Caregiver Outcomes Research Articles

The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

Virtual Family-Centered Rounds in the Neonatal Intensive Care Unit: A Randomized Controlled Pilot Trial.

To measure the feasibility, reach, and potential impact of a virtual family-centered rounds (FCR) intervention in the neonatal intensive care unit. We conducted a randomized controlled pilot trial with a 2:1 intervention-to-control arm allocation ratio. Caregivers of intervention arm neonates were invited to participate in virtual FCR plus standard of care. We specified 5 feasibility objectives. We profiled intervention usage by neonatal and maternal characteristics. Exploratory outcomes included FCR caregiver attendance, length of stay, breast milk feeding at discharge, caregiver experience, and medical errors. We performed descriptive analyses to calculate proportions, means, and rates with 95% confidence intervals (CI). We included 74 intervention and 36 control subjects. Three of the five feasibility objectives were met based on the point estimates. The recruitment and intervention uptake objectives were not achieved. Among intervention arm subjects, recruitment of a caregiver occurred for 47 (63.5%, 95% CI 51.5%-74.4%) neonates. Caregiver use of the intervention occurred for 36 (48.6%, 95% CI 36.8%-60.6%) neonates in the intervention arm. Feasibility objectives assessing technical issues, burden, and data collection were achieved. Among the attempted virtual encounters, 95.0% (95% CI 91.5%-97.3%) had no technical issues. The survey response rate was 87.5% (95% CI 78.2%-93.8%). Intervention arm neonates had 3.36 (95% CI 2.66%-4.23) times the FCR caregiver attendance rate of subjects in the control arm. A randomized trial to compare virtual FCR to standard of care in neonatal subjects is feasible and has potential to improve patient and caregiver outcomes.

Burden and Depression among Jordanian Caregivers of Hemodialysis Patients: A Cross-sectional Study

Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units.

Caring for Caregivers: Bridging the Gap Between Family Caregiving Policy and Practice

Summary Nearly 20% of adults in the United States provide unpaid care for an adult with significant health or functional needs. The involvement of a family member in home-based care is associated with improved patient health outcomes and lower rates of health care utilization, but also high caregiver stress. Recent policy changes have signaled the readiness for more timely and sustainable caregiver support. Yet, in spite of new policies and payment mechanisms, the adoption of family caregiver support has been limited. In this article, the authors present the clinical and business case for Medicare Advantage plans to support family caregivers through a cost-saving and actionable care model that leverages evidence-based practices, human-centered design, and scalable technology. This model offers interventions that Medicare Advantage plans, and health care systems serving Medicare Advantage populations, can choose from to improve caregiver and patient outcomes, enhance their members’ experience of care, and reduce health care spending.

Do caregivers who connect online have better outcomes? A systematic review of online peer-support interventions for caregivers of people with stroke, dementia, traumatic brain injury, Parkinson’s disease and multiple sclerosis

AbstractBackground and Objectives:This systematic review aimed to identify and appraise the evidence for online peer-support interventions for caregivers of stroke survivors (with and without aphasia), and people with dementia, traumatic brain injury (TBI), Parkinson’s disease and multiple sclerosis.Research Design and Methods:Systematic review conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases were systematically searched up until September 2020: EMBASE, PubMed, CINAHL, Scopus and Web of Science. Two reviewers independently screened titles, abstracts and full-text articles. The methodological quality of included studies was assessed using Physiotherapy Evidence Database (PEDro) and Mixed-Methods Appraisal Tool (MMAT) scales. Interventions were described using the Template for Intervention Description and Replication (TIDieR) checklist.Results:A total of 3026 records were identified from database searches. Following screening, 18 studies reporting 17 interventions were included in this review. Most studies (n = 13) reported interventions for caregivers of people with dementia. All studies incorporated an element of peer support as part of the intervention, however, most interventions (n = 15) comprised both psychosocial and educational elements. Statistically significant changes were reported for 11 interventions in one or more of the following domains: caregiver knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness and perceived support. Qualitative outcomes included perceived reductions in stress and increased emotional and informational support.Discussion and Implications:Positive changes in caregiver outcomes were identified in response to multi-component online interventions (i.e., peer support in addition to education). Peer support was often poorly described, limiting the conclusions that could be drawn about the intervention components which result in better outcomes. Online interventions may provide an accessible and effective means of supporting caregivers.

Comparing Traditional and Ebook-Augmented Parent-Child Interaction Therapy (PCIT): A Randomized Control Trial of Pocket PCIT

Disruptive behavior in young children is one of the most common referrals to behavioral health providers. While numerous effective parenting programs, such as parent–child interaction therapy (PCIT), exist for improving children’s behaviors, challenges with treatment engagement and retention limit the intended positive impact on child and caregiver outcomes, particularly for racial and ethnic minority families. In an effort to address barriers contributing to poor engagement and retention in traditional PCIT service delivery and among ethnic and racial minority families, a multimedia PCIT ebook was developed and evaluated. In a sample of the general public that utilized the ebook, users were found to be more engaged in viewing embedded videos within the ebook that were related to expert skill explanations and skill demonstrations than caregiver testimonies. A randomized controlled trial was also conducted to evaluate the extent that the ebook + PCIT improved treatment engagement, retention, parenting skills, skill acquisition efficiency, and child behavior above and beyond traditional PCIT. Participating families were randomly assigned to either the traditional PCIT (n = 71) or ebook + PCIT (n = 107) group using an online random number generator. Forty-nine caregivers (traditional PCIT n = 24, ebook + PCIT n = 25) were excluded from analyses because they were lost to follow-up during the intervention. Families in both the traditional PCIT and ebook + PCIT groups demonstrated generally equivalent positive outcomes in treatment engagement (i.e., attendance, treatment length, completion rate) and caregiver skill acquisition efficiency at midtreatment, posttreatment, and 3-month follow-up. The addition of the ebook to PCIT also reduced child disruptive behavior at midtreatment, above and beyond traditional PCIT, but not at posttreatment or follow-up. Clinical implications and future directions are discussed.

Spirituality-Integrated Interventions for Caregivers of Patients with Terminal Illness: A Systematic Review of Quantitative Outcomes.

This systematic review of published quantitative research was conducted to explore the effects of spirituality-integrated interventions for informal caregivers of terminally ill patients. Multiple databases were searched for articles published between January 2004 and November 2019. Twelve randomized controlled trials were identified. Methodological quality was assessed usingthe revised Cochrane Collaboration's tool for assessing risk of bias. Studies were notably diverse in terms of spiritual background, intervention design, technology used, and outcomes measures. Spirituality-integrated interventions were found to show positive outcomes for caregivers. However, methodological flaws negatively affected the quality of most studies, warranting further and rigorous research into the topic.

Adaptação transcultural da Bakas Caregiving Outcome Scale para o Português do Brasil

Resumo Objetivo: Realizar a validação semântica e de conteúdo da Bakas Caregiving Outcome Scale para o português do Brasil. Métodos: Trata-se de um estudo metodológico, em que se realizou a adaptação transcultural segundo recomendações internacionais, a validação de conteúdo por meio de um comitê de juízes. Após essas etapas, o instrumento foi aplicado em 151 cuidadores informais de pessoas com sequela de acidente vascular encefálico, cadastrados em Unidades de Saúde da Família de João Pessoa, entre os meses de setembro [...]

Food Allergy Symptom Self-Management With Technology (FASST) mHealth Intervention to Address Psychosocial Outcomes in Caregivers of Children With Newly Diagnosed Food Allergy: Protocol for a Pilot Randomized Controlled Trial.

BackgroundApproximately 2.4 million children in the United States suffer from food-induced anaphylaxis, a condition that is annually responsible for over 200 deaths and 200,000 emergency room visits. As a result, caregivers of children newly diagnosed with severe and life-threatening food allergic reactions experience clinically significant symptoms of psychological distress, including fatigue, anxiety, depressed mood, social isolation, and substantially reduced quality of life. Despite this recognition, there is a lack of caregiver-centered self-management interventions to address these concerns.ObjectiveIn this protocol, we propose to develop and conduct feasibility testing of a technology-enhanced, self-management, mobile health, smartphone app intervention called Food Allergy Symptom Self-Management with Technology for Caregivers (FASST) designed to meet the psychosocial health needs of caregivers of children with a new diagnosis of food allergy.MethodsThis pilot study uses qualitative work (Phase I) to inform a 4-week longitudinal randomized controlled trial (Phase II). In Phase I, 10 caregivers of children (≤18 years old) with established food allergy (≥1 year from diagnosis) will participate in semistructured interviews to inform the development of the FASST app. In Phase II, 30 caregivers of children (≤18 years old) with a newly diagnosed food allergy (≤90 days from diagnosis) will be randomized 2:1 to receive the FASST intervention (n=20) or control condition (basic app with educational resources; n=10). Process measures include feasibility, caregiver acceptability, adherence, and satisfaction. Outcome measures include caregiver fatigue, anxiety, depression, sleep, self-efficacy, and quality of life measured at baseline, week 4, and 3 months post study completion.ResultsPhase I study activities have been completed, and Phase II participant enrollment into the randomized controlled trial is expected to commence in 2021.ConclusionsWith limited readily available resources at their disposal, the results from this study have the potential to provide caregivers of children with a newly diagnosed food allergy a tool to help them self-manage and mitigate negative psychosocial factors during a critical time period in the caregiving/condition trajectory.Trial RegistrationClinicalTrials.gov Identifier NCT04512924: https://clinicaltrials.gov/ct2/show/NCT04512924International Registered Report Identifier (IRRID)DERR1-10.2196/25805

The Impact of Peer Support Group Programs on Psychosocial Outcomes for Burn Survivors and Caregivers: A Review of the Literature.

Peer support group programs are often recommended for burn survivors as a way to facilitate their psychosocial recovery and reintegration into the community. Such programs provide opportunities for burn patients and their caretakers to access emotional and informational support from healthcare providers and other survivors in inpatient or outpatient settings. Despite their popularity, however, there is little information currently available on the efficacy of these groups. In response, we reviewed the existing literature on peer support group programs and their impacts on psychosocial outcomes for burn survivors and their caregivers. A systematic review of the literature utilizing PubMed, PsycINFO, and Medline databases was conducted for articles published between 1990 and 2018. Twenty-five articles including inpatient, outpatient, integrative peer support groups, and burn camps met our inclusion criteria. All inpatient peer support group program articles (n = 4) reported associations with psychosocial improvements. Integrative peer support group program articles (n = 2) reported associations with social integration and reduction in post-traumatic stress and anxiety. All outpatient peer support group program articles (n = 8) demonstrated associations with psychosocial outcomes involving life satisfaction, acceptance of self, and reduced levels of isolation. Findings were less consistent for burn camps: eight articles suggested improvements in psychological outcomes while three articles reported no significant psychosocial effects. Although these results are encouraging, further study is indicated both to replicate these findings, and to determine the optimal implementation of inpatient and outpatient peer support programs.

Assistive technology and telecare to maintain independent living at home for people with dementia: the ATTILA RCT.

Assistive technology and telecare have been promoted to manage the risks associated with independent living for people with dementia, but there is limited evidence of their effectiveness. This trial aimed to establish whether or not assistive technology and telecare assessments and interventions extend the time that people with dementia can continue to live independently at home and whether or not they are cost-effective. Caregiver burden, the quality of life of caregivers and of people with dementia and whether or not assistive technology and telecare reduce safety risks were also investigated. This was a pragmatic, randomised controlled trial. Blinding was not undertaken as it was not feasible to do so. All consenting participants were included in an intention-to-treat analysis. This trial was set in 12 councils in England with adult social services responsibilities. Participants were people with dementia living in the community who had an identified need that might benefit from assistive technology and telecare. Participants were randomly assigned to receive either assistive technology and telecare recommended by a health or social care professional to meet their assessed needs (a full assistive technology and telecare package) or a pendant alarm, non-monitored smoke and carbon monoxide detectors and a key safe (a basic assistive technology and telecare package). The primary outcomes were time to admission to care and cost-effectiveness. Secondary outcomes assessed caregivers using the 10-item Center for Epidemiological Studies Depression Scale, the State-Trait Anxiety Inventory 6-item scale and the Zarit Burden Interview. Of 495 participants, 248 were randomised to receive full assistive technology and telecare and 247 received the limited control. Comparing the assistive technology and telecare group with the control group, the hazard ratio for institutionalisation was 0.76 (95% confidence interval 0.58 to 1.01; p = 0.054). After adjusting for an imbalance in the baseline activities of daily living score between trial arms, the hazard ratio was 0.84 (95% confidence interval 0.63 to 1.12; p = 0.20). At 104 weeks, there were no significant differences between groups in health and social care resource use costs (intervention group - control group difference: mean -£909, 95% confidence interval -£5336 to £3345) or in societal costs (intervention group - control group difference: mean -£3545; 95% confidence interval -£13,914 to £6581). At 104 weeks, based on quality-adjusted life-years derived from the participant-rated EuroQol-5 Dimensions questionnaire, the intervention group had 0.105 (95% confidence interval -0.204 to -0.007) fewer quality-adjusted life-years than the control group. The number of quality-adjusted life-years derived from the proxy-rated EuroQol-5 Dimensions questionnaire did not differ between groups. Caregiver outcomes did not differ between groups over 24 weeks. Compliance with the assigned trial arm was variable, as was the quality of assistive technology and telecare needs assessments. Attrition from assessments led to data loss additional to that attributable to care home admission and censoring events. A full package of assistive technology and telecare did not increase the length of time that participants with dementia remained in the community, and nor did it decrease caregiver burden, depression or anxiety, relative to a basic package of assistive technology and telecare. Use of the full assistive technology and telecare package did not increase participants' health and social care or societal costs. Quality-adjusted life-years based on participants' EuroQol-5 Dimensions questionnaire responses were reduced in the intervention group compared with the control group; groups did not differ in the number of quality-adjusted life-years based on the proxy-rated EuroQol-5 Dimensions questionnaire. Future work could examine whether or not improved assessment that is more personalised to an individual is beneficial. Current Controlled Trials ISRCTN86537017. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 19. See the NIHR Journals Library website for further project information.

Abstract P211: Stroke Recovery Navigator to Improve Post Stroke Recovery

Social support impacts recovery after stroke. Patient centered navigation programs provide social support and have shown benefit with other patient populations. The purpose of this study is to determine if there is a difference in outcomes for stroke survivors and caregivers who receive navigation services post-discharge. The study used a multi-center quasi-experimental before-after design to examine the impact of a telephone-based stroke navigation. Selected recruitment sites were nine facilities without navigation programs. Facilities provided information to survivors and caregivers about Stroke Recovery Navigator (SRN) prior to discharge and made referrals to the program. Participants were randomized into control and intervention groups using a computer-generated coin flip. Navigators completed telephone assessments within a week of referral. Navigators received the following trainings: Patient Navigation Fundamentals, motivational interviewing, and mental health first aid. The Reintegration to Normal Living (RNLI) scale was completed by all survivors and the Zarit Caregiver Burden scale was completed by all caregivers. The control group completed the initial and final assessments using these tools. In addition to these assessments, the intervention group received an individualized navigation plan and weekly contact by the SRN. The study randomized 301 individuals (82 caregivers, 219 survivors), with completion rate of 32%. Caregiver demographic characteristics and baseline caregiver burden scores were not statistically significant. Caregiver burden in the intervention group were lower compared to the control group, but not statistically significant (p=0.25). Demographic characteristics for survivors were similar between groups. RNLI score for survivors was slightly higher for the intervention group (p<0.10). To achieve statistical significance additional participants were needed. In conclusion differences in quality of life for survivors and caregivers were not statistically significant between the groups. Additional information on the benefits of an SRN program is needed to support its implementation. However, important lessons were learned to improve such program and its design.

Caregiver outcomes of a dementia care program

The University of California, Los Angeles Alzheimer's and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs’ behavioral and depressive symptoms improved. In addition, at one-year, overall caregiver depression, strain, and distress related to behavioral symptoms also improved. However, not all dyads enrolled in the ADC program showed improvement in these outcomes. We conducted a mixed qualitative-quantitative study to explore why some participants did not benefit and what could be changed in this and other similar dementia management programs to increase the percentage who benefit. Semi-structured interviews (N=12) or surveys (N=41) were completed with 53 caregivers by telephone, mail and online. Seven areas for potential program improvement were identified from the first 12 interviews. These included: recommendations that did not match caregivers’ perceived care needs, barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, behavioral recommendations that the caregiver felt did not work, and poor rapport of the dementia expert with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers (85%) reported that the program was very beneficial or extremely beneficial. Respondents identified the close, longitudinal relationship and access to a dementia care expert as particularly beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program.

The Association of Spirituality with Anxiety and Depression in Stroke Survivor-Caregiver Dyads: An Actor-Partner Interdependence Model.

Although several authors have analyzed the effects of spirituality on stroke survivors' physical functioning and on their own caregiver's outcomes, such as quality of life, only few authors have explored the interaction between spirituality and anxiety and depression using a dyadic approach. The aim of this study was to analyze the influence of spirituality in the stroke survivor-caregiver dyad and specifically on anxiety and depression in both parties. A total of 217 stroke survivor-caregiver dyads were enrolled at discharge from several rehabilitation hospitals in central and southern Italy. The actor-partner interdependence model was used to analyze the dyadic data. To verify the differences in the effects between survivors and caregivers, comparisons were made between the χ2 values of the model in which actor and partner effects were constrained to be equal. The average age of stroke survivors and their caregivers at baseline was 71.2 and 52.7 years, respectively. Among the stroke survivors, there were slightly more men than women, whereas 65% of the caregivers were women. Most stroke survivors had had an ischemic stroke. Four statistically significant actor effects were identified. Higher survivors' and caregivers' spirituality was associated with higher survivor and caregiver anxiety. The only significant partner effect that was identified was the association between stroke survivor spirituality and caregiver depression. This study highlights the importance of studying spirituality in the population with stroke. Spirituality seems to play an important protective role in both stroke survivors' and caregivers' depression but not in anxiety.

Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled ‘Caring Ahead’ to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the ‘Caring Ahead’ preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers’ feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

A systematic review of clozapine's effectiveness for primary psychotic and bipolar disorders in older adults.

The primary aim was to systematically review the literature regarding the effectiveness of clozapine in reducing symptoms of primary psychotic and bipolar disorders in older adults. The secondary aim was to describe other reported patient and caregiver outcomes of clozapine treatment in older adults. MEDLINE, Embase, PsychINFO, ProQuest, and PubMed databases were searched according to PRISMA guidelines for original empirical research examining the effectiveness of clozapine in adults aged 65 years or more with primary psychotic and bipolar disorders. Identified studies were assessed for methodological quality using the QualSyst tool. 1121 records were screened, of which 7 studies met the inclusion criteria. In total, 128 subjects participated in the included studies (111 of whom were from a single study), with an age range of 65-86 years, and diagnoses including schizophrenia, schizoaffective disorder, bipolar disorder, and delusional disorder. Indications for clozapine use included treatment resistance and inability to tolerate other treatments. While six out of seven studies reported some improvement on the primary measure of psychopathology after treatment with clozapine, the group effects were modest and based on low-level evidence. Additional reported outcomes included discharge destination, death, and relapse. Most of the included studies were only of adequate methodological quality, with significant risks of bias identified. Clozapine may have positive effects for primary psychotic and bipolar illnesses in some older adults, but the group effects reported were modest and based on low-level evidence studies with methodological limitations. Based on these findings, clinical decision-making about whether or not to trial clozapine should involve an individualized analysis of potential benefits and risks in collaboration with patients and their families and caregivers.

Rapid, Full-Scale Change to Virtual PCIT During the COVID-19 Pandemic: Implementation and Clinical Implications.

Health agencies call for the immediate mobilization of existing interventions in response to numerous child and family mental health concerns that have arisen as result of the COVID-19 pandemic. Answering this call, this pilot study describes the rapid, full-scale change from a primarily clinic-based Parent–Child Interaction Therapy (PCIT) model to a virtual service model (i.e., I-PCIT) in an academic and community-based program in Miami, Florida. First, we describe the virtual service training model our program developed and its implementation with 17 therapists (MAge = 32.35, 88.2% female, 47.1% Hispanic) to enable our clinic to shift from providing virtual services to a small portion of the families served (29.1%) to all of the families served. Second, we examine the effect of I-PCIT on child and caregiver outcomes during the 2-month stay-at-home period between March 16, 2020, and May 16, 2020, in 86 families (MChildAge = 4.75, 71% Hispanic). Due to the rapid nature of the current study, all active participants were transferred to virtual services, and therefore there was no comparison or control group, and outcomes represent the most recently available scores and not treatment completion. Results reveal that I-PCIT reduced child externalizing and internalizing problems and caregiver stress, and increased parenting skills and child compliance with medium to large effects even in the midst of the COVID-19 pandemic. Finally, the study examined components of our virtual service training model associated with the greatest improvements in child and caregiver outcomes. Preliminary findings revealed that locally and collaboratively developed strategies (e.g., online communities of practice, training videos and guides) had the strongest association with child and caregiver outcomes. Implications for virtual service delivery, implementation, and practice in the midst of the COVID-19 pandemic are discussed.

Comparing Instructional Approaches in Caregiver-Implemented Intervention: An Interdisciplinary Systematic Review and Meta-Analysis

Family involvement is a cornerstone of early intervention (EI). Therefore, positive caregiver outcomes are vital, particularly in caregiver-implemented interventions. As such, caregiver instructional approaches should optimize adult learning. This study investigated the comparative efficacy of coaching and traditional caregiver instruction on caregiver outcomes across EI disciplines. A systematic search for articles was conducted using PRISMA guidelines. Meta-analysis methodology was used to analyze caregiver outcomes, and a robust variance estimate model was used to control for within-study effect size correlations. Seven relevant studies were ultimately included in the analysis. A significant, large effect of coaching on caregiver outcomes was observed compared to other models of instruction ( g = 0.745, SE = 0.125, p = .0013). These results support the adoption of a coaching framework to optimize caregiver outcomes in EI. Future research should examine how coaching and traditional instruction can be used in tiered intervention models with a variety of populations.

The next generation of collaborative care: The design of a novel web-based stepped collaborative care intervention delivered via telemedicine for people diagnosed with cancer

BackgroundThe NIH consensus statement on cancer-related symptoms concluded the most common and debilitating were depression, pain and fatigue [1–6]. Although the comorbidity of these symptoms is well known and may have similar underlying biological mechanisms no intervention has been developed to reduce these symptoms concurrently. The novel web-based stepped collaborative care intervention delivered by telemedicine is the first to be tested in people diagnosed with cancer. MethodsWe plan to test a web-based stepped collaborative care intervention with 450 cancer patients and 200 caregivers in the context of a randomized controlled trial. The primary endpoint is quality of life with other primary outcomes including patient-reported depression, pain, fatigue. Secondary outcomes include patient serum levels of pro-inflammatory cytokines and disease progression. We also will assess informal caregiver stress, depression, and metabolic abnormalities to determine if improvements in patients' symptoms also relate to improvement in caregiver outcomes. ResultsThe trial is ongoing and a total of 382 patients have been randomized. Preliminary analyses of the screening tools used for study entry suggest that Center for Epidemiological Studies-Depression (CESD) scale has good sensitivity and specificity (0.81 and 0.813) whereas the scale used to assess pain (0.47 and 0.91) and fatigue (0.11 and 0.91) had poor sensitivity but excellent specificity. Using the AUROC, the best cut point for the CES-D was 19, for pain was 4.5; and for fatigue was 2.5. Outcomes not originally proposed included health care utilization and healthcare charges. The first 100 patients who have been followed a year post-treatment, and who were less than 75 years and randomized to the web-based stepped collaborative care intervention, had lower rates of complications after surgery [χ2 = 5.45, p = 0.02]. For patients who survived 6 months or less and were randomized to the web-based stepped collaborative care intervention, had lower rates of 90-day readmissions when compared to patients randomized to the screening and referral arm [χ2 = 4.0, p = 0.046]. Patients randomized to the collaborative care intervention arm had lower overall health care activity-based costs of $16,758 per patient per year when compared to the screening and referral arm. DiscussionThis novel web-based stepped stepped collaborative care intervention, delivered via telemedicine, is expected to provide a new strategy to improve the quality of life in those diagnosed with cancer and their caregivers. Trial registrationClinicalTrials.govNCT02939755

The Growing Primary Care Nurse Practitioner Workforce: A Solution for the Aging Population Living With Dementia

Redesigning the healthcare workforce to meet the needs of the growing population of persons living with dementia (PLWD), most of whom reside in the community and receive care from primary care providers, is a national priority. Yet, the shortage of adequately trained providers is raising concerns that the primary care system is not equipped to care for PLWD. The growing nurse practitioner (NP) workforce could bridge this gap. In this review, the authors synthesized the existing evidence from fourteen studies on the utilization of NPs to care for PLWD in primary care. Although the authors found that most NPs were engaged in co-management roles, emerging evidence suggests that NPs also serve as primary care providers for PLWD. Findings describe the impact of NP care on the health system, PLWD, and caregiver outcomes. The authors conclude that the optimal utilization of NPs can increase the capacity of delivering dementia-capable primary care.