Understanding Family-Level Effects of Adult Chronic Disease Management Programs: Perceived Influences of Behavior Change on Adolescent Family Members' Health Behaviors Among Low-Income African Americans With Uncontrolled Hypertensions

Background: Despite improvements in cardiovascular disease (CVD) prevention and treatment, low-income African Americans experience disparities in CVD-related morbidity and mortality. Childhood obesity disparities and poor diet and physical activity behaviors contribute to CVD disparities throughout the life course. Given the potential for intergenerational transmission of CVD risk, it is important to determine whether adult disease management interventions could be modified to achieve family-level benefits and improve primary prevention among high-risk youth.Objective: To explore mechanisms by which African-American adults' (referred to as index patients) participation in a hypertension disease management trial influences adolescent family members' (referred to as adolescents) lifestyle behaviors.Design/Methods: The study recruited index patients from the Achieving blood pressure Control Together (ACT) study who reported living with an adolescent ages 12–17 years old. Index patients and adolescents were recruited for in-depth interviews and were asked about any family-level changes to diet and physical activity behaviors during or after participation in the ACT study. If family-level changes were described, index patients and adolescents were asked whether role modeling, changes in the home food environment, meal preparation, and family functioning contributed to these changes. These mechanisms were hypothesize to be important based on existing research suggesting that parental involvement in childhood obesity interventions influences child and adolescent weight status. Thematic content analysis of transcribed interviews identified both a priori and emergent themes.Results: Eleven index patients and their adolescents participated in in-depth interviews. Index patients and adolescents both described changes to the home food environment and meal preparation. Role modeling was salient to index patients, particularly regarding healthy eating behaviors. Changes in family functioning due to study participation were not endorsed by index patients or adolescents. Emergent themes included adolescent care-taking of index patients and varying perceptions by index patients of their influence on adolescents' health behaviors.Conclusions: Our findings suggest that disease management interventions directed at high-risk adult populations may influence adolescent family members' health behaviors. We find support for the hypotheses that role modeling and changes to the home food environment are mechanisms by which family-level health behavior change occurs. Adolescents' roles as caretakers for index patients emerged as another potential mechanism. Future research should explore these mechanisms and ways to leverage disease management to support both adult and adolescent health behavior change

Continuous glucose monitors and virtual care in high-risk, racial and ethnic minority populations: Toward promoting health equity

Continuous glucose monitors (CGMs) have become an important tool to aid self-management of blood glucose for many patients with diabetes in the U.S., and the benefits of CGM use are well-documented. However, disparities in CGM use exist, with lower use in certain marginalized racial and ethnic groups. CGM may be an important and underutilized tool to help reduce inequities. Evidence supporting the use of CGMs as a part of virtual care is discussed, with an emphasis on designing virtual diabetes care programs to promote health equity. Recommendations for clinical practice and research are presented. In clinical practice, CGM should be an option for all people with diabetes who qualify based on clinical practice guidelines, regardless of race, ethnicity, or other individual characteristics. Future research should characterize the use of, benefit from, and preferences for CGM among individuals from racial and ethnic groups to guide interventions at the health system, clinic, provider, and patient levels to promote equitable, evidence-based, and guideline-directed CGM use in marginalized racial and ethnic groups with diabetes

The TALKS study to improve communication, logistical, and financial barriers to live donor kidney transplantation in African Americans: protocol of a randomized clinical trial

Background Live donor kidney transplantation (LDKT), an optimal therapy for many patients with end-stage kidney disease, is underutilized, particularly by African Americans. Potential recipient difficulties initiating and sustaining conversations about LDKT, identifying willing and medically eligible donors, and potential donors’ logistical and financial hurdles have been cited as potential contributors to race disparities in LDKT. Few interventions specifically targeting these factors have been tested. Methods/Design We report the protocol of the Talking about Living Kidney Donation Support (TALKS) study, a study designed to evaluate the effectiveness of behavioral, educational and financial assistance interventions to improve access to LDKT among African Americans on the deceased donor kidney transplant recipient waiting list. We adapted a previously tested educational and social worker intervention shown to improve consideration and pursuit of LDKT among patients and their family members for its use among patients on the kidney transplant waiting list. We also developed a financial assistance intervention to help potential donors overcome logistical and financial challenges they might face during the pursuit of live kidney donation. We will evaluate the effectiveness of these interventions by conducting a randomized controlled trial in which patients on the deceased donor waiting list receive 1) usual care while on the transplant waiting list, 2) the educational and social worker intervention, or 3) the educational and social worker intervention plus the option of participating in the financial assistance program. The primary outcome of the randomized controlled trial will measure potential recipients’ live kidney donor activation (a composite rate of live donor inquiries, completed new live donor evaluations, or live kidney donation) at 1 year. Discussion The TALKS study will rigorously assess the effectiveness of promising interventions to reduce race disparities in LDKT. Trial registration NCT02369354

Protocol of a Randomized Controlled Trial of Culturally Sensitive Interventions to Improve African Americans' and Non-African Americans' Early, Shared, and Informed Consideration of Live Kidney Transplantation: The talking about Live Kidney Donation (TALK) study

<p>Abstract</p> <p>Background</p> <p>Live kidney transplantation (LKT) is underutilized, particularly among ethnic/racial minorities. The effectiveness of culturally sensitive educational and behavioral interventions to encourage patients' early, shared (with family and health care providers) and informed consideration of LKT and ameliorate disparities in consideration of LKT is unknown.</p> <p>Methods/Design</p> <p>We report the protocol of the Talking About Live Kidney Donation (TALK) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test culturally sensitive interventions to improve patients' shared and informed consideration of LKT. Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT. In Study Phase 2, we are currently conducting a randomized controlled trial in which participants with progressing chronic kidney disease receive: 1) usual care by their nephrologists, 2) usual care plus the educational materials, or 3) usual care plus the educational materials and the social worker intervention. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LKT (including family discussions of LKT, patient-physician discussions of LKT, and identification of an LKT donor). We will also assess differences in rates of consideration of LKT among African Americans and non-African Americans.</p> <p>Discussion</p> <p>The TALK Study rigorously developed and is currently testing the effectiveness of culturally sensitive interventions to improve patients' and families' consideration of LKT. Results from TALK will provide needed evidence on ways to enhance consideration of this optimal treatment for patients with end stage renal disease.</p> <p>Trial Registration</p> <p>ClinicalTrials.gov number, <a href="http://www.clinicaltrials.gov/ct2/show/NCT00932334">NCT00932334</a></p

Family Members' Experiences With Dialysis and Kidney Transplantation.

Rationale &amp; objectiveUnderstanding whether family members' experiences with patients' treatment for end-stage kidney disease (ESKD) were expected could guide the development of family-centered interventions that enhance the preparedness of patients and their care partners for kidney replacement therapies. We explored unexpected negative experiences with ESKD treatments among family members of dialysis and posttransplantation patients to identify meaningful directions for family-centered research and clinical care.Study designQualitative study.Setting &amp; participants8 focus groups comprising 49 family members of dialysis patients and living donor kidney transplant recipients undergoing medical care in Baltimore, MD.Analytical approachFocus groups were stratified by patients' treatment (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or living donor kidney transplantation) and family members' self-reported race (African American vs non-African American), resulting in 2 groups per treatment experience. Inductive thematic analysis was used to identify themes in focus group transcripts. Themes shared across different treatment groups were highlighted to provide insight into common experiences.ResultsWe identified 4 themes that described family members' unexpected negative treatment experiences: becoming a care partner (unanticipated responsibilities and sleep disruptions), adverse psychological treatment responses in patients (eg, depression) and family members (eg, anxiety), treatment delivery and logistics (insufficient information, medication regimen, and logistical inconveniences), and patient morbidity (dialysis-related health problems and fatigue). All themes were relevant to discussions in the in-center hemodialysis, peritoneal dialysis, and transplantation groups, whereas psychological responses and morbidity themes did not reflect discussions in home hemodialysis groups.LimitationsData collection occurred from 2008 to 2009; family members were recruited through patients undergoing care in 1 geographic area; 1 family member participant per patient.ConclusionsFamily members described a broad range of unexpected negative experiences with ESKD treatments. Efforts to prepare families for ESKD treatments through more family-centered care, early and tailored education, and interventions targeting care partner preparedness, health provider-family member communication, and relationship dynamics in family member-patient dyads are needed

Family Members' Experiences With Dialysis and Kidney Transplantation.

Rationale &amp; objectiveUnderstanding whether family members' experiences with patients' treatment for end-stage kidney disease (ESKD) were expected could guide the development of family-centered interventions that enhance the preparedness of patients and their care partners for kidney replacement therapies. We explored unexpected negative experiences with ESKD treatments among family members of dialysis and posttransplantation patients to identify meaningful directions for family-centered research and clinical care.Study designQualitative study.Setting &amp; participants8 focus groups comprising 49 family members of dialysis patients and living donor kidney transplant recipients undergoing medical care in Baltimore, MD.Analytical approachFocus groups were stratified by patients' treatment (in-center hemodialysis, home hemodialysis, peritoneal dialysis, or living donor kidney transplantation) and family members' self-reported race (African American vs non-African American), resulting in 2 groups per treatment experience. Inductive thematic analysis was used to identify themes in focus group transcripts. Themes shared across different treatment groups were highlighted to provide insight into common experiences.ResultsWe identified 4 themes that described family members' unexpected negative treatment experiences: becoming a care partner (unanticipated responsibilities and sleep disruptions), adverse psychological treatment responses in patients (eg, depression) and family members (eg, anxiety), treatment delivery and logistics (insufficient information, medication regimen, and logistical inconveniences), and patient morbidity (dialysis-related health problems and fatigue). All themes were relevant to discussions in the in-center hemodialysis, peritoneal dialysis, and transplantation groups, whereas psychological responses and morbidity themes did not reflect discussions in home hemodialysis groups.LimitationsData collection occurred from 2008 to 2009; family members were recruited through patients undergoing care in 1 geographic area; 1 family member participant per patient.ConclusionsFamily members described a broad range of unexpected negative experiences with ESKD treatments. Efforts to prepare families for ESKD treatments through more family-centered care, early and tailored education, and interventions targeting care partner preparedness, health provider-family member communication, and relationship dynamics in family member-patient dyads are needed

"I Wish Someone Had Told Me That Could Happen": A Thematic Analysis of Patients' Unexpected Experiences With End-Stage Kidney Disease Treatment.

BackgroundPreparedness regarding prognosis and treatment options enables patients to cope with uncertainties, make value-based treatment decisions, and set treatment goals. Yet, little is known about the expectedness of end-stage kidney disease (ESKD) patients' treatment experiences beyond their desire for better treatment education.ObjectiveTo describe unexpected adverse treatment experiences among ESKD patients.MethodThe authors conducted 7 focus groups with 55 dialysis patients and living-donor kidney transplantation recipients receiving medical care in Baltimore, Maryland. Data were analyzed thematically. Themes present in different treatment groups were highlighted to provide insight into common experiences.ResultsThe authors identified 5 themes: (1) psychological reactions, (2) constrained freedom of choice, (3) treatment delivery and logistics, (4) morbidity, and (5) finances.ConclusionPatients were unprepared for nonclinical, logistical, and clinical aspects of ESKD treatment. The need for providers' use of tailored preparatory techniques and the development of pretreatment interventions to help patients know what to expect from and feel psychologically prepared for treatment, particularly with respect to nonclinical implications, is critical. These efforts have great potential to improve patients' treatment experiences