by member checking. Our journey map depicts food insecurity as a repetitive process, a unique contribution given that many journey maps are designed with discrete starting and stopping points. We conclude by discussing the novelty of journey maps as innovative products that researchers can use to identify opportunities for process improvements and innovation using multiple data sources or methods.

Antiracism in appreciative inquiry: Generative tensions and collective reflexivity.

Appreciative inquiry is an action research methodology focused on revealing an organization's positive core. As a cross-racial team of antiracist researchers, we were drawn to appreciative inquiry due to its congruences with community-based research perspectives on power-sharing and co-constructing knowledge. Our collaborative reflexivity brought us to question whether Appreciative inquiry's hyper-focus on positivity would fit our antiracist research paradigm. We articulate reflections of how antiracism theory informed our approach to Appreciative inquiry in a study on the experiences of predominantly racialized settlement workers in schools during the COVID-19 pandemic. We explain how we negotiated tensions between Appreciative inquiry's focus on positivity and our antiracist framing, in a Canadian settler colonial context where institutional expectations to ignore racism and collapse diversity, loom large. Without a theoretical framework that attends to racism and power, Appreciative inquiry may not fulsomely address participants' transnational knowledges, nor experiences outside of a positive/negative binary. In our elucidation of how critical reflexivity on racism allowed us to integrate antiracism into Appreciative inquiry, we demonstrate the value of first-person action research for expanding the social justice aims of research.

Responsive patient care in Israel: A qualitative study of hospital rules and regulations.

Hospital rules and regulations can contribute to standardizing care, streamlining processes, and improving the quality of care. Over the past decade, hospitals in Israel have introduced written rules and regulations for staff that provide guidance on quality control, patient safety, and the patient-provider relationship. This study aimed to explore how these written guidelines, when implemented, can promote responsive care for inpatients. Using a thematic analysis, the study analyzed the content of staff guidelines from six Israeli hospitals. The analysis found that hospital rules and regulations provide similar, relatively precise instructions with regard to improving the responsiveness to and dignity of care of patients. The guidelines address three essential aspects of responsiveness - disclosing medical information and respecting the patients' autonomy and physical space. The guidelines highlight that healthcare providers should implement security measures to safeguard medical information, respect patients' autonomy, involve patients in decision-making, and provide adequate physical space to maintain their privacy and modesty. The guidelines contribute to ensuring patients' legal and ethical rights. Policymakers should consider introducing and implementing the dimensions of responsiveness that were stressed by Israeli hospitals' rules and regulations. Further research is needed to confirm the relevance of the various rules and regulations for improving the quality of care provided to patients.

Compassion in Italian palliative care: Investigating healthcre professionals' perspectives using focus groups.

Compassion, a complex response aimed at alleviating suffering, plays a crucial role in healthcare professionals' (HCPs) patient care, especially in palliative settings. This study explored compassion in Italian palliative care HCPs using focus groups. A total of 52 palliative care HCPs participated in this study across five focus groups. The transcripts of the discussions were subjected to content analysis. Compassion emerged as "being with someone," a relational dimension deeply influenced by various factors, including patients, caregivers, work environment, and HCPs themselves. While often perceived as innate, the participants expressed their potential to be nurtured through training and group discussions. Compassion is integral to the HCP-patient relationship, shaped by multifaceted aspects. These findings emphasize the importance of cultivating and enhancing compassion through training and group discussions.

Women and midwives' experiences of an audio-visual enhanced hospital birth environment: An interview study.

PROBLEM: Most hospital birth environments remain clinical in appearance and are not attuned to the neurohormonal processes that orchestrate labour and birth. Hospital environments are therefore not aligned with the innate needs of a woman to feel safe and secure in the place where she gives birth. BACKGROUND: Research has suggested that audio-visual effects such as nature images and sounds may help promote physiological labour in women at low risk of complications. This study aimed to explore the experiences of women labouring in a hospital birth environment enhanced with audio-visual technology, regardless of pregnancy complexity and use of interventions. Experiences of midwives providing one-to-one midwifery care in this environment were also explored. METHODS: Transcripts of semi-structured interviews conducted with thirty-two women and six midwives were analysed thematically. FINDINGS: Universally, women reported that access to audio-visual imagery and soundtracks in the birth environment positively influenced their experience of labour. Nature images and sounds during labour helped create serenity and calmness within the woman and her surroundings, allowing her to relax and focus inwards. Midwives used this technology to create a calm and psychologically safe environment for women giving birth in the hospital. Projecting nature images and sounds became a medium for midwives to create ambience and instil calmness in the clinical environment. Midwives also reported observing positive impacts on the behaviours of other clinicians entering the room. CONCLUSION: Audio-visual enhancement of the hospital birth environment was found to enhance women's birth experiences and support midwives providing woman-centred care.

Understanding Experiences of Headache-Sufferers Attending Emergency Departments Through Photovoice.

OBJECTIVE: Our aim was to explore the experiences of individuals receiving emergency department (ED) care for acute headaches. BACKGROUND: Patients with headache exacerbations commonly present to EDs. This study explored the experiences of adult patients during the exacerbation period, specifically using photovoice. METHODS: Recruited from two urban EDs in Alberta, Canada, participants with primary headaches took photographs over 3-4 weeks and subsequently completed a 60-90 minute, one-on-one, in-person photo-elicitation interview. Interviews were audio recorded, transcribed and thematically analyzed alongside photographs. RESULTS: Eight participants (six women) completed the study. The average age was 42 years (standard deviation: 16). Five themes emerged: (1) the struggle for legitimacy in light of the invisibility of their condition; (2) the importance of hope, hopelessness and fear in the day-to-day life of participants; (3) the importance of agency and becoming "your own advocate"; (4) the struggle to be and be seen as themselves despite the encroachment of their headaches; and (5) the realities of "good" and "bad" care in the ED. Participants highlighted examples of good care, specifically when they felt seen and believed. Additionally, some expressed the acute care space itself being a beacon of hope in the midst of their crisis. Others felt dismissed because providers "know it's not life or death." CONCLUSIONS: This study highlighted the substantial emotional impact that primary headaches have on the lives of participants, particularly during times of exacerbation and while seeking acute care. This provides insight for acute care settings and practitioners on how to effectively engage with this population.

A qualitative exploration of the COVID-19 pandemic on health and nutrition behaviours during the first 1000 days in Sri Lanka.

This study sought to understand reported impacts of the COVID-19 pandemic on maternal and child health and nutrition behaviours during the first 1000 days of life. This qualitative and participatory substudy was embedded within mixed methods formative research conducted during 2020-2022 across two urban, three rural and one estate sector site in Sri Lanka. Semi-structured interviews among caregivers of children aged 6-23 months (n = 34), influencers of caregivers, such as health workers (n = 37), leaders (n = 10) and pregnant women (n = 20) were conducted. Participatory workshops (n = 14) triangulated interview findings. Interview data were analyzed to identify salient themes using Dedoose. Numerical data from voting conducted in workshops were summed and triangulated with interview data. Findings suggest that the COVID-19 pandemic and imposed restrictions shaped maternal and child health and nutrition behaviours through a complex interplay of factors. Imposed restrictions and changes to the food system contributed to temporary unemployment for wage workers and reduced purchasing power to maintain food security for vulnerable households. While deciding whether to seek care, fears of infection prevented usual care-seeking decisions. Also, reduced incomes and disrupted public transportation made transport to health care facilities for antenatal care services difficult. Once women reached facilities, medical services and quality of care were negatively impacted. Implementing expanded community-based services during home visits focused on the first 1000 days and beyond was one effective strategy to maintain maternal and child health and nutrition during the early pandemic in Sri Lanka.

Treatment "non-responders": the experience of short-term psychoanalytic psychotherapy among depressed adolescents, their parents and therapists.

Introduction: Short-term psychoanalytic psychotherapy (STPP) is an evidence-based treatment for adolescents with depression, but like all treatment approaches, not all patients benefit from it. Previous investigations of the process of STPP have mostly focused on successful cases, and only a few studies have included the perspectives of young people, their parents, and therapists in the understanding of treatment non-response. Methods: Semi-structured interviews were carried out with young people who were considered "non-responders" to STPP, as well as with their parents and therapists. These cases were analyzed using a descriptive-interpretative approach. Results: The data analysis revealed three themes: (1) Therapy as a safe space; (2) Can short-term psychotherapy ever be enough?; and (3) Therapists making links and connections that did not make sense to the young people. Discussion: This study's findings indicate that "poor outcome" psychotherapy does not necessarily equate to a "poor experience" of psychotherapy, with different stakeholders appreciating the treatment setting as a "safe space." However, they also suggest that some felt that a relatively short-term treatment could not lead to substantial change and that young people in STPP might have a more negative view of their outcomes compared to their parents and therapists. Finally, the findings indicate that some interventions made by clinicians in STPP feel wrong or do not make sense to young people, potentially affecting the therapy process.

Implementing a Medicines at Transitions Intervention (MaTI) for patients with heart failure: a process evaluation of the Improving the Safety and Continuity Of Medicines management at Transitions of care (ISCOMAT) cluster randomised controlled trial.

BACKGROUND: Heart failure is a major global health challenge incurring a high rate of mortality, morbidity and hospitalisation. Effective medicines management at the time of hospital discharge into the community could reduce poor outcomes for people with heart failure. Within the Improving the Safety and Continuity Of Medicines management at Transitions of care (ISCOMAT) programme, the Medicines at Transitions Intervention (MaTI) was co-designed to improve such transitions, with a cluster randomised controlled trial to test effectiveness. The MaTI includes a patient toolkit and transfer of discharge medicines information to community pharmacy. This paper aims to determine the degree to which the intervention was delivered, and identify barriers and facilitators experienced by staff for the successful implementation of the intervention. METHODS: The study was conducted in six purposively selected intervention sites. A mixed-methods design was employed using hospital staff interviews, structured and unstructured ward observations, and routine trial data about adherence to the MaTI. A parallel mixed analysis was applied. Qualitative data were analysed thematically using the Framework method. Data were synthesised, triangulated and mapped to the Consolidated Framework for Implementation Research (CFIR). RESULTS: With limited routines of communication between ward staff and community pharmacy, hospital staff found implementing community pharmacy-related steps of the intervention challenging. Staff time was depleted by attempts to bridge system barriers, sometimes leading to steps not being delivered. Whilst the introduction of the patient toolkit was often completed and valued as important patient education and a helpful way to explain medicines, the medicines discharge log within it was not, as this was seen as a duplication of existing systems. Within the CFIR the most applicable constructs were identified as 'intervention complexity' and 'cosmopolitanism' based on how well hospitals were networked with community pharmacies, and the availability of hospital resources to facilitate this. CONCLUSION: The MaTI was generally successfully implemented, particularly the introduction of the toolkit. However, implementation involving community pharmacy was more challenging and more effective communication systems are needed to support wider implementation. TRIAL REGISTRATION: 11/04/2018 ISRCTN66212970. https://www.isrctn.com/ISRCTN66212970 .

"We Need to Know These Things": Use Cases for Combined Social and Clinical Data Among Primary Care-Based Clinical and Social Care Providers.

INTRODUCTION/OBJECTIVES: Primary care organizations are increasingly collecting data on patients' social risks, bringing forth an unprecedented opportunity to present combined health and social data that clinical and social care providers could leverage to improve patient care and outcomes. Little is known, however, about how these data could be used and what combinations of specific data elements are most helpful. We explored how primary care staff who provide clinical or social care services view potential benefits of and use cases for combined patient-level clinical and social data. METHODS: We conducted qualitative interviews or focus groups with 39 social and clinical care providers representing 6 healthcare organizations in San Diego County, California. Interviews were transcribed and analyzed using a deductive thematic analysis approach. RESULTS: Overall, both clinical and social care providers noted the value of access to both types of data. Participants highlighted 3 benefits from integrating social and clinical data. The data could: (1) offer providers a more holistic view of patients' circumstances; (2) strengthen their ability to tailor care to patients' medical and social conditions concurrently; and (3) enhance coordination across care team members. Interviewees cited specific examples of ways social and clinical data could be paired to improve care. CONCLUSIONS: Social and clinical care providers alike envisioned multiple uses and benefits of accessing combined individual-level clinical and social data, highlighting the potential for practice and policy innovations to facilitate access and uptake of combined data. Future research should focus on ways to increase accessibility of cross-sector data and evaluate the impact of care informed by combined data on patient social and health outcomes.

The Experience of Hospitalisation for People Living With Dementia: A Qualitative Exploration of How Context Shapes Experiences.

INTRODUCTION: Dementia has become an increasingly pressing issue in healthcare systems, and acute care settings such as hospitals have been shown to be particularly problematic for people living with dementia. People living with dementia are hospitalised at higher rates than those without and often have poor experiences and outcomes of hospitalisation. To support the evolution of hospital systems to better meet the needs of people living with dementia, it is important to consider the relationship between the context of the hospital and the experiences of people living with dementia and their caregivers. The term context refers to the environment and conditions that shape experiences and includes elements such as policies, procedures, design and social norms. A greater understanding of the relationship between the hospital context and the experiences of people living with dementia will support the future development of interventions to modify contextual elements to improve the experiences of people living with dementia. Our aim was to explore the relationship between the experiences of people living with dementia and their caregivers in hospital, and the contextual elements of the hospital. METHODS: In this interpretive descriptive study, we conducted interviews with people living with dementia and caregivers of people living with dementia about their experiences in hospital. Interviews were conducted with people living with dementia (n = 3), caregivers of people living with dementia (n = 8) and one dyad of a person living with dementia and their caregiver (n = 1) about the hospitalisation of the person living with dementia. Using inductive and deductive methods of analysis, we describe contextual factors that shape their experiences. RESULTS: Our findings demonstrate how the hospital context shaped the experiences of people living with dementia and their caregivers while the person living with dementia was hospitalised. The themes reflect elements of the hospital context: communication systems, the value of caregivers, the focus on acute physical needs, staff capacity, the physical environment and normalised practices. The findings suggest that there are aspects of the hospital context that can be modified to influence the experiences of people living with dementia and their caregivers. CONCLUSION: This study demonstrates how the context of hospital shapes the experiences of people living with dementia and their caregivers and points to aspects of the context that health system leaders could explore to begin to improve the capacity of hospitals to support people living with dementia. IMPLICATIONS FOR PRACTICE: The study provides evidence of the need for health system leaders and practitioner to explore how the hospital context shapes the experiences of people wtih dementia and their caregivers, and begins to explore ways that contextual changes can improve their experiences.

Using Freely Generated Labels Instead of Rating Scales to Assess Emotion in Everyday Life.

To measure emotion in daily life, studies often prompt participants to repeatedly rate their feelings on a set of prespecified terms. This approach has yielded key findings in the psychological literature yet may not represent how people typically describe their experiences. We used an alternative approach, in which participants labeled their current emotion with at least one word of their choosing. In an initial study, estimates of label positivity recapitulated momentary valence ratings and were associated with self-reported mental health. The number of unique emotion words used over time was related to the balance and spread of emotions endorsed in an end-of-day rating task, but not to other measures of emotional functioning. A second study tested and replicated a subset of these findings. Considering the variety and richness of participant responses, a free-label approach appears to be a viable as well as compelling means of studying emotion in everyday life.

Implementation of family centered substance use treatment for pregnant and postpartum people to prevent the intergenerational transmission of adverse childhood experiences.

BACKGROUND: Family-centered substance use treatment (FCSUT) may have benefits for parents, children, and their families, and have the potential to decrease adverse childhood experiences (ACEs). Few treatment programs use FCSUT, even those that aim to serve pregnant and postpartum people. OBJECTIVES: To understand how families are integrated into FCSUT services for pregnant and postpartum people, explore the perceived benefits of FCSUT for families and parents, and identify challenges to implementing FCSUT. PARTICIPANTS AND SETTINGS: Interviews with 26 administrators and providers working at FCSUT facilities and 27 pregnant and postpartum people who were currently receiving or had previously received services in the last two years from FCSUT facilities. METHODS: A qualitative thematic analysis was conducted using data from semi-structured in-depth interviews. RESULTS: The analysis revealed four themes: (1) the importance of families in treatment and recovery; (2) benefits of FCSUT for parents; (3) benefits of FCSUT for families; and (4) additional areas for FCSUT program growth. Despite reported benefits (e.g., improving parenting and communication skills; promoting healthy relationships with children, partners, and other family members; and facilitating a support system for long-term recovery), facilities and families face challenges integrating whole family units into treatment. CONCLUSIONS: FCSUT may offer a range of benefits to pregnant and postpartum people and their families. Addressing challenges, such as fully integrating all family members into treatment, may improve FCSUT programs. Meeting the needs of all family members during treatment supports safe, stable, and nurturing relationships and environments for children that may decrease ACEs.

Evaluating the implementation of weekly rifapentine-isoniazid (3HP) for tuberculosis prevention among people living with HIV in Uganda: A qualitative evaluation of the 3HP Options Trial.

Three months of isoniazid-rifapentine (3HP) is being scaled up for tuberculosis (TB) preventive treatment (TPT) among people living with HIV (PLHIV) in high-burden settings. More evidence is needed to identify factors influencing successful 3HP delivery. We conducted a qualitative assessment of 3HP delivery nested within the 3HP Options Trial, which compared three optimized strategies for delivering 3HP: facilitated directly observed therapy (DOT), facilitated self-administered therapy (SAT), and patient choice between facilitated DOT and facilitated SAT at the Mulago HIV/AIDS clinic in Kampala, Uganda. We conducted 72 in-depth interviews among PLHIV purposively selected to investigate factors influencing 3HP acceptance and completion. We conducted ten key informant interviews with healthcare providers (HCPs) involved in 3HP delivery to identify facilitators and barriers at the clinic level. We used post-trial 3HP delivery data to assess sustainability. We conducted an inductive thematic analysis and aligned the emergent themes with the RE-AIM framework dimensions to report implementation outcomes. Understanding the need for TPT, once-weekly dosing, shorter duration, and perceived 3HP safety enhanced acceptance overall. Treatment monitoring by HCPs and reduced risk of HIV status disclosure enabled DOT acceptance. Dosing autonomy enabled SAT acceptance. Switching between DOT and SAT as required enabled acceptance for patient choice. Dosing reminders, reimbursement for clinical visits, and social support enabled 3HP completion; pill burden, side effects, and COVID-19-related treatment restrictions hindered completion. All HCPs were trained and participated in 3HP delivery with high fidelity. Training, care integration, and collaboration among HCPs enabled, whereas initial concerns about 3HP safety among HCPs delayed 3HP adoption and implementation. SAT was maintained post-trial; DOT was discontinued due to inadequate ongoing financial support beyond the study period. Facilitated delivery strategies made 3HP treatment convenient for PLHIV and were feasible and implemented with high fidelity by HCPs. However, the costs of 3HP facilitation may limit wider scale-up.

Keeping medical information safe and confidential: a qualitative study on perceptions of Israeli physicians.

BACKGROUND: Patients expect their information to remain confidential, and physicians have a legal and ethical obligation to keep it this way. Confidentiality is not just a legal requirement but a crucial element in establishing trust between patients and healthcare providers. Patients must feel confident that their personal and medical information is kept confidential and shared only with those who need to know. Previous studies have primarily concentrated on patients' perceptions of medical confidentiality, data privacy, and data protection issues. However, research on the practical practices and perceptions of medical confidentiality among hospital physicians is scant, underscoring the need for a deeper understanding of this critical issue. METHODS: Through qualitative methods and as part of a large-scale study on aspects of patient dignity and responsiveness in Israel, physicians shared their views and practices on managing medical information. RESULTS: The study revealed the practical challenges physicians face in upholding various aspects of data protection within hospital settings. These challenges, strategies, and deviations from data protection principles that physicians discussed are of significant practical relevance. The importance of patient consent and the practical measures for safeguarding patient information were also highlighted. While physicians acknowledged the importance of protecting patient information, they also grappled with the realities of doing so in a complex healthcare environment. In future healthcare policies, it is critical to ensure robust measures are in place to safeguard and uphold medical confidentiality. These can include specific measures to increase compliance, such as regularly monitoring compliance with confidentiality policies, producing safe and anonymous channels to voice concerns, and enforcing consequences for any breaches to ensure accountability. CONCLUSIONS: While protecting medical information has emerged as an important goal, it is equally crucial to strike a balance between the need to share information to advance and provide quality medical care. Physicians and policymakers must navigate this delicate balance. Additionally, organizations should strengthen compliance to enhance their monitoring and enforcement of confidentiality policies. Ineffective implementation of medical confidentiality leads to theoretical guidelines that do not translate effectively into practice.

Parent and adolescent perspectives on a novel transdisciplinary model of healthcare delivery for type 1 diabetes.

Objective: We aimed to obtain pre-adolescent/adolescent and parent input on a proposed transdisciplinary model for routine type 1 diabetes (T1D) healthcare in which an advanced practice nurse, dietitian, and psychologist with expertise in T1D and extensive cross-discipline training co-deliver care during quarterly T1D care visits using a family-focused approach. Methods: Participants were 17 parent-youth dyads plus one additional adolescent who responded to open-ended questions about the structure and format of the proposed transdisciplinary care model via an online, private social network. A six-member coding team developed and revised a codebook, coded question responses through iterative cycles of inductive coding, and distilled major recurring themes to obtain perspectives on the transdisciplinary care model and feedback on improving the model. Results: We identified nine themes regarding reactions to our proposed transdisciplinary care model, which fell into three broad categories: 1) General Perceptions of Transdisciplinary Care (e.g., Transdisciplinary Care may facilitate improved communication and collaboration among providers and result in more holistic care); 2) Perceptions about Transdisciplinary Care Providers (e.g., Perspectives on the inclusion of dietitians and psychologists as members of the transdisciplinary care team were mixed); and 3) Suggestions for Improving the Transdisciplinary Care Model (e.g., Ensure care is patient/family centered and holistic). Conclusions: The present findings provided important feedback to modify our transdisciplinary care model and on parent and youth preferences for T1D healthcare delivery.

An epistemology of empathy and modern methods of social research: Intimations of the mind and early Chicago sociology.

Empathic qualitative methods have become emblematic of early Chicago sociology. Yet methods were not formalized through the early 20th century and empathy was not in usage as a term. Only at mid-20th century did methodological formalization in sociology begin to occur, and an additional quarter-century passed before writing about empathy in sociological methods began to crystallize. Nevertheless, a portion of early Chicago sociologists, assimilating pragmatist thought, established a framework for the deployment of empathic acumen. Because empathy involves understanding others, it is argued that it is central to the study of social life. The article contends that understanding empathy must be as central to the social scientist's knowledge as it is to the effective deployment of research methods: a competent quest to generate knowledge about social life is premised on empathy. To heighten awareness of empathy, an epistemology is necessary. To this end, the article examines empathy as situated by a set of organizational and historical conditions that account for its origin and ascendance as a prescriptive characteristic of sociological work. The author draws attention to the significance of suffering and suggests that its religious precepts are transmuted for the conditions under which sociology develops in turn-of-the-century Chicago.

Characterizing medical decision-making in sickle cell disease during childhood: Qualitative perspectives of caregivers.

INTRODUCTION: Sickle cell disease (SCD) is the most common genetic disorder among children. As the most common type of SCD, sickle cell anemia (SCA) is associated with severe complications across the lifespan. As parents/caregivers hold primary disease management responsibility during childhood, their involvement in disease management activities, including medical decision-making, is critical to successful and timely management of pediatric SCD. However, the processes through which caregivers make SCD-related decisions remain unknown. The current paper examined caregivers' decision-making processes and priorities when managing their child's SCD. METHODS: Parents and primary caregivers (N = 27) of children with SCA (ages 0-12) completed individual semi-structured qualitative interviews exploring links between caregivers' decision-making and both daily and ongoing SCA management practices. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis. RESULTS: Participating caregivers were primarily Black or African American (88.9%), mothers (81.5%), publicly insured (55.6%), and single (51.9%). Caregivers described medical decision-making across acute symptom response, preventive disease management, and treatment initiation and/or discontinuation. Across these contexts of disease management, caregivers overarchingly prioritized protecting and improving their child's quality of life. Caregivers' medical decision-making processes were influenced by their SCA management experience, acquisition of SCA knowledge, and trust in medical providers. The extent to which these influences impacted caregivers' decision-making varied based on disease severity, disease management experience, and time since diagnosis. DISCUSSION: Findings highlight how processes underlying caregivers' decision-making are directly influenced and informed by caregivers' lived experiences. Future work should develop provider-initiated collaborative interventions to support medical decision-making.

Gaps in communication theory paradigms when conducting implementation science research: qualitative observations from interviews with administrators, implementors, and evaluators of rural health programs.

BACKGROUND: Communication is considered an inherent element of nearly every implementation strategy. Often it is seen as a means for imparting new information between stakeholders, representing a Transaction orientation to communication. From a Process orientation, communication is more than information-exchange and is acknowledged as being shaped by (and shaping) the individuals involved and their relationships with one another. As the field of Implementation Science (IS) works to strengthen theoretical integration, we encourage an interdisciplinary approach that engages communication theory to develop richer understanding of strategies and determinants of practice. METHODS: We interviewed 28 evaluators, 12 implementors, and 12 administrators from 21 Enterprise-Wide Initiatives funded by the Department of Veteran Affairs Office of Rural Health. Semi-structured interviews focused on experiences with implementation and evaluation strategies. We analyzed the interviews using thematic analysis identifying a range of IS constructs. Then we deductively classified those segments based on a Transaction or Process orientation to communication. RESULTS: We organized findings using the two IS constructs most commonly discussed in interviews: Collaboration and Leadership Buy-in. The majority of segments coded as Collaboration (n = 34, 74%) and Leadership Buy-in (n = 31, 70%) discussed communication from a Transaction orientation and referred to communication as synonymous with information exchange, which emphasizes the task over the relationships between the individuals performing the tasks. Conversely, when participants discussed Collaboration and Leadership Buy-in from a Process orientation, they acknowledged both constructs as the result of long-term efforts to develop positive relationships based on trust and respect, and emphasized the time costliness of such strategies. Our findings demonstrate that participants who discussed communication from a Process orientation recognized the nuance and complexity of interpersonal interactions, particularly in the context of IS. CONCLUSIONS: Efficient, reliable information exchange is a critical but often overemphasized element of implementation. Practitioners and researchers must recognize and incorporate the larger role of communication in IS. Two suggestions for engaging a Process orientation to communication are to: (a) use interview probes to learn how communication is enacted, and (b) use process-oriented communication theories to develop interventions and evaluation tools.