"All I Can Say Is Thank You": A Qualitative Study of Gratitude in the NICU Before and During COVID-19.

BACKGROUND: COVID-19-associated visitor restrictions altered parents' involvement in their infant's care in the neonatal intensive care unit (NICU). PURPOSE: The purpose of this article is to explore how restrictions affected parents' perceptions of experience in the NICU and to build a conceptual model of communication flow during times of crisis. METHODS: This qualitative study was set in a level III 52-bed NICU. Using data from an open-ended survey question, a multitiered thematic analysis was used. RESULTS: Four broad themes emerged: communication, gratitude, release, and containment of emotionality. These 4 themes interacted codependently and manifested differently as COVID-related visitor policies were put in place. Parents' characterization of communication also varied depending on the visitation policies. Before COVID, parents were more likely to reflect on communication. During COVID, parents expressed more gratitude, while containing negative emotions-sometimes using gratitude to soften the blow of bad feedback. IMPLICATIONS FOR PRACTICE AND RESEARCH: Our theoretical model suggests that gratitude may serve as a form of "reciprocal care" to providers during a period of crisis and extreme stress. Use of high-quality communication between providers and parents in the NICU is necessary to understand parental concerns or negative experience.

Engaging Social Media Influencers to Recruit Hard-to-Reach Populations.

BACKGROUND: Though clinical researchers have begun to use social media platforms to recruit participants, social media influencers are innovative community connectors to further expand recruitment reach, especially in hard-to-reach populations. OBJECTIVES: The purpose of this methods article is to provide a step-by-step guide for engaging social media influencers for virtual participant recruitment. METHODS: There are multiple steps for researchers to follow, including preplanning, institutional review board approval, engaging with influencers, the pitch, the post, and results dissemination. DISCUSSION: Engaging social media influencers to recruit for clinical research demonstrates great potential to increase access to hard-to-reach populations. Several methodological considerations remain, and this article shares both opportunities and challenges to guide researchers in this technique.

Diabetes Identity: A Mechanism of Social Change.

Historically, diabetes identity has been examined at the individual level as it relates to clinical outcomes and self-management practices. Yet, identity is not experienced as an individually isolated phenomenon. The purpose of this study is twofold: (a) examine the social meaning of diabetes identity and (b) formulate a theoretical model of diabetes identity through a sociopolitical lens. Adults living with diabetes engaged in a diabetes online community (N = 20) participated in a 60-minute semi-structured interview focused on social diabetes experiences and diabetes identity. Seven themes emerged related to illness, individuation, and culture, resulting in a novel theoretical model of diabetes identity: willingness to identify, tales of the un-sick, legends of the responsible, a tradition of change-making, sense of sameness, mystification of difference, and diabetes as a unifying social category. Our study extends previous literature focused on self-management practices and compliance, resulting in a theoretical model of diabetes identity centered around social change.

"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization.

IMPORTANCE: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community. OBJECTIVE: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition. DESIGN: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project. SETTING: ADA-PARC community partners across the United States. PARTICIPANTS: One hundred fifty-three adults with disabilities. OUTCOMES AND MEASURES: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community. RESULTS: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community. CONCLUSIONS AND RELEVANCE: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation. WHAT THIS ARTICLE ADDS: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community.

"I need to have a fulfilling job": A qualitative study of surgeon well-being and professional fulfillment.

BACKGROUND: Burnout, often regarded as an individual failing, rather than a systemic one, negatively impacts quality of care, patient safety and healthcare costs. Focusing on improving well-being can help mitigate burnout. This study examined protective factors that promote well-being and professional fulfillment in surgeons. METHODS: Using a purposive sample, 32 semi-structured 30-60-min interviews were conducted with surgeons of varying sub-specialties and rank. Abductive exploratory analysis was used to code and interpret interview transcripts and to build a conceptual model of surgeon well-being. RESULTS: Emergent protective factors were placed into one of three levels of implementation: individual, team-level, and institutional (figure). Individual factors for well-being included autonomy and adequate time to pursue non-clinical endeavors. Team-level factors consisted of adaptability, boundaries, and cohesion. Institutional factors related to diversifying performance evaluations and celebrating and recognizing individual value and contributions. CONCLUSIONS: The conceptual model developed from the results of this study highlights factors important to surgeons' professional well-being. This model can be used to guide quality improvement efforts.

The Underground Exchange of Diabetes Medications and Supplies: Donating, Trading, and Borrowing, Oh My!

BACKGROUND: The cost of diabetes medications and supplies is rising, resulting in access challenges. This study assessed the prevalence of and factors predicting underground exchange activities-donating, trading, borrowing, and purchasing diabetes medications and supplies. RESEARCH DESIGN AND METHODS: A convenience sample of people affected by diabetes was recruited online to complete a survey. Mixed method analysis was undertaken, including logistic regression to examine the relationship between self-reported difficulty purchasing diabetes medications and supplies and engagement in underground exchange activity. Thematic qualitative analysis was used to examine open-text responses. RESULTS: Participants (N = 159) self-reported engagement in underground exchange activities, including donating (56.6%), donation receiving (34.6%), trading (23.9%), purchasing (15.1%), and borrowing (22%). Such activity took place among a variety of individuals, including friends, family, coworkers, online acquaintances and strangers. Diabetes-specific financial stress predicted engagement in trading diabetes mediations or supplies (OR 6.3, 95% CI 2.2-18.5) and receiving donated medications or supplies (OR 2.8, 95% CI 1.1-7.2). One overarching theme, unmet needs, and three subthemes emerged: (1) factors influencing underground exchange activity, (2) perceived benefits of underground exchange activity, and (3) perceived consequences of underground exchange activity. CONCLUSION: Over half of the participants in this study engaged in underground exchange activities out of necessity. Providers must be aware about this underground exchange and inquire about safety and possible alternative resources. There is an urgent need to improve access to medications that are essential for life. Our study points to a failure in the US healthcare system since such underground exchanges may not be necessary if medications and supplies were accessible.

In-Person and Technology-Mediated Peer Support in Diabetes Care: A Systematic Review of Reviews and Gap Analysis.

PURPOSE: The purpose of this study is to report a systematic review of reviews of evidence and gaps focused on in-person and technology-mediated diabetes peer support and its impact on clinical, behavioral, and psychosocial outcomes. METHODS: We conducted a systematic review of reviews in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Reviews published in English from December 1978 through December 2018 examining clinical, behavioral, and psychosocial outcomes were included. The search yielded 167 reviews that were examined for inclusion/exclusion criteria. RESULTS: Nine systematic reviews and meta-analyses meeting criteria were included. Findings suggest peer support interventions can have a positive impact on clinical (A1C, blood pressure, cholesterol, weight), behavioral (diabetes knowledge, being active, healthy eating, medication management, self-management, self-efficacy, empowerment), and psychosocial (social support, health and diabetes distress, depression, quality of life) outcomes. Research gaps exist related to understanding the effects of emerging technology-mediated peer support modalities and the effects of peer support on gestational diabetes. CONCLUSION: Many clinical, behavioral, and psychosocial benefits related to in-person and technology-mediated peer support exist. Diabetes care and education specialists should incorporate and recommend peer support resources for people with diabetes.

Patient-Driven Diabetes Technologies: Sentiment and Personas of the #WeAreNotWaiting and #OpenAPS Movements.

BACKGROUND: Patients with diabetes have developed innovative do-it-yourself (DIY) methods for adapting existing medical devices to better fit individual needs. METHOD: A multiple method study used Symplur Analytics to analyze aggregated Twitter data of #WeAreNotWaiting and #OpenAPS tweets between 2014 and 2017 to examine DIY patient-led innovation. Conversation sentiment was examined between diabetes stakeholders to determine changes over time. Two hundred of the most shared photos were analyzed to understand visual representations of DIY patient-led innovations. Finally, discourse analysis was used to identify the personas who engage in DIY patient-led diabetes technologies activities and conversations on Twitter. RESULTS: A total of 7886 participants who generated 46 578 tweets were included. Sentiment analysis showed that 82%-85% of interactions around DIY patient-led innovation was positive among patient/caregiver and physician groups. Through photo analysis, five content themes emerged: (1) disseminating media and conference coverage, (2) showcasing devices, (3) celebrating connections, (4) providing instructions, and (5) celebrating accomplishments. Six personas emerged across the overlapping userbase: (1) fearless leaders, (2) loopers living it up, (3) parents on a mission, (4) the tech titans, (5) movement supporters, and (6) healthcare provider advocates. Personas had varying goals and behaviors within the community. CONCLUSIONS: #WeAreNotWaiting and #OpenAPS on Twitter reveal a fast-moving patient-led movement focused on DIY patient innovation that is further mobilized by an expanding and diverse userbase. Further research is indicated to bring technology savvy persons with diabetes into conversation with healthcare providers and researchers alike.

The Role and Value of Ongoing and Peer Support in Diabetes Care and Education.

PURPOSE: Increasing attention is being given to the challenges and emotional toll of managing diabetes. This Perspectives in Practice details the specialty's guiding documents for initial and ongoing support. It also defines various types of social support, including peer support, for optimal diabetes care. Focusing on peer support, this paper provides a review of the body of evidence demonstrating the value of peer support to improve clinical and behavioral outcomes. To achieve positive outcomes, it is optimal for people with diabetes to have access to ongoing support from their health care provider, including diabetes care and education specialists. They should also be made aware of, and given referral to options and opportunities for peer support. This Perspectives in Practice concludes with a call to action for diabetes care and education specialists to deliver to integrate and promote the value of peer support in the care they provide. CONCLUSION: Managing diabetes during the stages and ages of life is chronically challenging and complex. Various types of support offered by health care providers, including diabetes care and education specialists and others in the person's social support milieu, can positively affect emotional well-being. Health care providers should routinely assess their client's social supports and refer the person with diabetes and/or their caregivers to evidence-based types of peer support mutually determined to be of most value. Diabetes care and education specialists should increase their awareness of opportunities to integrate the value of and referral to peer support in their counseling and to gain greater insight into the diabetes-lived experience.

State of the Science: A Scoping Review and Gap Analysis of Diabetes Online Communities.

BACKGROUND: Individuals with diabetes are using online resources to engage in diabetes online communities to find diabetes-related support and information. The benefits and consequences of DOC (diabetes online community) use are unclear. This scoping review aims to map existing research focused on organic DOCs in which individuals affected by diabetes are interacting with peers. METHOD: A scoping review was conducted to comprehensively report and synthesize relevant literature published prior to 2018. Attention was paid to variations in study design, DOC user and platform characteristics, and potential or actual benefits and consequences. RESULTS: Of the 14 486 titles identified, 47 articles met the inclusion criteria and were included in this scoping review. No overt definition of the DOC could be identified. Perceived or actual benefits associated with DOC use can be broadly categorized as clinical, behavioral, psychosocial and community outcomes. Perceived, potential, or actual consequences associated with DOC use were categorized as quality of information, risky behavior exploration, acute concerns, psychosocial, privacy, and inactivity. CONCLUSIONS: The results of this review strongly suggest DOC use is highly beneficial with relatively few negative consequences. DOC use is an emerging area of research and research gaps exist. Future research should seek to identify benefits and consequences to DOC use in experimental trials.