Caregiver support, burden, and long-term planning among caregivers of individuals with intellectual and developmental disabilities: A cross-sectional study.

BACKGROUND: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. METHODS: A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives. RESULTS: Caregivers (n = 405) were predominantly parents, female, non-Hispanic, and in the 'learning to plan' stage of LTCP. Caregiver-identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001). CONCLUSION: Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.

Health Care Utilization by Adolescent/Young Adult Patients With Sickle Cell Disease in Delaware.

Patients with sickle cell disease transition from the pediatric to the adult health care system during a vulnerable time in their lives, resulting in increased morbidity and mortality during this adolescent/young adult (AYA) period. The purpose of this study is to examine the health care utilization of a cohort of adolescent/young adult patients with sickle cell disease in the main adult health care system in Delaware. Analysis of an electronic health record (EHR) data set of emergency department encounters and inpatient admissions for all patients with sickle cell disease between July 2016 and June 2017 was performed. This revealed significant variability in health care utilization by adolescent/young adult patients with sickle cell disease. There was a small cohort of high utilizer patients with multiple emergency department visits and inpatient admissions. These high-utilizing patients might benefit from targeted interventions and a primary care medical home. By analyzing health care utilization and identifying the needs of this chronic disease cohort, a comprehensive care program specifically for adolescents/young adults could be developed to address the needs of the patients and to correct the gaps in the current system.

Identifying key components of a web-based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities.

BACKGROUND: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. METHODS: We conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions. Participants also answered questions on demographic characteristics and functional status. RESULTS: NVivo qualitative analysis software was used to analyse focus groups using a grounded theory approach. Caregivers identified web tool accessibility and topics such as finances, housing, and government benefits as critical. Caregivers also described desired features for a LTC planning tool. CONCLUSIONS: This study identified desired characteristics of web-based LTC planning tools and ways in which existing web-based interventions might be adapted or enhanced.

The Crisis Close at Hand: How COVID-19 Challenges Long-Term Care Planning for Adults with Intellectual Disability.

Whether cared for in the community or in a facility, adults with intellectual disability are among the most vulnerable individuals in the United States. Families caring for these individuals face financial, social, and emotional stress as they navigate long-term care choices for their loved ones. COVID-19 has stressed an already overwhelmed and disparate system.

Assessing the Acceptability of a Peer Mentor Mother Intervention to Improve Retention in Care of Postpartum Women Living with HIV.

Background: Many women living with HIV (WLWH) experience poor postpartum retention in HIV care. There are limited evidence-based interventions in the United States aimed at increasing retention of WLWH postpartum; however, evidence from low-resource settings suggest that women who receive peer mentoring experience higher retention and viral suppression postpartum. Methods: We conducted 15 semistructured interviews with pregnant or postpartum women from an urban U.S. clinic to assess factors influencing maternal adherence to antiretroviral therapy (ART) and retention in HIV care. We then assessed the acceptability of a peer intervention in mitigating barriers to sustain adherence and retention in care postpartum. Interviews were audio taped, transcribed, and analyzed. Codes were developed and applied to all transcripts, and matrices were used to facilitate comparisons across different types of participants. Results: Participants included low-income black and Hispanic women with a mean age of 31 years (range 22-42). Social support and concern for infants' well-being were strong facilitators for engaging in care. Psychosocial challenges, such as stigma and isolation, fear of disclosure, and depression, negatively influenced adherence to ART and engagement in care. Regardless of their level of adherence to ART, women felt that peer mentoring would be an acceptable intervention to reinforce skill-related ART adherence and sustain engagement in care after delivery. Conclusion: A peer mentor mother program is a promising intervention that can improve the care continuum of pregnant and postpartum women in the United States. Messaging that maximizes maternal support and women's motivation to keep their infant healthy may leverage retention in care postpartum.

Measuring Organizational Cultural Competence to Promote Diversity in Academic Healthcare Organizations.

Purpose: To evaluate what drives respondent perceptions of health system organizational cultural competence. Methods: We estimated associations between survey respondent (n=3506) demographic characteristics, length of employment, position, and place of work and their reported perceptions of institutional culture. Results: In adjusted analyses, respondents self-identifying as non-Hispanic black versus non-Hispanic whites, females versus males, and lesbian/gay/bisexual/transgender/queer versus heterosexuals were significantly less likely to rank the cultural competence of their organization above average. Conclusion: Minorities and women were less likely to rank their organization as culturally competent. Organizational efforts to achieve cultural competency would benefit from measuring this factor to target their efforts.

Support for Self-Management and Prenatal Health Behavior Change: Implications for Pediatric Promotion of Interconception Care.

Pediatricians increasingly endorse a dual generation approach to health, in which parental health behaviors are recognized as critical to promoting child health. Positive parental behaviors often emerge during pregnancy, for reasons that remain incompletely described. We surveyed mothers in the immediate postpartum period to identify beliefs about health behavior change and characteristics of prenatal care associated with successful change. Sampling at a tertiary care hospital captured an English-speaking adult population with healthy infants. Respondents (n = 225) were predominantly non-Hispanic Black (64%) and Medicaid insured (44%). Most (71%) reported successful behavior change during pregnancy. Of those reporting change, 91% intended to sustain behaviors postnatally. Most believed that sustained change was important for their own health (94%) and their infant's health (93%). In logistic regression, support for self-management was associated with prenatal health behavior change (odds ratio = 1.64, 95% confidence interval = 1.09-2.46). Continued support for self-management by pediatricians may benefit long-term family health.

The genesis of systems of care for transition to adulthood services: emerging models in primary and subspecialty care.

PURPOSE OF REVIEW: Transitioning adolescents and young adults with chronic conditions can be complex. Expert recommendations support a transition process that starts in early adolescence, provides continuous guidance and support and allows for care opportunities with patients and caregivers, with the patient alone and between paediatric and adult providers. As most of the guidance is focused on individual patients, providers and clinical programmes, much less is known about how health systems as a whole might support effective transitions of care. RECENT FINDINGS: Many intervention studies focus on the preparation necessary to successfully transition adolescents, young adults and their families to adult care. Although randomized controlled trials of transition interventions are few and standards of care not yet established, promising models are being developed and tested. This review will describe the development and implementation of emerging models of transitional care in primary and subspecialty care, paying special attention to evaluation outcomes that can inform model selection. SUMMARY: The emerging models described here highlight the importance of and guidance for invested clinicians and health systems to create effective methods for successful transition. Additional research using rigorous methodology is necessary.

Preparing for a trial to test a postpartum weight retention intervention among low income women: feasibility of a protocol in a community-based organization.

BACKGROUND: Postpartum weight retention (PPWR) causes intergenerational harm, negatively affecting a mother's cardiovascular health and ability to have future healthy pregnancies. Low-income minority women are at highest risk for PPWR with little guidance concerning timeline or strategy to lose weight after delivery. An academic-community partnership conducted observational and focus group work to develop an intervention for PPWR among low-income mothers. This study's objective is to determine the feasibility of implementing a PPWR intervention trial in partnership with a community-based organization (CBO) serving low-income families with social service support. METHODS: We analyzed five implementation outcomes in this feasibility study: acceptability, adoption, appropriateness, penetration, and sustainability. Other secondary outcomes were the change in psychosocial and clinical outcomes from baseline to one year following the intervention delivery. RESULTS: An academic-community partnership developed and piloted a postpartum weight retention intervention among 17 participants that included 1) six weeks of interactive daily health texting, 2) exercise assistance with baby carrier, home exercise program, and pedometer provision, 3) two live healthy eating and baby feeding workshops, and 4) two 45-min home visits over one year to provide social support and acquire followup data. Implementation outcomes demonstrate an intervention supported by the organization and accepted by end-users, with increased capacity of the CBO to test and deliver an effective intervention. Weight loss was achieved by the majority of participants at one year (Md - 5 pounds (IQR = - 14.5 - 0.3). CONCLUSION: We made protocol enhancements to the developed intervention based on the analysis of this study, and now prepare for a funded randomized controlled trial (RCT) in a community-based setting. Our central hypothesis is that low-income women who participate in a multi-component, low cost-intervention delivered by a CBO will have less postpartum weight retention than those women who do not participate in the program. TRIAL REGISTRATION: The trial was retrospectively registered, ID NCT02867631, 8/11/16.

The Development of a Postpartum Weight Management Intervention for Low-Income Women: End-User Perspectives as Groundwork.

BACKGROUND: Postpartum weight retention (PPWR) leads to increased rates of maternal and childhood obesity, especially among low-income families. Literature is sparse regarding interventions to address PPWR. OBJECTIVE: To gain practical insight into low-income women's preferences and opinions regarding PPWR management at a community-based organization (CBO). METHODS: Mixed female focus groups composed of CBO staff and clients (n = 17) were asked open-ended questions about PPWR and potential intervention components. Systematic analysis of the discussions was performed to identify overarching themes. CONCLUSIONS: The tenets of community-engaged research state the necessity of developing community-based interventions with initial input and partnership with the potential end-users. In this study, low-income women were eager to share their thoughts about the postpartum period and potential solutions to correct unhealthy weight, thus completing a critical step in intervention development. The majority of women wanted to manage their weight in the postpartum setting, but needed structure, social support, assurance they would not injure themselves or their babies, and time saving strategies to do so.

Role of Ezetimibe in Lipid-Lowering and Cardiovascular Disease Prevention.

With the goal of decreasing low-density cholesterol (LDL-C) to mitigate risk of both primary and secondary cardiovascular outcomes, statins have been the cornerstone of therapy, significantly reducing the incidence of coronary atherosclerotic vascular disease. Previous studies suggest that adding other non-statin LDL-lowering agents may further lower LDL-C without negative side effects. Recent guidelines support the hypothesis that driving the LDL-C level below previously recommended targets may have a beneficial effect. Ezetimibe, a cholesterol absorption blocker that inhibits the Niemann-Pick C1-Like 1 (NPC1L1) receptor, has been the focus of recent trials that support its use in cardiovascular risk reduction. For patients not at goal on statin therapy alone, ezetimibe has proven to be a safe, well-tolerated medication that may be used as an adjunct to statin therapy to further reduce LDL-C, resulting in a significant mortality benefit.

Who develops carpal tunnel syndrome during pregnancy: An analysis of obesity, gestational weight gain, and parity.

PURPOSE: To examine the prevalence, onset, and risk factors of carpal tunnel syndrome during pregnancy. METHODS: Maternal electronic medical records were linked to birth certificate records using social security number. The outcome of carpal tunnel syndrome during pregnancy was defined as ICD9 code 354.0 given at a prenatal visit. Chi-square, t-test, and adjusted logistic regression were performed. RESULTS: We analyzed 17,623 prenatal visits from the Hospital of the University of Pennsylvania from 1/2003-12/2007. Mean maternal age was 26.4 (6.5) years, with 21% white, 69% black, and 46% overweight or obese. Ninety-one (2.8%) mothers participated in 765 prenatal visits given a carpal tunnel syndrome diagnosis code. Compared to mothers without carpal tunnel syndrome, mothers with carpal tunnel syndrome were older (29.72 (5.42) versus 26.04 (6.37) years, p = 0.005), gained more weight during pregnancy (40.65 (10.13) pounds versus 34.2 (9.41) pounds, p = 0.04), and more likely to have college education (69.9% versus 44.5%, p = 0.03). Average onset (SD) of carpal tunnel syndrome was 18.1 (8.4) weeks' gestation. CONCLUSION: Mothers with carpal tunnel syndrome had high rates of overweight, obesity, and excessive gestational weight gain. Diagnosis of carpal tunnel syndrome was rare but often occurred in the first and second trimesters, earlier than the frequently reported third trimester onset seen in literature. When looking at predictors of carpal tunnel syndrome, obese prepregnancy body mass index (BMI ≥ 30 kg/m(2)) and excessive gestational weight gain, greater than two previous live births, higher level of maternal education and more prenatal care (>10 visits) were associated with increased risk of carpal tunnel syndrome. Higher maternal age was not associated with carpal tunnel syndrome diagnosis after adjusting for weight and parity, suggesting mediation by these covariates.

Psychosocial factors associated with gestational weight gain in a low-income cohort.

BACKGROUND: Excessive gestational weight gain (GWG) causes negative maternal and child outcomes. Literature is sparse regarding reasons in high-risk low-income women. PURPOSE: Assess psychosocial factors associated with GWG using an adapted instrument based on the theory of planned behavior (TPB). METHODS: Community health workers surveyed 101 low-income postpartum women. RESULTS: Mean (SD) age was 24.6 (5.7) years, with 7% White, 66% Black, 22% Hispanic. Over half (58%) of the women reported overweight or obese body mass indices (BMI) prior to pregnancy; 49% had excessive GWG. Theory of planned behavior-informed constructs associated with less GWG included internal weight locus of control (B=-11.6 (221.4, 21.9) pounds) and higher self-efficacy (B=-1.3 (22.6, 0) pounds). Perinatal depression was associated with increased GWG (B=0.88 (0.1, 1.7) pounds). CONCLUSION: The theory of planned behavior is useful in understanding the association of psychosocial factors and GWG. More research is warranted to evaluate the generalizability of the findings prior to the development of an effective intervention.

Misreport of gestational weight gain (GWG) in birth certificate data.

Birth certificates are potentially a valuable source of information for studying gestational weight gain (GWG) during pregnancy, particularly important given new Institute of Medicine (IOM) guidelines. We examined factors associated with the accuracy of maternal GWG self-report by linking the gold standard obstetric electronic medical record (EMR) of women from a large urban practice to state birth certificates. Primary outcomes included maternal under-reporting of GWG (>10 lbs below the EMR), accurate reporting (within 10 lbs), and over-reporting (>10 lbs above EMR). Data were stratified across categories of pre-pregnancy body mass index (BMI) and the actual GWG IOM categories (inadequate, adequate, and excessive) acquired in the clinical setting and recorded in the EMR. Among 1,223 women, mean (SD) age was 27.4 (6.2) years, mean (SD) BMI was 28.2 (8.1) kg/m(2), and mean GWG was 26.0 (20.2) pounds. The majority of women with normal BMI (<25 kg/m(2)) and adequate GWG reported GWG accurately (78.8%), more so than any other group. After adjusting for age, race, insurance status, and number of prenatal visits, among women with actual adequate GWG, women with high BMI (≥25 kg/m(2)) were more likely to over-report GWG than women with normal BMI (RR 4.7, 95% CI 2.6-8.4). In patients with normal BMI, women with excessive GWG were more likely to under-report than women with adequate GWG (RR 6.0, 95% CI 3.0-12.1). Such findings raise concern for systematic bias that would limit the use of birth certificate data for studying population trends in GWG.