Using Technology to Support Expectant and Parenting Youth through Case Management: Lessons Learned in the Field.

INTRODUCTION: The Support. Empower. Learn. Parenting Health Initiative (SELPHI) provides expectant and parenting youth ages 16-24 in Philadelphia with supports to improve educational, social, and economic outcomes to shape their health and the health of their children. Phone, text, video-based, and social media communication technology is built in to SELPHI's program design to facilitate case management and connect clients to a broad referral network. Given the novelty of using information and communication technology (ICT) in case management, the reported lessons learned seek to give providers a specific and nuanced picture of ICT in case management. METHODS: In its initial 6-month implementation period, SELPHI's five case managers, called Navigators, served 59 clients. Data from feedback surveys and case records were collected from clients and Navigators. Data included client demographic characteristics, needs assessment, and contact records to inform continuous quality improvement (CQI). RESULTS: ICT's benefits included having multiple ways to connect to difficult-to-reach clients, the ability to be more responsive to clients, and the flexibility to address scheduling and transportation barriers. ICT's challenges are related to Navigators' boundary setting, limitations on rapport building, and data security considerations. CQI data are presented to illustrate the lessons learned. Text messages were the most prevalent ICT; phone calls were most successful in engaging clients. Clients' ICT preferences differed by purpose of communication. DISCUSSION: Findings suggest that programs should understand the nuances of client contact preferences. To maximize the benefits of ICT, programs must develop or adapt protocols based on preference and purpose of communication.

Perceived Benefits and Barriers to Free Summer Meal Participation Among Parents in New York City.

OBJECTIVE: To examine perceived benefits and barriers of summer meal participation among lower-income families who participate in school lunch programs during the year. DESIGN: Semistructured phone interviews were conducted with parents of elementary-aged children, including both participants and nonparticipants in summer meals. SETTING: Queens, Bronx, and Brooklyn, NY. PARTICIPANTS: Participants were lower-income, racially/ethnically diverse parents of elementary-aged children. Of 20 participants, 17 were minorities (85%), 16 were women (80%), and 11 had an annual household income < $30,000 (55%). PHENOMENON OF INTEREST: Interviews explored parents' experiences with summer meals programs, the impact on food provisioning in the summer, and benefits and barriers. ANALYSIS: Interviews were transcribed, coded, and analyzed thematically. RESULTS: Five themes emerged, including 3 benefits of summer meals: reducing stress for parents, fostering social support and connection, and the opportunity to develop healthier eating habits; and 2 barriers to participation: lack of cultural inclusivity and lack of widespread knowledge about summer meals. CONCLUSIONS AND IMPLICATIONS: The main purpose of summer meals is to reduce food insecurity, but the programs also provide social and psychological benefits valued by lower-income families in New York, although participation barriers persist.

Characterizing Approaches to Dialysis Decision Making with Older Adults: A Qualitative Study of Nephrologists.

BACKGROUND AND OBJECTIVES: Despite guidelines recommending shared decision making, nephrologists vary significantly in their approaches to discussing conservative management for kidney replacement therapy with older patients. Many older patients do not perceive dialysis initiation as a choice or receive sufficient information about conservative management for reasons incompletely understood. We examined how nephrologists' perceptions of key outcomes and successful versus failed treatment discussions shape their approach and characterized different models of decision making, patient engagement, and conservative management discussion. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Our qualitative study used semistructured interviews with a sample of purposively sampled nephrologists. Interviews were conducted from June 2016 to May 2017 and continued until thematic saturation. Data were analyzed using typological and thematic analyses. RESULTS: Among 35 nephrologists from 18 practices, 20% were women, 66% had at least 10 years of nephrology experience, and 80% were from academic medical centers. Four distinct approaches to decision making emerged: paternalist, informative (patient led), interpretive (navigator), and institutionalist. Five themes characterized differences between these approaches, including patient autonomy, engagement and deliberation (disclosing all options, presenting options neutrally, eliciting patient values, and offering explicit treatment recommendation), influence of institutional norms, importance of clinical outcomes (e.g., survival and dialysis initiation), and physician role (educating patients, making decisions, pursuing active therapies, and managing symptoms). Paternalists and institutionalists viewed initiation of dialysis as a measure of success, whereas interpretive and informative nephrologists focused on patient engagement, quality of life, and aligning patient values with treatment. In this sample, only one third of providers presented conservative management to patients, all of whom followed either informative or interpretive approaches. The interpretive model best achieved shared decision making. CONCLUSIONS: Differences in nephrologists' perceptions of their role, patient autonomy, and successful versus unsuccessful encounters contribute to variation in decision making for patients with kidney disease.

Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists.

BACKGROUND: Although dialysis may not provide a large survival benefit for older patients with kidney failure, few are informed about conservative management. Barriers and facilitators to discussions about conservative management and nephrologists' decisions to present the option of conservative management may vary within the nephrology provider community. STUDY DESIGN: Interview study of nephrologists. SETTING & PARTICIPANTS: National sample of US nephrologists sampled based on sex, years in practice, practice type, and region. METHODOLOGY: Qualitative semistructured interviews continued until thematic saturation. ANALYTICAL APPROACH: Thematic and narrative analysis of recorded and transcribed interviews. RESULTS: Among 35 semistructured interviews with nephrologists from 18 practices, 37% described routinely discussing conservative management ("early adopters"). 5 themes and related subthemes reflected issues that influence nephrologists' decisions to discuss conservative management and their approaches to these discussions: struggling to define nephrologists' roles (determining treatment, instilling hope, and improving patient symptoms), circumventing end-of-life conversations (contending with prognostic uncertainty, fearing emotional backlash, jeopardizing relationships, and tailoring information), confronting institutional barriers (time constraints, care coordination, incentives for dialysis, and discomfort with varied conservative management approaches), conservative management as "no care," and moral distress. Nephrologists' approaches to conservative management discussions were shaped by perceptions of their roles and by a common view of conservative management as no care. Their willingness to pursue conservative management was influenced by provider- and institutional-level barriers and experiences with older patients who regretted or had been harmed by dialysis (moral distress). Early adopters routinely discussed conservative management as a way of relieving moral distress, whereas others who were more selective in discussing conservative management experienced greater distress. LIMITATIONS: Participants' views are likely most transferable to large academic medical centers, due to oversampling of academic clinicians. CONCLUSIONS: Our findings clarify how moral distress serves as a catalyst for conservative management discussion and highlight points of intervention and mechanisms potentially underlying low conservative management use in the United States.