Extant approaches to close the gap between implementation evidence and practice have been unsuccessful due in part to overreliance on researcher engagement. In practice, change is often driven by mid-level managers. We developed Context-Driven Co-Design (CD2) to equip mid-level managers with a theory- and evidence-based approach to implementation planning. We used a two-pronged design. First, we engaged six established implementation researchers in a modified Delphi process, involving two hour-long meetings and asynchronous feedback to develop and refine a CD2 prototype. Second, we piloted an in-person CD2 training and conducted an hour-long focus group to solicit feedback from mid-level managers on the potential value of CD2 for addressing implementation challenges and opportunities for improving the training. We incorporated focus group feedback and iteratively refined CD2 materials, codified each step of the approach, and further articulated CD2’s key features through two empirical applications. Delphi panelists unanimously agreed that prototype content would be best delivered through interactive training. The resulting one-time, three-hour in-person training was piloted with 17 mid-level managers affiliated with the National Cancer Institute Community Oncology Research Program who were often tasked with implementing cancer care delivery interventions and research protocols. Focus group participants (N = 5) appreciated the training’s practical tools, suggested that the training should focus on a common intervention, and requested more opportunities for peer learning before and after the training. CD2, further refined through subsequent empirical application, involves three steps: (1) agreeing upon an intervention to address a clinical problem and identifying the intervention’s effectiveness-driving features; (2) understanding the context in which the intervention will be implemented, including potential end-users, their workflows, and features of their environment; and (3) co-design session(s) to identify intervention adaptations, context modifications, and exogenous implementation strategies needed to facilitate the intervention’s implementation. We codified CD2, a theory-driven approach to harmonizing interventions, implementation contexts, and implementation strategies. Mid-level managers found CD2 to be an appropriate and acceptable approach to implementation planning. CD2 is consistent with perspectives that advocate humility and deference of researchers to individuals and contexts that biomedical research often positions as subjects. Future work is needed to enhance CD2’s feasibility and scalability.
Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer.Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews.Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case.Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.
OBJECTIVES:1) To describe the experience of caregivers and their perceptions of disparate care in the neonatal intensive care unit (NICU) and 2) explore interprofessional NICU provider perspectives on potential biases and perceptions of disparate care. METHODS:This qualitative study was conducted in 1 southeastern level IV NICU. Semistructured interviews assessed caregiver and provider perspectives on NICU care. Purposive sampling ensured ≥50% of caregivers self-identified as racial and/or ethnic minorities. Interviews were recorded, transcribed verbatim, and audio verified. A coding scheme was developed, raw data were systematically coded, and emerging themes were identified using thematic analyses. RESULTS:Twenty-three caregivers and 14 providers were interviewed, including 5 neonatologists, 6 nurses, and 3 residents. Caregivers were predominantly English-speaking (85%); 96% were mothers with a mean age of 32 years. Neonates were predominantly racial and ethnic minorities (62%). Providers were predominantly White (71%) and female (71%). Five themes emerged 1) ineffective, biased communication between caregivers, providers, and health care team may contribute to disparities; 2) language barriers and lack of interpreter access play a significant role in perceived negative care; 3) lack of caregiver involvement and role in decision-making may negatively influence NICU outcomes, especially for those not able to be present at the bedside; and 4) multiple biases may affect neonatal health disparities. CONCLUSIONS:Our study highlights the importance of considering both provider and racial and/or ethnic minority caregiver perceptions disparities in NICU care delivery. It adds to the literature as one of the few qualitative studies comparing perceptions of disparate NICU care among both caregivers and providers.
Objectives: Participation in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) has numerous benefits, yet many eligible children remain unenrolled. This qualitative study sought to explore perceptions of a novel electronic health record (EHR) intervention to facilitate referrals to WIC and improve communication/coordination between WIC staff and healthcare professionals. Methods: WIC staff in three counties were provided EHR access and recruited to participate. An automated, EHR-embedded WIC participation screening and referral tool was implemented within 8 healthcare clinics; healthcare professionals within these clinics were eligible to participate. The interview guide was developed using the Consolidated Framework for Implementation Research to elicit perceptions of this novel EHR-based intervention. Semi-structured interviews were conducted via telephone. Interviews were recorded, transcribed, coded, and analyzed using thematic analysis. Results: Twenty semi-structured interviews were conducted with eight WIC staff, seven pediatricians, four medical assistants, and one registered nurse. Most participants self-identified as female (95%) and White (55%). We identified four primary themes: (1) healthcare professionals had a positive view of WIC but communication and coordination between WIC and healthcare professionals was limited prior to WIC having EHR access; (2) healthcare professionals favored WIC screening using the EHR but workflow challenges existed; (3) EHR connections between WIC and the healthcare system can streamline referrals to and enrollment in WIC; and (4) WIC staff and healthcare professionals recommended that WIC have EHR access. Conclusions: A novel EHR-based intervention has potential to facilitate healthcare referrals to WIC and improve communication/coordination between WIC and healthcare systems.
Purpose: A cancer diagnosis in adolescence and young adulthood significantly impacts a person's quality of life, particularly concerning identity, self-esteem, and subsequently, body image. This study aims to develop a psychometrically-sound patient-reported outcome measure of body image for adolescent and young adult (AYA) oncology patients that was guided by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS) Scientific Standards and our past concept elicitation interviews with AYAs. Methods: We conducted a multi-step approach involving item identification, refinement, generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYA patients participated, ensuring representation across educational levels, gender, treatment status, and cancer type. Results: Translatability and reading level reviews facilitated language adjustments. Cognitive interviews revealed that 76% of AYAs found the 50 candidate items assessing body image concerns to be easy to answer. AYAs reported that the body image items captured their lived experiences. Three items were excluded due to comprehension difficulties. Conclusion: This study addresses the critical gap in validated measures for assessing body image in AYA oncology patients. Interview findings provided evidence for the content validity and comprehensibility for 47 items assessing body image. The next steps involve large-scale psychometric testing to evaluate the reliability and validity of the body image items to form an item bank allowing the design of short forms or use of computerized-adaptive testing. Ultimately, this work lays the foundation for developing interventions to mitigate the impact of cancer on AYAs' body image during diagnosis, treatment, and recovery.
83 Background: Spiritual care administered through chaplaincy services (CS), is an integral component of cancer care in the US; however, chaplaincy utilization (CU) among patients who identify with a Dharmic religion (DR; Hinduism, Buddhism, Sikhism, Jainism) is unknown. This study measures CU and explores perceptions of CS among hospitalized DR patients with cancer. Methods: A retrospective chart review identified patients hospitalized in a specialty cancer center in New York City between 2015 and 2019. The primary objective was to measure proportions of DR and non-DR (NDR) patients with CU (≥1 CS visit); secondary objectives included identifying factors associated with CU. Demographics, length of stay (LOS), total number of CS visits, and disposition were collected. Bivariate and multivariate logistic regression analyses examined associations between religion, age, race, language, LOS and advanced illness (AI; ICU admission, inpatient death, hospice discharge) with CU. Semi-structured interviews were conducted to explore CS perceptions and preferences among DR patients with cancer in 2020. Data was coded and analyzed independently and iteratively by two investigators and themes were identified. Results: Of 54,828 patients, 59% identified as Christian, 14% identified as Jewish, and 2% identified with a DR (n=1163; 58% Hindu, 33% Buddhist, 4.8% Sikh, 3.4% multiple faiths, 0.2% Jain). Compared to NDR patients, DR patients were younger (median age 59 vs. 63, p<0.001), more likely East or South Asian (79% vs. 5.6%, p<0.001), had more AI (23% vs 15%, p<0.001), but lower CU (37% vs 32%, P<0.001). In multivariable analysis, LOS, NDR, and AI were associated with CU (Table); with Non-Hispanic, White as the reference group, race was not associated with CU. Twenty-two patients (91% Hindu, 9% Sikh) were interviewed. Few reported being approached about CS during their admission, and most expressed unfamiliarity with CS. Some felt CS and spiritual care was tailored to Jewish and Christian faiths but not DR. Suggestions for the hospital included having DR-specific chaplains, religious materials, and worship space. Conclusions: Despite more AI, CU was lower among DR patients. DR patients identified unfamiliarity and/or NDR perceptions as barriers to CS and recommended greater access to faith-specific resources. More work is needed to deliver faith-concordant spiritual care for DR patients.[Table: see text]
Introduction: The ongoing COVID-19 pandemic has been associated with increased negative mood in youth, and a few reports of changes in tobacco use. We sought to increase the depth of knowledge on the effects of the pandemic on early young adult mood states, access to tobacco products and tobacco use behaviors, and knowledge of risks associated with tobacco use and COVID-19 by learning more about the lived experience of the pandemic among young adults early in their smoking trajectories.Methods: Semi-structured qualitative interviews were conducted with 25 young adults ages 18-20 (M symbolscript 19) who smoked cigarettes daily or nearly every day and had used electronic cigarettes (ECs) on symbolscript 2 occasions in their lifetime.Results: Our results uncovered several themes: 1) The majority of teens experienced mental health disturbances as a result of the pandemic, which manifested as depression, anxiety, and/or acute loneliness due to social isolation; 2) tobacco purchasing behaviors sometimes changed, with both greater and less access reported among partic-ipants; 3) changes in tobacco use were also reported, with some reporting increases in use, others reporting decreases, and a few reporting quitting; and 4) while some youth reported that tobacco use could increase their risk related to COVID-19, the majority reported confusion and uncertainty about how tobacco use impacted their risk.Conclusions: The themes identified specific factors that may account for the heterogeneity of impacts of the pandemic on tobacco use, and highlight the value of qualitative work for centering the lived experience of youth for understanding larger trends in substance use.
230 Background: Spiritual support of cancer patients has been associated with improved EOL outcomes; however, little is known about EOL experiences among cancer patients who identify with a Dharmic religion (DR; Hinduism, Buddhism, Sikhism, Jainism). This study used mixed methods to evaluate utilization and EOL care preferences among DR cancer patients. Methods: We conducted a secondary analysis of data from a separate retrospective study of utilization of chaplaincy services by patients hospitalized at a specialty cancer center in New York City between 2015 and 2019. This database included information about patients' religious identification and about accepted measures of EOL care utilization: hospice enrollment in the last 3 days; chemotherapy use in the last 14 days; urgent care center (UCC) visits or ICU admissions within the last 30 days; and inpatient deaths. Bivariate analyses examined associations between religious identification and EOL care metrics. In 2020, we prospectively conducted semi-structured qualitative interviews to explore EOL care preferences among DR patients with cancer at this hospital. Data were coded and analyzed independently and iteratively by two investigators, and themes were identified. Results: Among 28711 patients (99% NDR), DR patients had significantly higher rates of EOL care utilization on every measure (Table). Only 41% of DR patients had ≥ 1 chaplaincy visit. Twenty-two patients (91% Hindu, 9% Sikh) and 11 NDR chaplains were interviewed. Few patients felt religion influenced their preferences for CPR and intubation. Some patients felt uncomfortable discussing EOL practices with their care team, and several chaplains acknowledged lacking knowledge in EOL practices. To improve EOL care for DR patients, chaplains suggested improving chaplaincy training and developing relationships with community-based leaders and volunteers. Conclusions: While DR patients had higher EOL care utilization, most did not report religion influenced their EOL care preferences. Chaplains’ unfamiliarity with DR-specific EOL practices was identified as a barrier. Future work to optimize EOL care for DR patients should improve chaplaincy training and access to faith-concordant spiritual care providers.[Table: see text]
The Biden Administration is considering a low nicotine product standard for cigarettes. This qualitative study examined reactions to a nicotine reduction policy among adolescents and young adults (AYA) who smoke cigarettes. After completing a lab study involving masked exposure either to low nicotine or normal nicotine research cigarettes and unmasked exposure to e-cigarettes varying in nicotine concentration and flavor, we conducted follow-up semi-structured interviews (N = 25) to explore participants' knowledge, attitudes, and perceptions of a low nicotine product standard and their anticipated tobacco use behavior after policy implementation. Interviews were audio-recorded, transcribed verbatim, double-coded, and analyzed using reflexive thematic analysis. Nearly half of participants supported the policy because they thought it would prevent young people from starting smoking and/or would help people quit. Reasons some participants opposed the policy included beliefs that adults should have the choice to smoke or that a nicotine reduction policy is counterintuitive because the government benefits from cigarette sales. Others believed the policy would be ineffective because youth could circumvent the policy (e.g., illicit market) or would increase their smoking to maintain the same nicotine level. Almost half of participants said they would quit smoking while the other half said they would continue smoking, although potentially reduce their smoking. Overall, our qualitative findings point to the need for pre-policy media campaigns targeting AYA who smoke to minimize negative reactions, dispel fears, and correct misperceptions as well as encourage quitting and provide information on accessing cessation resources.
The US Food and Drug Administration is considering banning menthol cigarettes, which could result in some people who smoke menthol cigarettes switching to other tobacco products (OTPs). This qualitative study explored reactions to using OTPs instead of menthol cigarettes. People who smoke menthol cigarettes (N=40) completed a behavioral economic assessment of the effects of menthol cigarette price increases on OTP purchasing. At the highest price, most participants could not afford menthol cigarettes. Instead, they could purchase non-menthol cigarettes, little cigars/cigarillos (LCCs), e-cigarettes, smokeless tobacco, or medicinal nicotine, or they could abstain from tobacco use. Participants used the OTPs they purchased for three days. During follow-up sessions, participants (n=35) completed semi-structured interviews discussing their purchasing-decisions and experiences using OTPs instead of menthol cigarettes. Interviews were analyzed using reflexive thematic analysis methods. Factors influencing purchasing decisions included flavor, price, prior use of OTPs, interest in trying new OTPs, and perceived ability to satisfy nicotine cravings. Participants described positive experiences using e-cigarettes including the "refreshing" menthol flavor, ability to use in places where cigarettes are prohibited, and convenience of use relative to smoking. Among those using non-menthol cigarettes, many reported they were acceptable but less satisfying products compared to menthol cigarettes while others reported negative reactions to them such as tasting like "cardboard". Reactions to smoking LCCs were mostly unfavorable but participants said it gave them "something to light". Multiple considerations may affect switching to OTPs in light of pending menthol cigarette regulation including the availability of menthol-flavored alternatives and (dis)satisfaction with OTPs.
Background: Patient portals can be an innovative and efficient way to engage patients in advance care planning (ACP). However, comprehension and judgment in older adults with cognitive impairment presents several barriers and challenges to engaging in new technology. Our objective was to develop an ACP portal-based tool (ACPVoice) for community-dwelling persons living with cognitive impairment (PLCI) by engaging end-users in the design process. Methods: Two rounds of cognitive interviews were conducted to identify and resolve cognitive issues related to comprehension, judgment, response, and to assess content validity. Purposive sampling was used with the goal of enrolling 15 different participants (five with mild cognitive impairment and five dyads (those with mild dementia and their care partner) in each round to assess respondents’ understanding of questions related to advance care planning to be administered via the patient portal. Results: Twenty PLCI (mean age 78.4, 10 females [50%]) and ten care partners (mean age 60.9, 9 females [90%]) completed cognitive interviews between May 2021 and October 2021. The mean Mini-Mental State Examination score for PLCI was 25.6 (SD 2.6). Unclear wording and undefined vague and/or unfamiliar terms were the major issues identified. Revisions to item wording, response options, and instructions were made to improve question comprehension and response as well as navigational ease. Conclusion: Minor changes to the wording, format, and response options substantially improved respondents’ ability to interpret the item content of the ACPVoice tool. Dissemination and implementation of the ACPVoice tool could help to engage community-dwelling PLCI in ACP discussions.
Objective: The US Food and Drug Administration recently announced its intention to pursue a federal ban on menthol cigarettes. This qualitative study assessed reactions to a potential menthol cigarette ban among people who smoke menthol cigarettes. Methods: As part of a laboratory study examining menthol flavor regulations, we conducted follow-up interviews with participants who smoke menthol cigarettes (N = 35). We explored the following topics: (1) menthol cigarette risk perceptions; (2) knowledge, attitudes, and perceptions of menthol cigarette regulations; and (3) anticipated behavior if menthol cigarettes were banned. Interviews were audio-recorded, transcribed verbatim, double-coded, and analyzed using reflexive thematic analysis. Results: Many participants thought menthol cigarettes carried more health risks than non-menthol cigarettes. Some participants said regulators wanted to ban menthol cigarettes because they appeal to youth. Others thought a ban would be good for public health because fewer people, particularly youth, would smoke. Several voiced skepticism about banning only menthol cigarettes rather than all cigarettes. Most said they would use other products, including electronic cigarettes or non-menthol cigarettes, but many also thought a menthol ban could motivate them or others to quit smoking. Conclusions: Banning menthol cigarettes could lead some people who smoke menthol cigarettes to switch to potentially less harmful products, like e-cigarettes, or quit smoking, which would likely benefit public health; however, others may simply transition to non-menthol cigarettes. As regulators move forward with banning menthol cigarettes, communication campaigns explaining the public health benefits, potentially focusing on the benefits for youth, should be part of the policy implementation plan.