Caregiver Engagement Research Articles

Preliminary Investigation of the Influence of Treatment Regimen on Outcomes in Behavioral Parent Training

Caregiver engagement and implementation of behavioral strategies are essential to effective interventions targeting childhood behavior problems. The aim of this preliminary investigation was to better understand caregiver decision-making when selecting different treatment regimens in an open trial format. Treatment packages included: (1) an intensive treatment program (ITP), involving a compressed 20-hour intervention occurring 2 hours per day for 10 days; and (2) a standard dosage treatment as usual (TAU) behavioral treatment program, involving weekly 50-minute appointments. Sixty-seven families with a child between 4–11 years old (M age = 5.82) with clinically significant problem behaviors self-referred to a hospital-based outpatient behavior therapy program. Results suggest that while caregivers chose a standard treatment regimen at a ratio of 2:1, compressed treatment (ITP) was associated with increased caregiver engagement and more significant reductions in child target behavior using both direct and indirect measures. Findings provide preliminary support for the use of high dosage treatment regimens as a means of increasing caregiver engagement and in the reduction of problem behavior in young children.

Roles and experiences of informal caregivers of older adults in community and healthcare system navigation: a scoping review

ObjectiveInformal caregivers are playing a vital role in improving the degree to which older adults access community and healthcare systems in a more seamless and timely manner, thereby fulfilling their...

Analysis of Latino family caregiver engagement with CuidaTEXT, a text message intervention for dementia caregiver support

AbstractBackgroundThe potential of text message caregiver support interventions to improve dementia care outcomes is still to be exploited. This study aims to explore participants’ engagement with a text message intervention for dementia caregiver support, and its association with acceptability and clinical outcomes. We hypothesize that a higher engagement with CuidaTEXT will be associated with increases in caregivers’ satisfaction with the intervention and decreases in depression.MethodCuidaTEXT is a six‐month, bilingual, and bidirectional intervention tailored to caregiver needs (e.g., education, problem‐solving, resources). We enrolled 24 Latino caregivers in a one‐arm feasibility trial. Participants received approximately one automatic daily text message. Participants could receive automatic on‐demand messages by sending specific keywords (e.g., STRESS for messages about stress coping) and on‐demand responses during business hours by chat‐texting with a live coach. In this secondary analysis, we calculated associations between the total number of text messages (engagement) and outcomes (primarily caregiver satisfaction and depression).ResultParticipants sent 1,847 messages to CuidaTEXT; 6.5% sent no messages (no engagement), 0.0% less than 10 (low), 29.0% between 10 and 49 (medium), 22.6% between 50 and 99, and 19.4% more than 100 (high). Engagement was associated with intervention satisfaction (r = 0.6, p = 0.007) and secondary acceptability outcomes (perceptions that CuidaTEXT provided help for their loved one with dementia: r = 0.6, p = 0.003; and to understand dementia: r = 0.6, p = 0.008) except for perceptions that CuidaTEXT provided help for themselves as caregiver (r = 0.3, p = 0.173). Engagement was not associated with change in caregiver depression (r = ‐0.0, p = 0.922) or secondary clinical outcomes (caregiving competence: r = 0.4, p = 0.104; and behavioral symptom‐related distress: r = 0.4, p = 0.076).ConclusionText message engagement is associated with satisfaction but not depression. Encouraging interaction with CuidaTEXT might lead to higher levels of satisfaction with the intervention. However, future research should determine the directionality of these associations.

Real-world evidence generation from patients, their caregivers and physicians supporting clinical, regulatory and guideline decisions: an update on Disease Specific Programmes

Objective To update on and describe the role of Disease Specific Programmes (DSPs), a multi-perspective real-world data (RWD) source, in the context of the evolution of the value and acceptance of real-world evidence (RWE) in clinical, regulatory and guideline decision-making. Methods DSPs are multi-national, multi-subscriber, multi-therapy cross-sectional surveys incorporating retrospective data collection from patient, caregiver and physician perspectives. Information collected covers the patient journey, including treatment/prescribing patterns and rationale, patient-reported outcomes, impact on work and everyday activities, attitudes towards and perceptions of the condition, adherence to treatment and burden of illness. Published peer-reviewed DSP papers were aligned with current key RWE themes identified in the literature, alongside their contribution to RWE. Results RWE themes examined were: using RWE to inform clinical practice, patient and caregiver engagement, RWE role in supporting health technology assessments and regulatory submissions, informing value-driven healthcare decisions, real-world patient subgroup differences and therapeutic inertia/unmet needs; highlighting patients’ and caregivers’ experience of living with a disease, disconnect from their physicians, unmet needs and educational gaps. Conclusions DSPs provide a wealth of RWD in addition to evidence generated by registries, clinical trials and observational research, with wide use for the pharmaceutical industry, government, funding/regulatory bodies, clinical practice guideline insights and, most importantly, informing improvements in people’s lives. The depth, breadth and heritage of information collected via DSPs since 1995 is unparalleled, extending understanding of how diseases are managed by physicians in routine clinical practice and why treatment choices are made, patients’ perceptions of their disease management, and caregiver burden.

Strategies to improve the care of older adults 50 years and above living with HIV in Uganda

IntroductionWith effective antiretroviral therapy (ART), many persons living with HIV (PLHIV) live to old age. Caring for aged PLHIV necessitates the engagement of caregivers and patients to establish agreed-upon goals of treatment. However, there is limited literature on friendly and centered models of care for elderly PLHIV. We explored strategies to improve care in HIV clinics among PLHIV aged 50 years and above in Uganda.MethodsWe conducted 40 in-depth interviews in two hospitals with elderly PLHIV aged 50 years and above who had lived with HIV for more than ten years. We explored strategies for improving care of elderly PLHIV at both health facility and community levels. The in-depth interviews were audio-recorded and transcribed verbatim. The thematic approach guided data analysis.ResultsThe elderly PLHIV suggested the following strategies to improve their care: creating geriatric clinics; increasing screening tests for non-communicable diseases in the ART clinics; community and home-based ART delivery; workshops at health facilities to provide health education on aging effectively; creating community support groups; financial assistance for the elderly PLHIV and advances in science.ConclusionsThere is need to improve community HIV care especially for the elderly and social and economic support in the community. Involving the elderly PLHIV in developing strategies to improve their health goes a long way to improve the patients' quality of care. There is a need to incorporate the raised strategies in HIV care or older adults.

Individual-Level Social Determinants of Health (SDOH) Measures and Treatment Complications in Acute Leukemia

Background Population studies demonstrate widening survival disparities in AML survival. In our previous analysis, census tract-based measures of socioeconomic status accounted for most of the AML death disparity for non-Hispanic Black (NHB) and Hispanic patients (pts) suggesting that patients' social and physical environments contribute to poor AML endpoints (Abraham et al. Blood 2022). However, these data are retrospective and only provide neighborhood-level information. We prospectively collected individual level data on SDOH and linked this to treatment delivery and complications. Methods Patients were prospectively enrolled from two institutions: a comprehensive cancer center and a minority-serving cancer center for a planned 2 year follow-up. A mixed-methods approach utilized validated questionnaires and semi-structured interviews administered to patients 30-90 days from diagnosis and data was collected on adherence, falls, infections, ER visits, hospitalizations, and ICU admission. Quantitative measures included patient neighborhood and environmental living conditions (AHC HRSN), health literacy (CHLT-6), financial toxicity (COST-FACIT), medication affordability/adherence (ARMS), and mental health (PHQ-4). Quantitative data was supplemented with qualitative data from semi-structured interviews from a subset of patients. We used linear regression to estimate statistical differences in means between groups. Results We report results from 52 patients, predominantly with AML and high-risk MDS followed for up to 6 months. Baseline characteristics are summarized in Table 1. Median age was 62 years. 38% were non-Hispanic White (NHW), 25% NHB, and 23% Hispanic and lived in socioeconomically diverse census tracts. Half the cohort had a high school education or less. 40% had an annual income level < $25,000. 40% pts had a Charlson comorbidity index (CCI) ≥ 5. On the AHC HRSN tool, housing and food insecurity were reported in 10% and 15%, respectively, 40% reported difficulty paying for basic needs and 22% loneliness/isolation. In terms of care delivery, pts aged ≥ 65 years were more likely to miss clinic visits (p=0.026) and chemotherapy treatments (p=0.005). Non-white (p=0.13) pts and those on public insurance (p=0.04) were also more likely to miss clinic visits. Education level, income, and marital status were not associated with missed visits/treatments. Assessing treatment complications 60% of ER visits occurred with annual household incomes under $50,000 (p=0.048). Education and insurance were also linked to treatment morbidity, with 75% of ICU admissions having a high school education or less (p=0.09) and 83% having Medicare or Medicaid (p=0.087). Rates of mechanical ventilation mirrored these findings. Education was associated with lower rates of discharge to SNF or SAR, 72% of college or higher-educated pts were discharged home (p=0.035). Fall rates and infectious complications did not differ based on SDOH. Interestingly age and CCI did not distinguish between any of these treatment complications. Validated patient reported measures of social vulnerability were next examined as predictors of treatment adherence and complications (Table 2). The mean COSTFACIT was 9.8 lower (95% CI -17.6 to -1.93) in those with ER visits than those without ER visits (p=0.061). The mean CHLT-6 score was 0.96 lower (95% CI -1.8 to -0.09) in pts admitted to the ICU (p = 0.03). The PHQ-4 score did not differ based on any complication. Discussion This study represents the first attempt to prospectively link patient reported SDOH to treatment delivery and early complications in leukemia and provides valuable insights into targetable barriers to overcome disparities. Age was the most significant risk factor for missed clinic visits and chemotherapy doses. Older pts may benefit from navigators, caregiver engagement, tailored education given increased reliance on complex outpatient regimens. Treatment complications were strongly associated with SDOH, including education and household income. These findings suggest that pre-treatment ‘fitness’ assessments and greater home-based visits during treatment may mitigate ER visits and life-threatening complications. Importantly, quantitative SDOH measures such as COST-FACIT and CHLT-6 can prospectively identify patients at risk of early complications and become an important tool to triage these resources.

Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit.

The engagement of family caregivers in oncology is not universal or systematic. We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad's responses to the care team to inform clinicians and connect the caregiver to resources as needed. We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed "quite a bit" (n=1, 16.7%) or "very much" (n=3, 50%) that the system allowed them to provide better care. Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.

Barriers to engagement of patients in medication reconciliation.

362 Background: Medication reconciliation (MedRec) is a process where a detailed medication list is compiled and reviewed with an appropriate health care professional for completeness and drug-drug interactions, then communicated across all of the patient’s healthcare teams. While effective MedRec can minimize the risk of adverse events, uptake in outpatient oncology can be poor. Engagement of patients and caregivers in collection of medication lists through patient portals has been suggested as a potential change idea to improve uptake. To understand barriers and facilitators of patient engagement in the MedRec process through an electronic patient portal we undertook semi structured interviews in a comprehensive cancer center in Ontario, Canada. Methods: Patients in outpatient oncology clinics and chemo-daycare waiting areas were approached to participate in interviews; as we wished to understand barriers both users and non-users of the medication list feature of the patient portal were eligible to participate. Participant recruitment continued until saturation of data was reached. Interviews were carried out virtually following a semi-structured guide between 08/2022 and 12/2022. Interviews were recorded and transcribed verbatim; thematic coding was completed in NVIVO by two members of the study team. Results: A total of 10 patients participated in interviews; participants ranged in age between 30 to 89 years, and all completed post-secondary education. Patients’ emphasized issues with provider/care team communication expressing it was unclear why they were asked to enter medications and did not know if anyone was reviewing the medications entered. Additionally, patients had a fear of inputting erroneous medications resulting in their overall avoidance to use the portal. Portal features such as the use of generic vs trade name medications created lack of clarity for patients when entering medications into the system. Presently, the language is limited to English which may reduce the number of users. Accessibility issues such as font size and overall layout, especially on mobile devices were noteworthy during interviews. Patients recommended the addition of the following features: refill information including requests, medication reminder features via text/email and linkable medication information. Conclusions: Our findings indicate that although patients are using the portal to upload their medication lists, there are technical and systemic improvements that can be made to increase patient usage. In addition to updates to the patient portal to create added value to patients, and improve comprehension and accessibility, patient education is needed to raise awareness of the importance of MedRec and their role in the process and improve buy in.

Evaluating Elements of the Care Partner Experience in Individuals Who Care for People with Alzheimer's Disease Across the Severity Spectrum.

Non-professional care partners play an important and often evolving role in the care of persons living with Alzheimer's disease (PLWAD). We investigated two elements of the care partner experience, namely time and strain incurred by care partners providing care to PLWAD across the severity spectrum. Data gathered from the Alzheimer's Disease Patient and Caregiver Engagement (AD PACE) What Matters Most (WMM) study series were analyzed to determine how much time care partners spent providing care to PLWAD based on where the care recipients lived. Additionally, quantitative assessments of weekly hours providing care and the strain experienced by care partners were conducted using the UsAgainstAlzheimer's A-LIST Insights Series survey, which included the Modified Caregiver Strain Index (MCSI). Finally, a targeted literature review was conducted to contextualize findings and characterize the existing literature landscape. Care partners in the AD PACE WMM studies (n = 139) spent significantly more hours providing care for recipients who lived with someone (mean ± standard deviation [SD], 57.3 ± 44.3h/week) than for recipients who lived alone (26.0 ± 12.0h/week) (P = 0.0096) or lived in assisted living/nursing home (23.6 ± 14.4h/week) (P = 0.0002). In the A-LIST Insights Series survey, care partners provided an overall mean (± SD) 58.1 ± 53.0h of direct care each week, with caregiving hours increasing with increasing severity of AD/AD-related dementias(AD/ADRD). Additionally, care partners for recipients with mild (n = 14), moderate (n = 111), and severe AD/ADRD (n = 91) had overall mean MCSI scores of 9.0 ± 3.8 (range 2-14), 13.3 ± 4.8 (range 4-23), and 17.5 ± 5.3 (range 4-26), respectively, with higher scores suggesting greater care partner strain. Persons living with AD require increasing levels of care along the spectrum of disease, and even individuals with early disease need care from partners. Early interventions that slow progression of AD and programs that improve family function may have beneficial impact on the experiences of care partners for recipients with mild, moderate, or severe AD.

Adopting a learning pathway approach to patient partnership in telehealth: A proof of concept

BackgroundAmidst the acceleration of digital health deployment in the province of Québec, the need to clarify the role of patients and caregivers was deemed essential to guide the deployment of telehealth strategies. A patient learning pathway (PLP) approach to patient and caregiver engagement was developed, containing knowledge, abilities, and skills mobilized by patients and caregivers at key moments of the life course with an illness, as well as emerging educational needs. ObjectiveThe objective of the current paper is to present the innovative PLP approach to patient and caregiver engagement in telehealth by applying it to three medical specialties within the context of the Québec healthcare system: dermatology, oncology, and mental health/psychiatry. MethodsThe PLP methodology is constituted of five chronological phases: 1) identification and engagement of main stakeholders; 2) exploration; 3) recruitment of patient and caregiver partners; 4) co-development of PLP first draft; and 5) validation and consensus building regarding competencies. ResultsThree PLPs (dermatology, oncology, and mental health/psychiatry) have already been mapped using this participatory approach, showing that the proposed PLP approach to patient and caregiver engagement in telehealth is feasible. ConclusionsMapping patient and caregiver competencies organized throughout patients' life course with an illness can lead to a highly operationalizable tool, which relevant stakeholders can use in a way that promotes patient self-management, shared decision-making, and empowerment. InnovationThe five-step PLP methodology developed proposes an innovative and structured approach to partnership with patients and caregivers in telehealth by outlining their roles throughout their life course with an illness.

Processes for identifying caregivers and screening for caregiver and patient distress in community oncology: results from WF-1803CD.

Despite their vital roles, informal caregivers of adult cancer patients are commonly overlooked in cancer care. This study describes processes for identifying cancer caregivers and processes for distress screening and management among caregivers and patients in the understudied community oncology setting. Supportive care leaders from the National Cancer Institute Community Oncology Research Program practices completed online survey questions regarding caregiver identification, caregiver and patient distress screening, and distress management strategies. We described practice group characteristics and prevalence of study outcomes. Multivariable logistic regression explored associations between practice group characteristics and caregiver identification in the electronic health record (EHR). Most (64.9%, 72 of 111) supportive care leaders reported routine identification and documentation of informal caregivers; 63.8% record this information in the EHR. Only 16% routinely screen caregivers for distress, though 92.5% screen patients. Distress management strategies for caregivers and patients are widely available, yet only 12.6% are routinely identified and screened and had at least 1 referral strategy for caregivers with distress; 90.6% are routinely screened and had at least 1 referral strategy for patients. Practices with a free-standing outpatient clinic (odds ratio [OR] = 0.29, P = .0106) and academic affiliation (OR = 0.01, P = .04) were less likely to identify and document caregivers in the EHR. However, higher oncologist volume was associated with an increased likelihood of recording caregiver information in the EHR (OR = 1.04, P = .02). Despite high levels of patient distress screening and management, few practices provide comprehensive caregiver engagement practices. Existing patient engagement protocols may provide a promising platform to build capacity to better address caregiver needs.

Protocol for a randomized controlled trial to evaluate a year-long (NICU-to-home) evidence-based, high dose physical therapy intervention in infants at risk of neuromotor delay.

Developmental disabilities and neuromotor delay adversely affect long-term neuromuscular function and quality of life. Current evidence suggests that early therapeutic intervention reduces the severity of motor delay by harnessing neuroplastic potential during infancy. To date, most early therapeutic intervention trials are of limited duration and do not begin soon after birth and thus do not take full advantage of early neuroplasticity. The Corbett Ryan-Northwestern-Shirley Ryan AbilityLab-Lurie Children's Infant Early Detection, Intervention and Prevention Project (Project Corbett Ryan) is a multi-site longitudinal randomized controlled trial to evaluate the efficacy of an evidence-based physical therapy intervention initiated in the neonatal intensive care unit (NICU) and continuing to 12 months of age (corrected when applicable). The study integrates five key principles: active learning, environmental enrichment, caregiver engagement, a strengths-based approach, and high dosage (ClinicalTrials.gov identifier NCT05568264). We will recruit 192 infants at risk for neuromotor delay who were admitted to the NICU. Infants will be randomized to either a standard-of-care group or an intervention group; infants in both groups will have access to standard-of-care services. The intervention is initiated in the NICU and continues in the infant's home until 12 months of age. Participants will receive twice-weekly physical therapy sessions and caregiver-guided daily activities, assigned by the therapist, targeting collaboratively identified goals. We will use various standardized clinical assessments (General Movement Assessment; Bayley Scales of Infant and Toddler Development, 4th Edition (Bayley-4); Test of Infant Motor Performance; Pediatric Quality of Life Inventory Family Impact Module; Alberta Infant Motor Scale; Neurological, Sensory, Motor, Developmental Assessment; Hammersmith Infant Neurological Examination) as well as novel technology-based tools (wearable sensors, video-based pose estimation) to evaluate neuromotor status and development throughout the course of the study. The primary outcome is the Bayley-4 motor score at 12 months; we will compare scores in infants receiving the intervention vs. standard-of-care therapy.

Early Interventionists’ Perspectives About Changes in Caregiver Coaching During COVID-19: A Mixed Methods Study

Caregiver coaching is a recommended practice in early intervention; however, many barriers exist that can prevent early interventionists (EIs) from implementing it. This mixed method study was designed to understand if EIs’ perceived use of caregiver coaching changed after Illinois’ COVID-19 pandemic stay-at-home order. Questionnaire data and interview data were analyzed together to explore changes reported by participants. Findings show that participants believed they used coaching practices and coached within routines more often following the stay-at-home order and that their changes in caregiver coaching had an impact on families (e.g., increased caregiver engagement, child progress, more meaningful intervention). Findings suggest that the stay-at-home order evoked a much-needed change in caregiver coaching. Implications include the need for research on contributors to EIs’ use of caregiver coaching and how to effectively use modeling. Implications for practice suggest that EIs should explain coaching to families and individualize their approach to promote family engagement in their children’s intervention.

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design.

Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

Qualifying the Quantified: Structural Topic Modeling Analysis of Engagement in Digital Health Platform for Dementia Caregivers

Qualitative analysis methods, while crucial for understanding complex factors influencing human behaviors like engagement with digital health technologies, can be conceptually challenging, time-consuming, and resource intensive. To address these challenges, semi-automated text analysis techniques like structural topic modeling (STM) may enhance the efficiency of qualitative analysis. This study investigates how STM can facilitate qualitative data analysis to gain insights into engagement with CareVirtue, a web-based health platform for dementia caregivers. We employed STM on interview data, using the number of CareVirtue journal posts as a covariate to represent caregiver engagement. Our STM model revealed six topics with varying levels of association with engagement. The topics of “recalling positive experiences” and “help from a care network” were associated with high engagement. These topics complement qualitative analysis by providing a deeper understanding of specific topics and demonstrate the potential of quantitative methods, such as STM, to support and augment qualitative analysis.

Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya.

Introduction: Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. Methods: This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Results: Interviews were conducted with 99 participants: 40 YLWH (median age 17.5, 50% female), 20 caregivers (70% female), and 39 SMEs (44% female). All participant groups discussed the need for HIV disclosure status assessment, confidentiality, and engagement of caregivers. Youth participants discussed the importance of clear protocol explanations and developing good rapport. All participant groups perceived youth under 18 to be harder to recruit due to a number of identified barriers. Clinic settings were the most acceptable place for recruitment. Conclusion: Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.

Unprecedented times: what we have learned about remote instruction in early childhood during the COVID-19 pandemic

ABSTRACT This article compares findings from two national surveys of remote learning for children 2-5 years old during school year one (2019–2020) of the COVID-19 pandemic to school year two (2020–2021) of the COVID-19 pandemic. The refined survey contains 45 closed-ended and five open-ended items covering seven domains: (a) demographic information; (b) preparation, guidelines, and materials for remote learning; (c) caregiver communication and engagement; (d) assessment; (e) instruction; (f) educators' levels of confidence before and after remote learning; and (g) access to services (i.e. wraparound and/or special education). Both quantitative (descriptive, regression, ANOVA, Wilcoxon signed rank test) and consensual qualitative research analyses were applied to summarize the results from 506 early childhood educators. Study results indicate that improvements in remote learning were made during the second pandemic school year. Remote learning has potential for young children if an infrastructure that allows for successful implementation is established.

Caregiver and Juvenile Justice Personnel Perspectives on challenges and importance of caregiver engagement and the potential utility of a peer navigator program in the Juvenile Justice System

BackgroundFor youth involved in the juvenile justice (JJ) system, caregiver involvement and engagement in the system is crucial for youth development and outcomes of JJ cases; however, there are challenges to establishing positive/productive partnerships between caregivers and JJ representatives. The current project examines perspectives of caregivers and JJ personnel regarding facilitators and barriers to establishing JJ-caregiver partnerships, as well as their perceptions of the use of a caregiver navigator program to support caregivers of system-involved youth. Results are used to inform development of a caregiver navigator program to support caregivers and help them navigate the JJ system.ResultsSemi-structured interviews were conducted with caregivers of youth involved in JJ (n = 15, 53% White, 93% female), JJ personnel (n = 7, 100% White, 50% female), and JJ family advisory board members (n = 5, 100% Black, 100% female). Caregivers reported varying experiences across intake/arrest, court, and probation processes. Positive experiences were characterized by effective communication and feeling supported by JJ. Negative experiences related to feeling blamed and punished for their child’s system involvement and feeling unsupported. JJ interviews corroborated caregiver sentiments and also illustrated facilitators and barriers to JJ-caregiver partnerships. Both JJ personnel and caregivers endorsed potential benefits of a peer-based caregiver navigator program to provide social, informational, and emotional support.ConclusionContinued work is needed to improve JJ-caregiver partnerships and use of a peer-based navigator program has the potential to address barriers to caregiver engagement in the JJ system.

Association between internet use and depressive symptoms among older adults: mediating role of daytime napping and moderating role of productive engagement

Objectives This study investigated the mediating role of daytime napping in the relationship between internet use and depressive symptoms among older adults. Further the moderating effect of productive engagement was assessed on the linkage between internet use and depressive symptoms. Methods We surveyed 956 Chinese community-dwelling older adults. Respondents reported their internet use for different purposes (social, informational, and instrumental use), rated their levels of depressive symptoms and of daytime napping, and reported different types of/overall productive engagement. We conducted mediation and moderation analyses to test the potential pathways of associations among those factors. Results Daytime napping mediated the association between social and informational internet use and depressive symptoms. Family caregiving, sporting activities, and overall productive engagement each moderated the relationship between internet use and depressive symptoms. Conclusion Internet use can increase the risk of depressive symptoms in older adults by increasing daytime napping. However, the benefits of internet use can be particularly salient for those who have a low level of productive engagement. The findings have implications for policies and practices that are designed to help older adults access the internet to enhance well-being.

A cross-sectional study exploring the positive aspects of caregiving in opioid dependence and its relation with quality of life, social support, and caregivers' burden.

Despite a large body of research linking caregiver burden and social support in substance dependence, positive aspects of caregiving in these disorders have received very minimal attention. This exploratory observational study aimed to assess the positive aspects of caregiving for opioid dependence and evaluate the association of these positive aspects with caregiver quality of life, burden, and social support. This cross-sectional study included 199 caregivers of patients with opioid dependence recruited through purposive sampling. Participants were assessed using the Scale for Positive Aspects of Caregiving Experience (SPACE), World Health Organization Quality of Life-BREF version, Family Burden Interview Schedule (FBIS), and Social Support Questionnaire. Of the 199 caregivers recruited, a majority of the caregivers were middle-aged women. About two-thirds of the patients were currently using opioids (n = 135, 67.8%), while the remaining were abstinent. Among the SPACE domain scores, the mean was highest for motivation for the caregiving role (2.07), which was followed by self-esteem and social aspect of caring (2.04), caregiving personal gains (1.76), and caregiver satisfaction (1.65). Caregivers of patients currently abstinent experienced greater positive aspects of caregiving (SPACE mean item score 2.57 versus 1.62, P < 0.001), and lesser burden (FBIS mean score 13.4 versus 29.3, P < 0.001). Positive aspects of caregiving can be potentially utilized for better caregiver engagement in treatment and improved caregiver outcomes.