Caregiver Outcomes Research Articles

Assessing the psychological impact of COVID‐19 on rural informal caregivers of persons living with dementia in the United States

AbstractBackgroundInformal caregivers of persons living with dementia (PLWD) in rural areas of the United States (U.S.) are a vulnerable population. During the COVID‐19 pandemic, rural communities experienced heightened disparities in social services, healthcare[1], and mortality[2], including suicides[3,4]. Yet, how the pandemic affected rural caregivers is largely unknown. We examined predictors of depression and stress, as well as self‐perceived impact of COVID‐19, among rural caregivers of PLWD.MethodAs part of the Rural Dementia Caregiver Project[5], U.S. rural informal caregivers of PLWD completed an online survey from March 1, 2021, through April 30, 2022. We conducted a mixed‐method analysis of responses to validated scales and an open‐ended question. Caregiver outcome measures include depressive symptoms[6] and stress[7]. Predictors include caregiver COVID‐19 limitations[8], loneliness[9], social isolation[10], and burden[11]. Linear regression analyses examined independent associations of predictors with outcomes, adjusting for age, sex, and caregiving hours spent per week. We completed thematic analysis of responses to the question, “How has COVID impacted your life as a caregiver?” to contextualize quantitative findings.ResultA total of 152 rural caregivers completed the survey, and of those 127 responded the open‐ended question. Most (81%) caregivers were aged 50 years and older, and 82% were female. Factors positively associated with caregiver depressive symptoms were loneliness (β = 0.72, p<0.0001) and burden (β = 3.18, p<0.01). Factors positively associated with caregiver stress were loneliness (β = 0.22, p<0.05) and burden (β = 1.28, p<0.05). COVID‐19 limitations and social isolation were not associated with depressive symptoms or stress. Qualitative results confirmed quantitative results (e.g., loneliness, increased burden) and revealed other aspects of the psychosocial context of pandemic caregivers including both negative (e.g., worry, decline in care partner health) and positive (e.g., increased time with care partner) factors (Table 1).ConclusionWe found that loneliness and care burden contributed to the psychological distress of rural caregivers of PLWD during the COVID‐19 pandemic, and identified other contextual factors of their experiences. The pandemic exacerbated existing vulnerabilities and exposed new ones. Rural caregivers should receive increased support to address the psychosocial stressors and burdens endured during the current pandemic and future catastrophic events.

Caregivers use of technology delivered intervention: The role of computer proficiency

AbstractBackgroundTechnology delivered interventions are becoming increasingly common as they are considered a cost‐efficient and an effective way to deliver self‐administered education and support to caregivers. These technology‐based interventions have been shown to benefit caregivers by increasing their ability to help cope with caregiver stress. There are also potential challenges associated with technology use such as lack of “meaningful access” to technology systems for some segments of the population (e.g., older adults, individuals of lower socio‐economic status) and usability problems. The purpose of this study is to explore the role of caregiver characteristics and competencies when evaluating the effectiveness of technology‐based interventions.MethodTime for Living and Caring (TLC) is an on‐line intervention that provides virtual coaching and self‐administered education and resources to caregivers, with the primary goal of helping them schedule and maximize the utility of their respite time. We conducted a pilot test, where Alzheimer’s and related dementia caregivers (n = 159) used the tool for 16 weeks. Our baseline survey of participants employed the Computer Proficiency Questionnaire, or CPQ‐12, to measure various computer proficiencies. This score was then used to investigate differences in overall appraisal of the intervention and self‐reported caregiver outcomes post intervention.ResultOur findings indicate that CPQ does decrease by age (P>|t| = .000), but that the TLC intervention received favorable reviews despite one’s CPQ score. This includes participant’s self‐perceived benefits, willingness to recommend the intervention to others, and their own willingness to use TLC in the future. It is noted that this sample was highly educated and proficient with technology. This is part selection, given the nature of the study and recruitment strategies. However, these findings also challenge the narrative that older adults are less capable or willing to use on‐line resources.ConclusionOverall, computer proficiency was lower among older participants as expected, but computer proficiency was not associated with the evaluation of the intervention or the benefits to caregiver well‐being. Using a design process that focuses on universal design principals, and considers the needs and characteristics of the target population, appears to increase accessibility and usability of technology delivered intervention for caregiver support.

The effect of structured education and phone follow-up on moderate stage Alzheimer's disease caregiving: Outcomes for patient and caregivers.

To determine the effectiveness of a caregiver education (needs tailored) and telephone follow-up intervention for caregivers of people with moderate stage Alzheimer's disease on caregiver burden, caregiving impact on life, and patients' neuropsychiatric symptoms, dependence on activities of daily living. This quasi-experimental study sampled caregivers of people with moderate stage Alzheimer's. Caregivers in the intervention group received education and telephone follow-up over 12 weeks, while the control group received routine care. Caregivers were assessed for burden, changes in life, and patients for neuropsychiatric symptoms, and dependence on daily living activities. The caregiver burden, life changes, distress, and patients' neuropsychiatric symptom scores showed apparent trend toward betterment, but no statistically significant differences were found in study outcomes between the two groups (P > .05). The caregiver need-based, structured education and telephone follow-up intervention was not empirically effective. With the promising effect from this study, managing behavioral symptoms with need-based, structured, and skill-oriented training has the potential to alleviate the burden on caregivers.

Effectiveness of Dyadic Psychoeducational Intervention on Cancer Patients and Their Caregivers: A Systematic Review and Meta-analysis.

Dyadic psychoeducational intervention targets the dyads of cancer patients and caregivers as active participants in partnership, which can potentially address the needs and challenges faced by patients with cancer and their caregivers. However, there is insufficient evidence on the effectiveness of the intervention on psychological health and illness-related outcomes among the dyads. To systematically examine the dyadic psychoeducational intervention of cancer patients and their caregivers on psychological health and illness-related outcomes. Cochrane Library, EMBASE, CINAHL, PsycINFO, PubMed, Web of Science, and 4 Chinese databases were searched from inception to May 29, 2022. Two investigators independently extracted data and evaluated methodological quality. RevMan 5.4 was used for meta-analysis; heterogeneity was evaluated using Higgins' I2 (%). Standardized mean difference (SMD) with a 95% confidence interval (CI) was used to assess the effects. Eight randomized controlled trials that involved 1234 dyads were collected. Meta-analysis showed that the intervention was effective in reducing the dyadic depression (patients' SMD, -0.41 [95% CI, -0.78 to -0.04; P = .03]; caregivers' SMD, -0.70 [95% CI, -1.31 to -0.09; P = .03]). It also improved caregivers' quality of life (SMD, -0.29 [95% CI, -0.56 to -0.03; P = .03]), whereas no significant effect was found on patients' quality of life. Dyadic results including anxiety, self-efficacy, disease communication, and appraisals of illness/caregiving were observed. Dyadic psychoeducational intervention reduced the dyadic depression. It also improved caregivers' quality of life. Nurses can apply dyadic psychoeducational intervention in clinical practice. More studies are needed to draw higher-quality conclusions and investigate the effects on psychological health and illness-related outcomes in cancer patients and caregivers.

Autism intervention meta-analysis of early childhood studies (Project AIM): updated systematic review and secondary analysis

ObjectiveTo summarize the breadth and quality of evidence supporting commonly recommended early childhood autism interventions and their estimated effects on developmental outcomes.DesignUpdated systematic review and meta-analysis (autism intervention meta-analysis; Project...

Assessing the feasibility, acceptability, and preliminary efficacy of a novel symptom management care delivery intervention for caregivers receiving home hospice care: The I-HoME protocol.

BackgroundTerminally ill patients experience high symptom burden at the end of life (EoL), even when receiving hospice care. In the U.S., family caregivers play a critical role in managing symptoms experienced by patients receiving home hospice services. Yet, most caregivers don't receive sufficient support or formal training in symptom management. Therefore, providing additional visits and education to caregivers could potentially improve outcomes for both patient and caregiver. In response, we developed the Improving Home hospice Management of End-of-life issues through technology (I-HoME) intervention, a program designed for family caregivers of home hospice patients. This paper describes the intervention, study design, and protocol used to evaluate the intervention. MethodsThe I-HoME study is a pilot randomized controlled trial aimed at reducing patient symptom burden through weekly tele-visits and education videos to benefit the patient's family caregiver. One hundred caregivers will be randomized to hospice care with (n = 50) or without (n = 50) the I-HoME intervention. Primary outcomes include intervention feasibility (e.g., accrual, attrition, use of the intervention) and acceptability (e.g., caregivers' comfort accessing the tele-visits and satisfaction). We will also examine preliminary efficacy using validated patient symptom burden and caregiver outcome measures (i.e., burden, depression, anxiety, satisfaction). ConclusionThe trial is evaluating a novel symptom management intervention that supports caregivers of patients receiving home hospice services. The intervention employs a multi-pronged approach that provides needed services at a time when close contact and support is crucial. This research could lead to advances in how care gets delivered in the home hospice setting.

What Is Helpful and What Is Challenging for the Caregivers of Young People Receiving Interventions to Prevent Suicide? Caregivers' Perspectives-A Rapid Scoping Review.

(1) Background: Suicide is a leading cause of death among young people. Preventing suicide in young people is a priority. Caregivers play a vital role in ensuring interventions for young people experiencing suicide ideation and/or attempts are implemented, and that they are maintained over time. Despite this, little is known about what caregivers find helpful and challenging in relation to suicide prevention interventions. This rapid scoping review is the first to address this gap. (2) Methods: Searches were completed on six electronic databases using keywords relating to 'suicide prevention, 'young people', and 'caregivers'. Ten studies-using both qualitative and quantitative methods, and involving >1400 carers from the United States and Europe-were selected for inclusion. (3) Results: The review shows that caregivers value interventions that are delivered by non-judgmental clinicians, that are suitable to the particular needs of their child, that are available when needed, and that support their confidence and communication. Caregivers experience difficulties with interventions that require their attendance at specific times, and that fail to recognize and/or address their own mental health needs. (4) Conclusions: The findings can be used to inform and improve the intervention design, with the aim of improving outcomes for caregivers and young people.

QOL-27. EXPLORING DYADIC CHANGES IN ANXIETY AND DEPRESSION SYMPTOMS FOR PRIMARY BRAIN TUMOR PATIENTS AND THEIR FAMILY CAREGIVERS

Abstract A primary brain tumor (PBT) diagnosis impacts not only the diagnosed person but their family caregivers. Prior research has established that the psychosocial outcomes (i.e., fear of cancer recurrence, quality of life) of individuals with a PBT and their caregivers are interrelated. Actor-partner interdependence modeling (APIM) can account for this interdependence and be used to assess for dyadic changes over time or different variables. The purpose of the present study was to assess longitudinal dyadic changes in anxiety and depressive symptoms for PBT patients and their caregivers. 38 PBT patient/caregiver dyads completed assessments of anxiety and depressive symptoms during routine oncology clinic visits. All dyads completed at least two assessments, at least 8-weeks apart utilizing the PROMIS anxiety and depression short forms. APIM analyses via mixed linear modeling revealed significant actor effects for both depression and anxiety symptoms (i.e., how the same person’s scores are related from baseline to follow-up) but non-significant partner effects (i.e., how one person’s score at the first timepoint is related to the other person’s score at the second timepoint). Specifically, a one-point increase in T-score at the first timepoint was associated with the same person having a 0.58 increase in their PROMIS depression T-score and 0.50 increase in their PROMIS anxiety T-score, respectively, at the second timepoint (p < .001). There were no significant partner effects detected for depression (p = .168) or anxiety (p = .998). Despite the lack of significant relationship between patient and caregiver outcomes in these results (possibly influenced by small sample size), it is notable that, overall, there was an increase in psychological distress over time for both depression and anxiety symptoms for both patients and caregivers. Thus, future research should continue to focus on how to reduce distress and ensure that both patients and caregivers are supported throughout the disease trajectory.

Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial.

Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS. From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention. A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (P = .037) and the stress subscale score (P = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores. Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.

"At the End I Have a Say": Engaging the Chinese Community in Advance Care Planning.

Despite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP. Assess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events. A Chinese Community Committee (N=19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4=most ready); and assessed event acceptability. A total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events. Community-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.

Engaging patient-family dyads to inform the development of a digital health intervention to support cancer caregivers.

221 Background: Shifts in cancer care from hospital to home have increased the burden on family caregivers of individuals with cancer. Cancer caregiving is demanding and associated with declines in caregivers’ physical and psychological well-being. Digital health interventions may improve caregiver well-being by supporting them to monitor patient symptoms, access social support, and communicate with patients’ care team members. Despite benefits to quality care, few digital health interventions have been developed or implemented to support cancer caregivers. The purpose of this study was to develop a web-based intervention (myCare2) focused on supporting caregivers and caregiver well-being. Methods: This multi-method study followed a user-centered design. Participants were recruited from two clinics within one NCI-designated cancer center. We conducted three focus groups with patients with hematologic or gastrointestinal cancers and their caregivers to identify needs and preferences and guide intervention development. Next, we developed a wireframe prototype of myCare2. We iteratively refined the prototype in response to feedback obtained in cognitive interviews with patient-caregiver dyads. Lastly, we built a functioning web-based prototype and conducted user tests with dyads. Focus groups, cognitive interviews, and user tests were audio recorded, transcribed, and analyzed using conventional content analysis. Results: Eight dyads participated in three focus groups. Caregivers reported feeling unprepared and viewed themselves as “head of logistics” for the patient. Caregivers expressed the desire for a tool to help them organize caregiver responsibilities, including medication management, daily schedules and appointments, symptom monitoring, nursing and medical tasks, self-care, and communication with clinicians and support networks. In cognitive interviews, four dyads reviewed and provided positive feedback on the wireframe prototype features that allow the caregiver to schedule tasks; report patient and caregiver concerns; track patient symptoms and medications; ask family and friends for support; share updates with support networks; and find local resources, classes, and events. Five dyads tested myCare2, providing positive and constructive feedback about the intervention layout and functionality. Conclusions: Growing evidence suggests digital health interventions can benefit caregivers managing cancer care at home. The myCare2 intervention is a web-based tool based on caregiver and patient feedback that was found helpful and acceptable. Future research should evaluate the feasibility of myCare2, measure its effects on caregiver and patient outcomes, and identify optimal implementation strategies for use in practice.

Effectiveness of the Stress Process Model-Based Program in Dementia Caregiving (DeCare-SPM) for Family Caregivers: A Study Protocol for a Randomized Controlled Trial.

This paper aims to describe a randomized controlled trial protocol evaluating the effectiveness, cost, and process of a stress process model-based program in dementia caregiving (DeCare-SPM) for family caregivers. Family caregivers of individuals with dementia will be recruited from memory clinics and community settings and randomly assigned to either DeCare-SPM or usual care. DeCare-SPM comprises three face-to-face sessions (ie, problem-based coping, emotion-based coping, meaning-based coping), and a fourth session (ie, social support) including weekly telephone-based consultation for four weeks and then monthly face-to-face boosters. Outcomes will be measured at baseline (T0), and at one (T1), three (T2), and six months (T3). The primary outcome is positive aspects of caregiving and secondary outcomes are caregiving (ie, sense of competence, caregiver burden, social support, anxiety, depression, and quality of life), dementia-related (ie, care dependency, neuropsychiatric symptoms, and quality of life), and stress-related biomarkers of blood and saliva. In addition, process and economic evaluations will be performed. Mixed-effects models will be used to assess intervention effects. Content analysis will be performed on the qualitative data. This paper described the protocol for comprehensive evaluation of the effectiveness, cost, and process of the theory-driven DeCare-SPM to inform how and why interventions work. It highlights the need to reduce challenges and enhance the positive aspects of dementia care. The DeCare-SPM will provide evidence-based insights into how to support and empower family caregivers in their important roles, thereby, leading to improved dementia care.

The care burden of mothers of children with disability: Association between family quality of life and fatigue

AimThis study was performed with the aim of investigating the correlation between care burden, family quality of life and fatigue of mothers of children with disability. Material and methodThe sample for this descriptive study comprised the mothers of 280 children with disabilities accepting participation in the study, meeting the inclusion criteria, and registered in special education and rehabilitation centers in Turkey. Data were collected with the Mother-Child Descriptive Information Form, Bakas Caregiving Outcomes Scale (BCOS), Beach Center Family Quality of Life Scale (BCFQOLS) and Fatigue Severity Scale (FSS). ResultsMothers, mean BCOS scores were 63.29 ± 17.47, mean BCFQOLS scores were 93.74 ± 14.63, and mean FSS scores were 3.84 ± 1.43. There was a statistically significant positive, moderate intensity correlation between the BCOS scores and BCFQOLS scores of mothers (r = 0.404, p < 0.001); a statistically significant negative weak correlation between BCOS scores and FSS scores (r = −0.346,p < 0.001); and a statistically significant negative weak correlation between BCFQOLS scores with FSS scores (r = −0.22,p < 0.001). According to regression analysis, the care burden of mothers was identified to be a significant determinant of family quality of life and fatigue severity (p < 0.05). ConclusionThe results of the study showed that as the care burden of mothers of children with disability increases, family quality of life reduces and fatigue levels increase. Practice implicationsIt is recommended to support the mother in the care process, to plan activities and trainings to reduce the burden and fatigue of care, to increase the quality of family life, and to provide psychological support.

Caring for Dementia Caregivers: Psychosocial Factors Related to Engagement in Self-Care Activities.

Caregivers often prioritize the needs of the care recipient and neglect their own health needs. It is imperative to understand the factors related to their self-care practices and engagement in self-care activities. The present study examined the extent to which dementia caregivers engaged in self-care activities, how this varied depending on caregiver characteristics, and whether self-care engagement mediated the relationship between social support and caregiver outcomes. The study utilized baseline data from a diverse sample of dementia caregivers (N = 243) who participated in a randomized trial evaluating a psychosocial technology-based caregiver intervention. Results showed that the dementia caregivers engaged in low levels of self-care activities and that their engagement varied based on the caregivers' background characteristics (age, gender, race/ethnicity, relationship to the care recipient, and employment status). Less caregiver involvement (e.g., less ADL/IADL help provided and more caregiver preparedness) and more social support predicted higher self-care activity engagement. Self-care activity engagement served as a mediator, such that more social support predicted more self-care activities, which, in turn, were associated with more positive perceptions of caregiving and less caregiver burden and depression. The findings suggest a need for interventions that promote self-care engagement among dementia caregivers and underscore the importance of social support and caregiver preparedness to caregivers' well-being.

Interaction Model of Client Health Behavior for Informal Caregivers: A Theoretical Analysis.

Background: Reliance on informal caregivers is expected to increase, yet there are not many studies examining their characteristics and behaviors. Purpose: The aim of this review is to relate the interaction model of client health behavior (IMCHB) to informal caregiver outcomes. Methods: The literature associated with the IMCHB was examined for current usage to determine use in guiding theories related to informal caregiver outcomes. Cumulative Index to Nursing and Allied Health Literature, Cochrane, EBSCO, Google Scholar, Journals@Ovid, Medical Literature Analysis and Retrieval System Online, and ScienceDirect databases were searched for peer-reviewed literature. Walker and Avant's method guided this theoretical analysis. Results: Seven articles were retained for discussion in this theoretical analysis. Implications: The IMCHB has been used in past health promotion research and can guide future nursing research that supports interventions for informal caregivers. The model's inclusion of the client-professional interaction component allows for further caregiver behavioral associations and relationships that influence optimal outcomes.

A Review of Creative Play Interventions to Improve Children's Hospital Experience and Wellbeing.

Being in the hospital can be stressful for children and caregivers. Evidence-based play interventions to reduce this stress, such as play therapy or Child Life services, have been introduced in hospitals globally, with growing awareness of potential benefits. To evaluate the impact of nonmedical/illness-specific creative or play-based programs in hospital settings on children's (<18 years) and their caregivers' hospital experiences, wellbeing, and other health outcomes. PubMed, CINAHL, Google Scholar. We conducted a systematic review of original articles published since 2011, screening 2701 de-duplicated articles. We identified 25 eligible articles, representing 1629 children (57% male), 422 caregivers, and 128 health professionals. Included studies most commonly evaluated professional children's entertainers (n = 8 studies), music therapy (n = 4), unstructured play (n = 3), and humanoid/animal robots (n = 3). Most studies evaluated the impact on the child's level of anxiety (n = 14/25), mostly supporting a reduction (n = 13/14 studies). Several studies provided evidence for a reduction in children's pain (n = 4/6), and negative emotional/behavioral outcomes (eg, sadness, anger, irritability; n = 5/6 studies). There was mixed evidence for the impact of the included interventions on physiologic outcomes (eg, systolic pressure, heart frequency; n = 3/5 studies) and fatigue (n = 1/2 studies). Evidence on caregiver outcomes and the impact on health care services was limited. The findings of our review generally supported the value of play-based interventions on children's' wellbeing while in the hospital, particularly reducing anxiety and pain. Further evaluation of their impact on caregivers' outcomes and the health care system is needed.

Mindfulness-Based App to Reduce Stress in Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Single-Blind Feasibility Proof-of-Concept Randomized Controlled Trial.

Informal caregivers (ie, individuals who provide assistance to a known person with health or functional needs, often unpaid) experience high levels of stress. Caregiver stress is associated with negative outcomes for both caregivers and care recipients. Mindfulness-based interventions (MBIs) show promise for improving stress, emotional distress, and sleep disturbance in caregivers of persons with Alzheimer disease and related dementias (ADRD). Commercially available mobile mindfulness apps can deliver MBIs to caregivers of persons with ADRD in a feasible and cost-effective manner. We are conducting a single-blind feasibility proof-of-concept randomized controlled trial (RCT; National Institutes of Health [NIH] stage 1B) comparing 2 free mobile apps: the active intervention Healthy Minds Program (HMP) with within-app text tailored for addressing stress among caregivers of persons with ADRD, versus Wellness App (WA), a time- and dose-matched educational control also tailored for caregivers of persons with ADRD. We aim to recruit 80 geographically diverse and stressed caregivers of persons with ADRD. Interested caregivers use a link or QR code on a recruitment flyer to complete a web-based eligibility screener. Research assistants conduct enrollment phone calls, during which participants provide informed consent digitally. After participants complete baseline surveys, we randomize them to the mindfulness-based intervention (HMP) or educational control podcast app (WA) and instruct them to listen to prescribed content for 10 minutes per day (70 minutes per week) for 12 weeks. Caregivers are blinded to intervention versus control. The study team checks adherence weekly and contacts participants to promote adherence as needed. Participants complete web-based self-report measures at baseline, posttest, and follow-up; weekly process measures are also completed. Primary outcomes are a priori set feasibility benchmarks. Secondary outcomes are stress, emotional distress, sleep disturbance, caregiver burden, mindfulness, awareness, connection, insight, and purpose. We will calculate 1-sided 95% CI to assess feasibility benchmarks. Effect sizes of change in outcomes will be used to examine the proof of concept. Recruitment started on February 20, 2023. We have enrolled 27 caregivers (HMP: n=14; WA: n=13) as of June 2023. Funding began in August 2022, and we plan to finish enrollment by December 2023. Data analysis is expected to begin in May 2024 when all follow-ups are complete; publication of findings will follow. Through this trial, we aim to establish feasibility benchmarks for HMP and WA, as well as establish a proof of concept that HMP improves stress (primary quantitative outcome), emotional distress, sleep, and mindfulness more than WA. Results will inform a future efficacy trial (NIH stage II). HMP has the potential to be a cost-effective solution to reduce stress in caregivers of persons with ADRD, benefiting caregiver health and quality of care as well as patient care. ClinicalTrials.gov NCT05732038; https://clinicaltrials.gov/study/NCT05732038. DERR1-10.2196/50108.

Health outcomes in caregivers of service members and veterans with traumatic brain injury enrolled in the U.S. Veterans Affairs Caregiver Support Program.

To explore health outcomes in caregivers of service members and veterans (SMV) with traumatic brain injury (TBI) enrolled in two programs within the U.S. Department of Veterans Affairs (VA) Caregiver Support Program (CSP) (General and Comprehensive Programs) and those not enrolled. Participants were 290 caregivers classified into three groups: (a) General Program (n = 34); (b) Comprehensive Program (n = 104); and (c) Not Enrolled (n = 152). Main outcome measures assessed caregiver health-related quality of life (HRQOL), SMV functional ability, and caregiver needs. Compared to the Not Enrolled group, the General, and Comprehensive Program groups reported worse scores on five of 25 caregiver HRQOL measures and had a higher proportion of elevated scores on two measures. The Comprehensive Program group reported worse scores on an additional seven HRQOL measures and a higher proportion of elevated scores on three measures compared to the Not Enrolled group. Over 20% of caregivers in each group reported clinically elevated scores on eight HRQOL measures. Few differences between caregiver groups were identified for unmet needs. In the total sample, eight HRQOL measures consistently emerged that were more strongly associated with caregiver needs. Caregivers enrolled in the VA CSP tended to report worse HRQOL and caring for a SMV with worse functional ability compared to those not enrolled. A better understanding of health care utilization for those not enrolled in the CSP and in need of help is required. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Supplemental Material for Health Outcomes in Caregivers of Service Members and Veterans With Traumatic Brain Injury Enrolled in the U.S. Veterans Affairs Caregiver Support Program

Supplemental Material for Health Outcomes in Caregivers of Service Members and Veterans With Traumatic Brain Injury Enrolled in the U.S. Veterans Affairs Caregiver Support Program

Using Academic Detailing to Enhance the Knowledge, Skills, and Attitudes of Clinicians Caring for Persons with Behavioral and Psychological Symptoms of Dementia

Behavioral and psychological symptoms of dementia (BPSD) are highly prevalent in long-term care settings. We sought to enhance the knowledge, skills, and attitudes of primary care clinicians caring for patients with BPSD through academic detailing, an evidence-based approach for persuading health care professionals to make changes in their practice. We implemented academic detailing among physicians and nurse practitioners in 2 primary care settings, one an urban center serving a largely Black community and another a rural center serving a largely white community, within primary care–integrated dementia diagnostic clinics. Each of the 11 academic detailing visits included didactic content, case discussion, and patient consultation. Outcome measures included assessments of clinicians’ knowledge, confidence, and acceptability of the intervention. Of 15 providers who participated at baseline, 13 participated in 1 or more academic detailing visits in the next 18 months, 12 completed a 6-month assessment, and 7 completed an 18-month assessment. Knowledge and attitudes about BPSD increased during the program, and there was high satisfaction with the program. Academic detailing thus is a feasible way of improving self-reported knowledge, skills, and attitudes of primary care clinicians caring for patients with BPSD. We plan to scale up the intervention to assess the impact on patient and caregiver outcomes.