Caregiver Outcomes Research Articles

P195: The evolution of a community mental health team in Singapore: Community Psychogeriatric Programme

Mental health issues in the elderly were often overlooked in the past, with mental illness often being underdiagnosed, undiagnosed or misdiagnosed. As such, mental healthcare in the elderly was often insufficient, leading to significant adverse outcomes in individuals and caregivers, as well as an added burden to the healthcare system.The Community Psychogeriatric Programme (CPGP) was set up in Changi General Hospital in 2007 to serve the Eastern Region in Singapore. CPGP comprises of a multidisciplinary team of psychiatrists, psychologists, nurses, medical social workers, occupational therapists, a physiotherapist and administrative executives. The programme objective is to provide community mental health services for early detection and treatment of psychogeriatric disorders and to allow aging-in-place within the community. This is achieved through collaborating with social and healthcare agencies, as well as caregivers, to meet the needs of the elderly to maintain them in the community for as long as possible.Over the past 16 years, the proportion of Singapore’s population aged 65 and above have grown, mental health literacy in Singapore has improved, and community mental healthcare providers have increased. CPGP’s community partnerships multiplied, including social eldercare agencies such as dementia daycare centres, general medical practitioners in Primary Care Clinics and Community Hospitals, and residential facilities such a sheltered homes and nursing homes. The CPGP team pivoted to focus more heavily on networking with community partners, training and upskilling them with knowledge of geriatric mental healthcare and empowering them to provide care and support in the community setting. The goal was to right-site care, promoting early detection and intervention in the community. Home based consultations or nursing home consultations, including telepsychiatry, were reserved for elderly patients who really could not access specialist psychogeriatric outpatient services in the hospital.Looking back on the work CPGP has done, this is a reflection of our journey, reviewing the strategies we have employed to improve community psychogeriatric care, our achievements thus far, and the challenges we have been faced with as the healthcare landscape evolved in Singapore.

Blended web-based Acceptance and Commitment Therapy for Informal Caregivers of people with dementia (ACT-IC study): Result of social health aspects

Objective:Numerous e-health programs have shown the potential to enhance psychological and social health outcomes in informal caregivers of People with Dementia (PwD). However, there is still a need for evidence-based interventions tailored to the specific needs of this population, such as maintaining self-management and participating in meaningful activities. This mixed-methods study aims to evaluate the feasibility, acceptability, and preliminary effectiveness of a blended intervention based on acceptance and commitment therapy for informal caregivers of PwD, leading to a better understanding of intervention refinements for future controlled trials.Method:A single-arm clinical trial design is conducted. A total of 20 informal caregivers of PwD are recruited through memory clinics and social media platforms in the Netherlands. The ACT-IC intervention is delivered over a 9-week period and consists of a collaborative goal-setting session, nine online modules, and nine telephone-based motivational coaching sessions. Feasibility and acceptability are assessed using the attrition rate, adherence to, and engagement with the intervention, the proportion of missing data, and semi-structured interviews. Clinical outcome measures assess depression, anxiety, stress, sense of competence, burden, and self-efficacy at baseline and post-intervention.Results:Data collection will be completed by May 2023, and analyses are ongoing. Of the 20 caregivers, 19 completed the baseline assessment, and 3 dropped out. Results of an ANOVA investigating the effect of ACT-IC on the outcome measures at post-intervention will be reported, as well as the results of post-hoc analyses that explored the effect on outcomes of goal attainment and meaningful activities, observed use of the website, and reported adherence to the recommended frequency of website use.Conclusion:The result will contribute to the need for further research on supportive e-health interventions for informal caregivers of PwD. The ACT-IC study is the first trial to apply an evidence-based blended approach to address and evaluate the specific shared needs of caregivers. The mixed-method approach may offer a better understanding of reasons for dropouts, as well as barriers and facilitators that informal caregivers experience over the course of the intervention. Furthermore, social interaction (telephone-based motivational coaching) might improve the feasibility and acceptability of the online ACT intervention.

Patient‐related benefits of amyloid PET imaging in unclear dementia: rationale and study design of the randomized ENABLE study

AbstractBackgroundDementia detection rate is very low in German primary care, as well as internationally. Amyloid PET imaging can reliably clarify an unclear diagnosis of dementia or an uncertain diagnosis of Alzheimer’s Disease (AD), improving diagnostic confidence and patient management. At present, systematic evidence of such benefits is still lacking. The patient‐related benefits of amyloid PET imaging (ENABLE) study will test whether amyloid PET will have a benefit on patients' functional status. Here, we describe the design of ENABLE, a randomized controlled two‐armed coverage with evidence development study in Germany.MethodApproximately 1,126 patients from 20 German academic memory clinics with a clinical diagnosis of mild‐moderate dementia of unclear etiology or of AD with low diagnostic certainty will be included in the study. Those patients will be randomly assigned to amyloid‐PET or routine diagnostics (no amyloid‐PET) (see Figure). The primary endpoint is change from baseline in the ability to perform instrumental activities of daily living (IADL) at 18 months as measured by the Amsterdam IADL Questionnaire. Secondary endpoints include the change in diagnosis, diagnostic confidence, cognition and clinical outcomes of patients and caregivers up until 24 months. We will apply linear and mixed linear models to assess primary and secondary endpoints.ResultWe expect patients' and caregivers' quality of life to be improved after receiving an amyloid PET formal diagnosis, as this will result into timely pharmacological and non‐pharmacological interventions.ConclusionThis study will benefit physicians’ and payers’ decisions on the provision of health care for patients with dementia in Germany.

Differences in Dementia Caregiver Distress Based on Caregiver Gender and Care Recipient Neuropsychiatric Symptoms

AbstractBackgroundOur healthcare system relies on unpaid family caregivers (e.g., spouses) for care of individuals with Alzheimer’s disease and related dementias (ADRD). Several caregiver and care recipient characteristics are known to be associated with caregiver burden and psychological outcomes in dementia caregivers. Research suggests that caregiver emotional distress is higher among women versus men, and that it increases with elevated care recipient neuropsychiatric symptoms (NPS). However, it is unclear whether gender differences in caregiver distress are independent of care recipient characteristics.MethodCaregivers completed the Neuropsychiatric Inventory‐ Questionnaire (NPI‐Q). Presence of NPS in care recipients was summed across 12 NPI‐Q domains. Using one‐way analyses of covariance (ANCOVAs), we assessed how caregiver gender (woman/man) and care recipient NPS are associated with caregiver burden (Zarit Burden Interview), anxiety (Geriatric Anxiety Index), quality of life (WHO‐5 Well‐Being Index), preparedness for caregiving (Preparedness for Caregiving Scale), and self‐efficacy (General Self‐Efficacy Scale) in a sample of 112 unpaid family caregivers. Covariates included caregiver age and co‐living status. Bonferroni corrections were used to adjust for multiple comparisons. The sample was comprised of 73.2% women with a mean age of 64.6 ± 12.2 years. Caregivers were primarily spouses (68.5%) and daughters (20.7%) of care recipients.ResultRelative to men caregivers, women caregivers reported higher levels of burden (F(1,103) = 24.4, p<.005) and anxiety (F(1,103) = 8.60, p<.005) and lower quality of life (F(1,103) = 9.85, p <.005). Caregivers who rated their care recipients as having more NPS also reported greater burden (F(1,103) = 27.2, p<.005), higher anxiety (F(1,103) = 26.0, p<.005), and lower quality of life (F(1,103) = 34.9, p <.005). There were no significant interactions between gender and NPS. Gender and presence of NPS were not associated with caregivers’ preparedness for caregiving or general self‐efficacy.ConclusionWhile women and men caregivers in this sample reported similar levels of preparedness and self‐efficacy, women endorsed greater levels of emotional distress in the form of caregiver burden, anxiety, and decreased quality of life. Across caregiver gender, age, and co‐living status, NPS in care recipients predicted poor psychosocial outcomes in our sample. Our data suggest the need for interventions to support women caregivers, and mitigate the burden associated with neuropsychiatric disturbances.

Cultural adaptation of the WHO-iSupport intervention for caregivers of persons with ADRD in Uganda

Background:Family caregivers of persons with ADRD face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected global increase in the number of people with dementia (82 million by 2030 and 152 million by 2050), plus a current Dementia prevalence among persons 60 years and older in Uganda, ranging from 5.5% to 20%, there is paucity of information regarding the psychotherapeutic management of challenges that family caregivers of persons with ADRD go through in many settings in sub-Sahara Africa, including Uganda. This study will contribute to the cultural adaptation of the WHO-iSupport that is an appropriate intervention for caregivers of persons with ADRD in Uganda.Objective:To investigate the current approaches that caregivers use in the support of persons with ADRD, so as to inform the adaptation of the WHO iSupport intervention for Uganda.Methods:This is a cultural adaptation study involving adaptation and pre-test the WHO-iSupport for family caregivers of persons with ADRD in Wakiso, Uganda. We are using a group consensus method that includes a professional translator and independent groups of bilingual experts. Caregivers of patients with ADRD are being recruited into the study. Data will be collected by the researcher and trained research assistants.Outcomes:The primary outcome of this study is the adaptation of the WHO-iSupport psychotherapy.Analysis:Primary analyses will be based on Intention to treat (ITT) principle to avoid any biases that may occur by subjective choice of ineligible subjects. Summary statistics like age will be given as a mean (SD) while for categorical data will be given as a proportion and summarized in tables and graphs.Utility:The proposed study is instrumental as it will be the first known study in our setting that provides a step-by-step guide in the cultural adaptation of an intervention for care giving of persons with ADRD. The A-iSupport is a caregiver focused intervention, that promises better health and care outcomes for family caregivers of persons with ADRD, thus reducing the health care load on mental health workers.

Patient‐related benefits of amyloid PET imaging in unclear dementia: rationale and study design of the randomized ENABLE study

AbstractBackgroundDementia detection rate is very low in German primary care, as well as internationally. Amyloid PET imaging can reliably clarify an unclear diagnosis of dementia or an uncertain diagnosis of Alzheimer’s Disease (AD), improving diagnostic confidence and patient management. At present, systematic evidence of such benefits is still lacking. The patient‐related benefits of amyloid PET imaging (ENABLE) study will test whether amyloid PET will have a benefit on patients' functional status. Here, we describe the design of ENABLE, a randomized controlled two‐armed coverage with evidence development study in Germany.MethodApproximately 1,126 patients from 20 German academic memory clinics with a clinical diagnosis of mild‐moderate dementia of unclear etiology or of AD with low diagnostic certainty will be included in the study. Those patients will be randomly assigned to amyloid‐PET or routine diagnostics (no amyloid‐PET) (see Figure). The primary endpoint is change from baseline in the ability to perform instrumental activities of daily living (IADL) at 18 months as measured by the Amsterdam IADL Questionnaire. Secondary endpoints include the change in diagnosis, diagnostic confidence, cognition and clinical outcomes of patients and caregivers up until 24 months. We will apply linear and mixed linear models to assess primary and secondary endpoints.ResultWe expect patients' and caregivers' quality of life to be improved after receiving an amyloid PET formal diagnosis, as this will result into timely pharmacological and non‐pharmacological interventions.ConclusionThis study will benefit physicians’ and payers’ decisions on the provision of health care for patients with dementia in Germany.

P11: Psychosocial longitudinal correlates of mental and physical health of family caregivers of people with dementia

There is a general consensus that providing care for a relative that has dementia is associated with negative outcomes for caregivers’ mental health. There seem to be also associations with negative physical health outcomes, although the literature on this topic is more scarce. Most of the available research consist in studies with a cross-sectional design. Longitudinal studies focused on psychosocial correlates of mental and physical health of the caregivers are lacking, mostly those analyzing the influence of factors such as behavioral and psychological symptoms of the dementia, caregivers` dysfunctional thoughts, and caregivers’ ambivalent and guilt feelings. The aim of this presentation will be to describe the findings from the Madrid Caregivers Longitudinal Study, that consist in a two year follow-up of family caregivers of people with dementia. Several models will be described testing the longitudinal effect of psychosocial variables on caregivers’ distress (depression and anxiety) and cardiovascular health (measured through biomarkers of inflammation). The practical implications of the findings will be discussed.

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.

P151: A Chronic Grief Management-Intervention-Video: A Profile of the Sample

Objectivesof this presentation are to: Describe the Chronic Grief Management Intervention-Video (CGMI-V) – an ongoing stage I clinical trialDescribe the profile of the study sample using baseline dataStudy purpose:to pilot-test the CGMI-V for establishing effect sizes in caregiver outcomes including chronic grief, symptoms of depression and anxiety, positive states of mind, satisfaction with care in the facility and conflict with staff.Methods:Participants were randomized to either a control condition or to CGMI-V, a manualized intervention delivered on-line over eight consecutive weeks to family caregivers of persons diagnosed with dementia who were placed in long-term care. Caregivers were measured with standardized demographic and situational surveys (baseline only) and with the following instruments at weeks 8 and 24: Knowledge of Alzheimer’s (FKAT)Marwit-Meuser Caregiver Grief Inventory (MM-CGI)CES-D 20Family Perception of Caregiver RoleFamily Perception of Caregiving ToolState Trait Anxiety InstrumentPositive States of MindRecruitment was conducted via direct contacts with facilities, radio and online advertising.Results:For the purposes of this presentation, we are reporting only baseline demographic and situational characteristics of the entire sample. Enrollment closed in November, 2022. The study remains open for follow-up only. The final sample size is 99 participants (Intervention=50; Control=49) recruited from across 14 states in the USA.Participant Characteristics: There were no significant differences in demographics between participants in both conditions. The sample was predominantly Caucasian and female with over two thirds being highly educated, adult children. The average caregiver age was 62.06 (SD=10.20) for those in the CGMI-V condition and 58.18 (SD=11.27) respectively, for those in the control condition. Similarly, there were no significant differences in care recipient demographics. The sample was predominantly Caucasian and female. Over one third of care recipients across both conditions were diagnosed with dementia within the past four years of interviewing. Further analyses are pending.Conclusions:Sample characteristics illuminate similarities across dementia caregivers who placed family members with dementia in long-term facilities across 14 states in the USA. These findings may inform future grief interventions.

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.