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Patients' perceptions of a culturally targeted Hispanic Kidney Transplant Program: A mixed methods study.

ABSTRACT: Disproportionately fewer waitlisted Hispanics receive living donor kidney transplants (LDKTs) compared to non-Hispanic whites. Northwestern Medicine's® culturally targeted Hispanic Kidney Transplant Program (HKTP) is associated with a significant increase in LDKTs among Hispanics. This multisite study assessed potential kidney recipients' and donors' and/or family members' perceptions of the HKTP's cultural components through semi-structured interviews and validated surveys. Qualitative thematic analysis and descriptive statistics were performed. Thirty-six individuals participated (62% participation rate) comprising 21 potential recipients and 15 potential donors/family (mean age: 51 years, 50% female, 72% preferred Spanish). Participants felt confident about the educational information because a transplant physician delivered the education and viewed the group format as effective. Participants felt that education sessions addressed myths about transplantation shared by Hispanics. Primary use of Spanish enhanced participants' understanding of transplantation. While few knew about living donation before attending the HKTP, most were "more in favor of" kidney transplantation (97%) and living donation (97%) afterward. Few reported learning about the HKTP from outreach staff and suggested leveraging community leaders to promote HKTP awareness. Our findings suggest the HKTP's cultural components were viewed favorably and positively influenced perceptions of kidney transplantation and living donation, which may help reduce transplant disparities in Hispanics. (Clinicaltrial.gov registration # NCT03276390, date of registration: 9-7-17, retrospectively registered).

SUBMITTER: Alhalel N

PROVIDER: S-EPMC6597335 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Patients' perceptions of a culturally targeted Hispanic Kidney Transplant Program: A mixed methods study.

Alhalel Nathan N Francone Nicolas O NO Salazar Alice M AM Primeaux Sharon S Ruiz Richard R Caicedo Juan Carlos JC Gordon Elisa J EJ

Clinical transplantation 20190523 6

Disproportionately fewer waitlisted Hispanics receive living donor kidney transplants (LDKTs) compared to non-Hispanic whites. Northwestern Medicine's<sup>®</sup> culturally targeted Hispanic Kidney Transplant Program (HKTP) is associated with a significant increase in LDKTs among Hispanics. This multisite study assessed potential kidney recipients' and donors' and/or family members' perceptions of the HKTP's cultural components through semi-structured interviews and validated surveys. Qualitati ...[more]

PMID: 31034642

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Project description:BACKGROUND:The shortage of organs for kidney transplantation for patients with end-stage renal disease (ESRD) is magnified in Hispanics/Latin Americans in the United States. Living donor kidney transplantation (LDKT) is the treatment of choice for ESRD. However, compared to their representation on the transplant waitlist, fewer Hispanics receive a LDKT than non-Hispanic whites. Barriers to LDKT for Hispanics include: lack of knowledge, cultural concerns, and language barriers. Few interventions have been designed to reduce LDKT disparities. This study aims to reduce Hispanic disparities in LDKT through a culturally targeted intervention. METHODS/DESIGN:Using a prospective effectiveness-implementation hybrid design involving pre-post intervention evaluation with matched controls, we will implement a complex culturally targeted intervention at two transplant centers in Dallas, TX and Phoenix, AZ. The goal of the study is to evaluate the effect of Northwestern Medicine's® Hispanic Kidney Transplant Program's (HKTP) key culturally targeted components (outreach, communication, education) on Hispanic LDKT rates over five years. The main hypothesis is that exposure to the HKTP will reduce disparities by increasing the ratio of Hispanic to non-Hispanic white LDKTs and the number of Hispanic LDKTs. We will also examine other process and outcome measures including: dialysis patient outreach, education session attendance, marketing efforts, Hispanic patients added to the waitlist, Hispanic potential donors per potential recipient, and satisfaction with culturally competent care. We will use mixed methods based on the Promoting Action on Research Implementation in Health Services (revised PARIHS) and the Consolidated Framework for Implementation Research (CFIR) frameworks to formatively evaluate the fidelity and innovative adaptations to HKTP's components at both study sites, to identify moderating factors that most affect implementation fidelity, and to identify adaptations that positively and negatively affect outcomes for patients. DISCUSSION:Our study will provide new knowledge about implementing culturally targeted interventions and their impact on reducing health disparities. Moreover, the study of a complex organizational-level intervention's implementation over five years is rare in implementation science; as such, this study is poised to contribute new knowledge to the factors influencing how organizational-level interventions are sustained over time. TRIAL REGISTRATION:(ClinicalTrials.gov registration # NCT03276390 , date of registration: 9-7-17, retrospectively registered).

Project description:BackgroundAlthough DBT is the standard initial imaging modality for women with focal breast symptoms, the importance of ultrasound has grown rapidly in the past decades. Therefore, the Breast UltraSound Trial (BUST) focused on assessing the diagnostic value of ultrasound and digital breast tomosynthesis (DBT) for the evaluation of breast symptoms by reversing the order of breast imaging; first performing ultrasound followed by DBT. This side-study of the BUST evaluates patients' perceptions of ultrasound and DBT in a reversed setting.MethodsAfter imaging, 1181/1276 BUST participants completed a survey consisting of open and closed questions regarding both exams (mean age 47.2, ±11.74). Additionally, a different subset of BUST participants (n = 29) participated in six focus group interviews 18-24 months after imaging to analyze their imaging experiences in depth.ResultsA total of 55.3% of women reported reluctance to undergoing DBT, primarily due of pain, while the vast majority also find bilateral DBT reassuring (87.3%). Thematic analysis identified themes related to 1) imaging reluctance (pain/burden, result, and breast harm) and 2) ultrasound and DBT perceptions. Regarding the latter, the theme comfort underscores DBT as burdensome and painful, while ultrasound is largely perceived as non-burdensome. Ultrasound is also particularly valued for its interactive nature, as highlighted in the theme interaction. Perceived effectiveness reflects women's interest in bilateral breast evaluation with DBT and the visibility of lesions, while they express more uncertainty about the reliability of ultrasound. Emotional impact portrays DBT as reassuring for many women, whereas opinions on the reassurance provided by ultrasound are more diverse. Additional themes include costs, protocols and privacy.ConclusionsUltrasound is highly tolerated, and particularly valued is the interaction with the radiologist. Nearly half of women express reluctance towards DBT; nevertheless, a large portion report feeling more confident after undergoing bilateral DBT, reassuring them of the absence of abnormalities. Understanding patients' perceptions of breast imaging examinations is of great value when optimizing diagnostic pathways.

Project description:IntroductionHealthy Beginnings is an established nurse-led early childhood obesity prevention program that promotes healthy infant feeding practices and active play in the early years of life. To improve engagement with culturally and linguistically diverse populations, the Healthy Beginnings program delivered by telephone was culturally adapted and implemented with Arabic- and Chinese-speaking mothers in Sydney, Australia. The cultural adaptation process has been published separately. In this article, we aimed to evaluate the feasibility of the culturally adapted program.MethodsIn 2018-2019, the culturally adapted Healthy Beginnings program was implemented with Arabic- and Chinese-speaking women recruited from antenatal clinics in Sydney. At four staged timepoints (from third trimester until 6 months of age), mothers were sent culturally adapted health promotion booklets and text messages and offered four support calls from bi-cultural child and family health nurses in Arabic and Chinese. A mixed methods evaluation included a) baseline and 6-month telephone surveys, followed by b) semi-structured follow-up interviews with a subset of participating mothers and program delivery staff. Main outcomes of this feasibility study were reach (recruitment and retention), intervention dose delivered (number of nurse support calls completed) and acceptability (appropriateness based on cognitive and emotional responses).ResultsAt recruitment, 176 mothers were eligible and consented to participate. Of 163 mothers who completed the baseline survey, 95% completed the program (n = 8 withdrew) and 83% completed the 6-month survey (n = 70 Arabic- and n = 65 Chinese-speaking mothers). Most mothers (n = 127, 78%) completed at least one nurse support call. The qualitative analysis of follow-up interviews with 42 mothers (22 Arabic- and 20 Chinese-speaking mothers) and 10 program delivery staff highlighted the perceived value of the program and the positive role of bi-cultural nurses and in-language resources. Mothers who completed more nurse support calls generally expressed greater acceptability.ConclusionsThe culturally adapted Healthy Beginnings program was feasible to deliver and acceptable to Arabic- and Chinese-speaking mothers. Our results highlight the importance of in-language resources and individualised bi-cultural nurse support by telephone for supporting culturally and linguistically diverse migrant families with infant feeding and active play. These findings support the potential for program refinements and progression to an effectiveness trial.

Project description:BackgroundLiver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increasing number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplantation. The LT clinic at the Centre hospitalier de l'Université de Montréal (CHUM) is developing a new health care model across the entire continuum of pre-, peri-, and posttransplant care that features patient monitoring by an interdisciplinary team, including an accompanying patient; a digital platform to host a clinical plan; a learning program; and data collection from connected objects.ObjectiveThis study aims to (1) evaluate the outcomes following the implementation of a patient platform with connected devices and an accompanying patient, (2) identify implementation barriers and facilitators, (3) describe service outcomes in terms of health outcomes and the rates and nature of contact with the accompanying patient, (4) describe patient outcomes, and (5) assess the intervention's cost-effectiveness.MethodsSix types of participants will be included in the study: (1) patients who received transplants and reached 1 year after transplantation before September 2023 (historical cohort or control group), (2) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group), (3) relatives of those patients, (4) accompanying patients who have received an LT and are interested in supporting patients who will receive an LT, (5) health care professionals, and (6) decision makers. To describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, accompanying patient logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study.ResultsIn total, 5 (steering, education, clinical-technological, nurse prescription, and accompanying patient) working committees have been established for the study. Recruitment of patients is expected to start in November 2023. All questionnaires and technological platforms have been prepared, and the clinicians, stakeholders, and accompanying patient personnel have been recruited.ConclusionsThe implementation of this model in the trajectory of LT recipients at the CHUM may allow for better monitoring and health of patients undergoing transplantation, ultimately reducing the average length of hospital stay and promoting better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at the CHUM and across Quebec (potentially affecting 888 patients per year) but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision makers and will serve as a model for other initiatives involving accompanying patients, connected objects, or digital platforms.International registered report identifier (irrid)PRR1-10.2196/54440.

Project description:BackgroundBlack young adults suffer from psychological distress at either similar or greater rates than that of White Americans, yet they are seven times less likely to have access to or receive effective treatments. Fortunately, mobile-health (mHealth) technology may transform mental health services and address disparities in mental healthcare. The current study utilized focus groups of Black young adults to inform the development of culturally-adapted mHealth using quantitative and qualitative approaches.MethodsThe study utilized a mixed-methods approach, in that qualitative (i.e., mini focus groups, n=11) and quantitative methods (i.e., self-report surveys) were used to explore the research questions. Participants included African American young adults (n=38, Mage =21). Participants completed self-report questionnaires prior to focus group facilitation. Correlational analyses were used to answer the quantitative research questions, and thematic analysis was used to answer the qualitative research questions.ResultsThe qualitative findings highlighted that sociocultural experiences impact mental health and treatment seeking attitudes. Despite these findings, participants highlighted a variety of desired features and content that should be incorporated into future culturally-adapted mHealth interventions. Participants also highlighted both positive and negative aspects of current mHealth technologies for mental health. Finally, the study found that on average, participants had positive attitudes towards mental health, mental health treatments, and utilizing mHealth for mental health. Participants also had strong desires for culturally-adapted mHealth interventions. Bivariate correlations also revealed significant associations between vicarious online racial discrimination and mHealth attitudes, as well as racial identity and mHealth attitudes.ConclusionsIn summary, the current study highlights that there is an urgent need for mHealth technology for mental health symptoms for African American young adults and presents a variety of features, content, and design/development considerations for future researchers.

Dataset Information

Patients' perceptions of a culturally targeted Hispanic Kidney Transplant Program: A mixed methods study.

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Patients' perceptions of a culturally targeted Hispanic Kidney Transplant Program: A mixed methods study.

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