Sleep experiences of parents of children 18 years or younger with sickle cell disease during the COVID-19 pandemic: a qualitative study.

STUDY OBJECTIVES: The coronavirus disease pandemic has highlighted disparities in health care. Parents assist in sickle cell disease management in children. Understanding sleep in parents of children who are diagnosed with sickle cell disease is an important facet of disease management. Our objectives were to identify sleep characteristics of parents of children with sickle cell disease age 18 years or younger during the coronavirus disease pandemic, to investigate measures used by parents to achieve restful sleep, and to discuss how sleep may be improved in parents of children diagnosed with sickle cell disease. METHODS: This study conducted 14 face-to-face semistructured interviews with parents of children diagnosed with sickle cell disease. A majority of the interviews (93%) were conducted at a hematology clinic. Qualitative thematic analysis was used to analyze data. RESULTS: All parents reported that their child experienced pain because of sickle cell disease. Most parents (86.7%) reported that their child was diagnosed with sickle cell anemia. Four themes were identified: difficulty obtaining restful sleep during their child's sickle cell crisis, sleep during the coronavirus disease pandemic, factors affecting sleep, and effects of sleep disturbance and deprivation on parental performance. CONCLUSIONS: This research has highlighted some of the difficulties experienced by parents of children who are diagnosed with sickle cell disease and allows for additional insight into the sleep experiences of parents as they attempt to manage their child's disease. CITATION: Osborne JC, Odlum M, Sedrak A. Sleep experiences of parents of children 18 years or younger with sickle cell disease during the COVID-19 pandemic: a qualitative study. J Clin Sleep Med. 2024;20(5):777-782.

Barriers and Facilitators to Success in Undergraduate Nursing Education Among Minority Students: A Systematic Review.

BACKGROUND: Underrepresented minority (URM) students in nursing education are essential to address health disparities. PURPOSE: To determine barriers and facilitators to success among URM students in nursing education. METHODS: CINAHL, PubMed, Embase, and PsycINFO were searched for English language research studies published between 1980 and 2020, which focused on barriers and facilitators to success in nursing education in the United States among URM students. Using PRISMA guidelines, 2 reviewers independently reviewed and appraised the quality of relevant articles. RESULTS: Among the 4435 articles surveyed, 14 met inclusion criteria. Most studies were focused on Black and Hispanic/Latinx students, and 71% were qualitative. Barriers included social isolation, caregiving demands, lack of mentorship, and inadequate financial resources. Facilitators included mentorship, positive class and curriculum, family support, financial support, and diverse/inclusive learning environments. CONCLUSIONS: URM students face complex barriers to success in nursing education. Addressing these barriers requires a multilevel approach.

Home health aide perceived information needs for dementia-specific care plans.

Home health aides (HHAs) are a vital workforce essential to meet the complex care needs of the persons living with dementia (PLWD) who remain at home. Care plans for PLWD in the home healthcare setting should incorporate HHAs perspectives. We sought to understand HHAs' perspectives about their information needs in caring for PLWD, from June to August 2020, semi-structured interviews telephone interviews (n = 25) with English and Spanish-speaking HHAs with limited English proficiency in the New York metropolitan area. Interviews were audio-recorded, transcribed verbatim and transcripts were analyzed using conventional content analysis. Four key themes emerged reflective of information needs of HHAs caring for PLWD: (1) ambiguities of scope of HHA tasks related to medication management; (2) clinical information needs of HHAs; (3) dementia-related concerns; and (4) going above and beyond. Findings from this research can guide efforts to develop dementia-specific care plans, and training to support the HHA workforce caring for the growing population of PLWD.

Facilitators of COVID-19 vaccine acceptance among Black and Hispanic individuals in New York: A qualitative study.

BACKGROUND: Black and Hispanic individuals experience poorer outcomes related to coronavirus disease (COVID-19), yet have alarmingly lower uptake of the COVID-19 vaccine compared to non-Hispanic White individuals. OBJECTIVE: To explore the perceptions of barriers and facilitators of COVID-19 vaccine acceptance among Black and Hispanic adults in the New York. METHODS: A qualitative study consisting of one-on-one semistructured interviews with Black and/ or Hispanic adults in New York state was conducted. Participants were recruited from local businesses, community-based social service agencies and Black and Hispanic churches and a college. All data were collected between February and March 2021. Transcripts were analyzed using qualitative thematic analysis. RESULTS: A total of 50 individuals (32 [64%] women; mean [SD] age, 42.04 [15.99] years) participated. The majority of participants identified as Black (n = 34, 68%), 9 (18%) identified as Hispanic, 3 (6%) as Black and Hispanic, and 4 (8%) as White and Hispanic. Twenty-two participants (44%) had high-school level education or less. Mistrust emerged as a central barrier to COVID-19 vaccine acceptance. Facilitators of effective COVID-19 vaccine messages include (1) key informants: like me, (2) personalized community outreach, (3) present the facts, and (4) communicate across multiple media platforms. CONCLUSIONS: This qualitative study found that among Black and Hispanic participants, receipt of reliable vaccine related information, social networks, seeing people like themselves receive the vaccination, and trusted doctors are key drivers of vaccine acceptance.

All alone: A qualitative study of home health aides' experiences during the COVID-19 pandemic in New York.

BACKGROUND: Despite their integral role, Home Health Aides (HHAs) are largely unrecognized as essential to implementing effective infection prevention and control practices in the home healthcare setting. We sought to understand the infection prevention and control needs and challenges associated with caring for patients during the pandemic from the perspective of HHAs. METHODS: From June to August 2020, data were collected from HHAs in the New York metropolitan area using semi-structured qualitative interviews by telephone; 12 HHAs were interviewed in Spanish. Audio-recorded interviews were transcribed, translated and analyzed using conventional content analysis. RESULTS: In total, 25 HHAs employed by 4 unique home care agencies participated. HHAs had a mean age of 49.8 (± 9.1), 24 (97%) female, 11 (44%) Black, 12 (48%) Hispanic. Three major themes related to the experience of HHA's working during the COVID-19 pandemic emerged: (1) all alone, (2) limited access to information and resources, and (3) dilemmas related to enhanced COVID-19 precautions. Hispanic HHAs with limited English proficiency faced additional difficulties related to communication. CONCLUSIONS: We found that HHA communication with nursing staff, plays a key role in infection control efforts in home care. Efforts to manage COVID-19 in home care should include improving communication between HHAs and nursing staff.

Opioid Use in Adults With Sickle Cell Disease Hospitalized During Vaso-Occlusive Crisis: A Systematic Review.

BACKGROUND: While pain is the hallmark of sickle cell disease (SCD), healthcare personnel are often ill-equipped to adequately treat patients who present in vaso-occlusive crisis (VOC). Although symptom severity varies from individual to individual, SCD is characterized by intervallic pain as a result of oxygen deprivation in tissues and organs. Regardless of pain severity, SCD patients are often viewed as drug seekers by healthcare personnel who have concerns regarding patients' dependence on opioids which may lead to addiction. The objective was to assess the types and amount of opioids used to treat VOC in comparison to Centers for Disease Control opioid prescription guidelines. METHODS: Literature search was conducted using CINAHL, PubMed, the Cochrane Library, Web of Science and hand search. Data were analyzed from 1999 to 2018. Randomized trials, observational, and case studies involved hospitalized adults with SCD who were prescribed opioids to treat VOC. Quality assessment was conducted using Downs and Black checklist. Meta-analysis was not conducted. RESULTS: Five studies were conducted in the USA, Arabia and the Netherlands, and the USA and Canada were included. Participants were treated with either morphine or morphine milligram equivalent (MME). No study used the same method of opioid administration. CONCLUSIONS: Patients with SCD who are hospitalized secondary to VOC mostly received opioids for pain well within the Centers for Disease Control and Prevention prescription guidelines. No uniform method exists. Additional research is warranted.

Impact of state scope-of-practice laws on nurse practitioner-provided home visits.

Millions of older Americans receive nurse practitioner (NP)-provided home based primary care (HBPC). Little is known about how state scope-of- practice (SOP) laws may impact use of NP-home visits. Using 2017 Centers for Medicare and Medicaid Services Provider Utilization and Payment Data Public Use File (PUF), we examined the impact of state SOP laws on the use of NP-home visits. The PUF file was merged with the 2017 American Community Survey to assess area-level median income. Over 4.4 million home visits were provided to 1.6 million Medicare beneficiaries. NPs represented the largest share of providers (47.5%). In states with restricted SOP laws, compared to NPs, physicians and physician assistants had higher odds of providing HBPC. In states with reduced SOP laws, compared to NPs, physicians and PAs had decreased odds of providing HBPC. Our study provides evidence that SOP restrictions are associated with decreased utilization of NP-provided HBPC.

Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

INTRODUCTION: Approximately 10% to 15% of people affected by sickle cell disease (SCD) in the United States are Latino, many of whom are primary Spanish speakers. A key tool for self-reported outcome measures, the Pediatric QOL Inventory (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic validity of a Spanish translation and compare perception of disease-specific and generic quality of life (QOL) in a sample of Latino and non-Latino children with SCD and their parents. METHOD: Following forward and backward translation, Spanish-speaking child-parent dyads linguistically validated the translated instruments. Disease-specific and generic QOL perception of 28 child-parent dyads who participated in a clinical feasibility trial, HABIT (Hydroxyurea Adherence for Personal Best in Sickle Cell Disease), were compared by ethnicity. Data were analyzed by descriptive statistics, Mann-Whitney U test, absolute score differences, and minimal clinically important differences (MCID). RESULTS: The translated questionnaire required no further language changes. QOL scores were higher for Latino children and parents compared with non-Latinos, with score differences exceeding MCIDs for total scores and the majority of subscale scores. CONCLUSION: Spanish language PedsQL SCD instruments allow measurement of QOL in Spanish-speaking Latino children with SCD and their parents. Score differences for Latinos mostly exceeded MCIDs, suggesting that these differences are clinically meaningful. Confirmation of these findings is warranted.

Adolescent and parent use of new technologies for health communication: a study in an urban latino community.

BACKGROUND: Mobile communication technologies provide novel opportunities to support clinic-based health initiatives. Adoption of technologies for daily use and for health communication can differ between communities, depending upon demographic and cultural characteristics. DESIGN AND METHODS: A survey was administered in adolescent primary care and subspecialty clinics to assess parent-adolescent preferences in use of mobile technologies and social media to support provider-patient communication in an urban Latino community. RESULTS: Of 130 respondents (65 parent-adolescent pairs), approximately half frequently sent and received text messages but lacked agreement regarding the other's text messaging use. In contrast, adolescents only rarely used email compared to parents (15.4% versus 37.5%, P=0.006). Of social media, Facebook™/MySpace™ was most frequently used by parents and youth (60% and 55.4%, P=0.59); however, most lacked interest in using social media for health communication. Parents reported more interest than adolescents in receiving email (73.4% versus 35.9%, P<0.001) and text messages (58.5% versus 33.9%, P=0.005) for health, but had more concerns about privacy issues (26.2% versus 9.2%, P=0.01). Respondents who were American born (aOR 5.7, 95%CI 1.2-28.5) or regularly used Instant Messaging or Facebook™/MySpace™ (aOR 4.6, 95%CI 1.4-14.7) were more likely to be interested in using social media for health communication. CONCLUSIONS: These findings underscore the importance of targeted assessment for planning the utilization of communication technologies and social media in clinical care or research for underserved youth. Significance for public healthCommunication technologies provide novel opportunities to support clinic-based health initiatives for underserved youth. However, adoption of technologies among communities may differ depending upon demographic and cultural characteristics. We surveyed a sample of urban Latino parents and youth regarding their current use of mobile and social media technologies and preferences for use of these technologies for health communication. This is the first study to compare the perspective of underserved parents and their youth regarding use of a wide variety of mobile and social communication technologies, concordance between youth-parent pairs in perceived use of texting and preferences for the purpose of health communication. Our findings differ from those from adults surveyed in other under-served communities, highlighting heterogeneity between communities. Variations in use of communication technologies and social media and preferences between parent-youth pairs suggest that understanding these factors within target populations is crucial for successful use to support health and health services.