Engaging Family Caregivers Research Articles

ENGAGING AND SUPPORTING FAMILY CAREGIVERS IN CARE DELIVERY: RECOMMENDATIONS FROM A NATIONAL CONSENSUS CONFERENCE

Abstract This presentation, by Consensus Conference Director, Dr. Riffin, will describe the major priorities identified by the 2021 Conference on Engaging Family Caregivers of Persons with Dementia in Healthcare Delivery. Recommendations centered on the need for multidisciplinary collaborations that attend to (1) Identification and assessment of dementia caregivers in care delivery settings, (2) Reimbursement and financing for caregiver assessment and support, (3) Caregiver training and support across the care continuum, (4) Healthcare provider education on family-centered care, and (5) Technology innovations that support dementia caregivers. Across all areas, there was consensus regarding the need to leverage implementation science to promote the uptake of evidence-based interventions in clinical practice and use community-driven approaches to engage stakeholders from traditionally marginalized groups in future and ongoing initiatives. Findings are being used to inform federal agencies and foundations about high-priority areas, provide guidance to national committees, and accelerate programmatic research on caregiver engagement and support.

ENGAGING AFRICAN AMERICAN FAMILY CAREGIVERS THROUGH ART AND CREATIVE ACTIVITIES: A CASE STUDY

Abstract Studies have shown that engaging family caregivers of people with dementia in creative activities can provide therapeutic benefits by relieving stress and promoting well-being. However, there is a dearth of studies focusing on the involvement of racial minority family caregivers of people with dementia in research involving art and creative activities. The purpose of this study is to present the results of a case study interview with an artist-educator-community collaborator who acted as a key facilitator for the ACTION ARTS study. The purpose of the ACTION ARTS study was to utilize mobile technology applications for facilitating creative activities to enhance health and well-being of African-American family caregivers and their loved ones in the middle-to-late stages of dementia. The study included activities such as memory stimulation, art viewing, art making, and other forms of creative expressions. The research question for the current case study was: What are the best practices for engaging African-American family caregivers of older adults in the middle-to-late stages of dementia in research involving art and creative activities? Thematic analysis of the qualitative data from the case study interview yielded the following recommendations/results (1) Design the program of art and/or creative activities in an easy way to facilitate interaction among participants; (2) Make the program as accessible and relevant as possible so everyone is able to relate to it; (3) Emphasize areas of commonality that could help in giving both the facilitators and participants food for thought.

A POLICY- AND PRACTICE-ALIGNED RESEARCH AGENDA FOR ENGAGING AND SUPPORTING DEMENTIA CAREGIVERS IN CARE DELIVERY

Abstract The Cornell Institute for Translational Research on Aging (CITRA) Research-to-Practice Consensus Workshop Model is an evidence-based method for generating practice- and policy-informed research agendas on aging-related topics. The model aims to bridge the gap between research-based knowledge and practice-based insight by involving multidisciplinary stakeholders in all aspects of the agenda-setting process. Using the CITRA model as a guiding framework, we convened an NIA-funded Conference on Engaging Family Caregivers of Persons with Dementia in Healthcare Delivery, with the goal of generating actionable research priorities that will lead to improvements in dementia caregiver identification, assessment, and support in health and long-term care settings. Conference attendees were multidisciplinary thought leaders representing five stakeholder groups: family caregivers of persons with dementia, healthcare providers, researchers, payers, and policy advocates. This symposium will describe the CITRA model, using our caregiver conference as an example, and provide practical guidance on how to use the model to promote cross-disciplinary dialogue and integrate research, policy, and practice perspectives. The first presentation will provide an overview of the CITRA model and its 5-step method (Pillemer). Subsequent presentations will describe the model’s application to the topic of improving caregiver identification and support in care delivery (Griffin) and discuss how novel technology-based adaptations to the model helped to facilitate hybrid participation of virtual and in-person attendees (Falzarano). The final presentation will delineate the major priorities that resulted from the conference, discuss ongoing and future dissemination activities, and offer practical suggestions for leveraging the CITRA model in future consensus efforts (Riffin).

Policies to Sustain Employment Among Family Caregivers: The Family Caregiver Perspective.

The work of caregiving can make it difficult to sustain employment. This study aimed to clarify what family caregivers themselves think is important in remaining employed, as part of work mandated under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2018. Data came from a Request for Information promulgated by the Administration for Community Living, resulting in 1147 family caregiver responses, and 12 focus groups. Findings support many goals identified by caregiver-advocates, such as expanding the Family and Medical Leave Act, and access to paid time off and sick leave; caregivers also value flexible work arrangements. However, the study further revealed a need for supportive work environments that protect caregivers against workplace discrimination and negative attitudes held by both managers and colleagues, and thus for employer education about the caregiving experience as well as caregivers' needs for workplace supports and benefits, and possibly anti-discrimination legislation.

Congressional Laws Provide Resources to Support Family Caregivers.

Approximately 70% of adults aged ≥65 years will need some type of long-term care services, including unpaid care from relatives, friends, or partners. More than 53 million American adults provide upwards of $500 billion in unpaid health care as family caregivers. In 2018, Congress enacted two laws supporting family caregiving: the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, directing the Secretary of Health and Human Services to develop a national caregiving strategy. Advisory Councils for these two acts developed a total of 48 recommendations as the foundation for this strategy. Resources collected to inform these recommendations are now catalogued and publicly available. This opportunity for gerontological nurses to gain additional knowledge and access to services to support family caregivers and grandparents raising grandchildren will advance their work in assessing, documenting, and coordinating care for family caregivers and care recipients. [Journal of Gerontological Nursing, 48(9), 5-7.].

The experiences of home care team members regarding the needs of family caregivers of heart failure patients in home health care services in Iran: A qualitative study.

Home healthcare guidelines emphasize the engagement of family caregivers of heart failure (HF) patients in patient care at home. Thus, this study was conducted with the aim to explore the deep experiences of home care team members regarding the needs of family caregivers of HF patients in home healthcare services in Iran. The present qualitative study was performed with a conventional content analysis approach. Data were collected through in-depth, semi-structured interviews with 23 participants who were recruited through purposive sampling. The Data were analyzed using the Graneheim and Lundman method for conventional content analysis in MAXQDA Software. The participants included 14 women and 9 men with the mean age of 46.21 ± 11.44 years. After analyzing the interviews, 3 main categories and 15 subcategories were extracted. The main categories were "family caregiver's unmet needs" (with 5 subcategories), "Empowering Informal Caregivers" (with 3 subcategories), and "access to a standard home healthcare system" (with 7 subcategories). Deep understanding of the needs of family caregivers of HF patients in home health care services increases the quality of services, the quality of life (QOL) of the family, and prevents patients' hospital readmissions. Moreover, it will contribute to our next project of the home healthcare guideline for HF patients in the health care system of Iran. Identifying the training needs of caregivers within the home health care services has an important role in the designing of education strategies in policy making programs at the level of the Ministry of Health or planning at lower levels of the health network.

Viral Respiratory Infections in Hospitalized Children With Symptomatic Caregivers.

The burden of healthcare-associated viral respiratory infections (HAVRIs) among children is significant. While healthcare workers are often the focus for infection prevention strategies, little is known about the impact of sick caregivers and hospital visitors on the incidence of pediatric HAVRIs. The objective of this descriptive study was to determine the proportion of pediatric HAVRIs following contact with a sick caregiver or visitor. A retrospective chart review was performed of all HAVRIs that occurred between December 2017 and July 2019 in a pediatric tertiary care center. A HAVRI was defined as a laboratory-confirmed respiratory viral illness occurring more than 72 hours after admission. Forty-four HAVRIs occurred in 37 patients during the study, predominantly among patients aged <24 months (n = 32, 72.7%) and with comorbidities (n = 42, 95.5%). For 9 HAVRIs (20.5%), contact with a sick caregiver (n = 8, 18.2%) or visitor (n = 2, 4.5%) in the 7 days before diagnosis was documented. In the 72 hours before HAVRI onset, 18 of the 44 patients (40.9%) were in a single-bed room and 6 of them (33.3%) were under additional precautions. Twelve patients (27.3%) had new or increased oxygen requirements and 4 (9.1%) were transferred to the ICU. There were no associated deaths. Contact with a sick caregiver or visitor is a potential risk factor for acquiring a HAVRI. Our study reinforces the importance of engaging family caregivers in infection prevention and control strategies in pediatric care settings.

Technology Is out There for the Betterment of Us: African American Family Caregivers and COVID-19

Unpaid family caregivers are mostly responsible for bearing the costs associated with caring for older adults with dementia. Importantly, the ongoing COVID-19 pandemic has created unforeseen challenges for many family caregivers. Specifically, the restrictions put in place to limit the spread of the coronavirus may be exacerbating the challenges faced by these caregivers as they try to navigate the system. Further, studies have shown that family caregivers who are members of a racial or ethnic minority group such as African-Americans or Hispanics face unique challenges when caring for their loved ones. Additional challenges may include socioeconomic disadvantages, health disparities, and language barriers that make it more difficult to access healthcare and social services. In this study, we examined the perspectives of African-American family caregivers of older adults on the feasibility of utilizing technology as a coping strategy (including for research participation) during the ongoing COVID-19 pandemic. The research question was: What are the perspectives of African-American family caregivers of people with dementia on the feasibility, opportunities, and challenges of technology as a means to engage family caregivers during a pandemic? In-depth one-on-one interviews were conducted with 12 African-American/black family caregivers. Thematic analysis of the qualitative data yielded the following three themes: (1) Acceptance that technology will play a greater role in the world going forward, and family caregivers need to adapt; (2) Opportunities to avoid social isolation while maintaining links with critical community resources; and (3) Challenges due to possible loss of privacy and lack of physical interactions

Evaluation of Family Caregivers' Use of Their Adult Care Recipient's Patient Portal From the 2019 Health Information National Trends Survey: Secondary Analysis.

BackgroundPatient engagement is critical for realizing the value of telehealth modalities such as the patient portal. Family caregiver engagement may also be critical for facilitating the use of the patient portal among adult patients, including older adults.ObjectiveThis study aims to analyze the 2019 Health Information National Trends Survey to characterize family caregivers’ use of their care recipient’s patient portal in terms of sociodemographic, health, and caregiving characteristics and caregivers’ use of their own portal.MethodsWe conducted a secondary analysis of cross-sectional data from the National Cancer Institute’s Health Information National Trends Survey 5 Cycle 3. This survey was administered to 5438 US adults between January and May 2019. We analyzed data from 320 respondents who were identified as family caregivers. We created measures to reflect family caregivers’ use of their care recipient’s and their own portal, caregiver demographic and caregiving characteristics, and care recipient health characteristics.ResultsOver half of the caregivers (179/320, 55.9%) reported using their own portal at least once, whereas only one-third (105/320, 32.8%) reported using their care recipient’s record in the previous 12 months. Caregivers using their own portal were significantly more likely to use their care recipient’s portal (odds ratio 11.18; P<.001).ConclusionsPolicies should enable patients to designate family caregivers who can access their patient portal. Providers could screen caregivers for challenges in their caregiving responsibilities that may be addressed through the portal so they can better support their adult relatives. Interventions to support family caregivers, especially older caregivers, in using their own portal may facilitate their use of their care recipient’s portal.

415 - Promoting empowerment for nursing homes residents with dementia: a feasibility study of the SPAN+ program

Introduction:For feeling empowered, a sense of identity, usefulness, control, and self-worth is important for people living with dementia. We developed an empowerment intervention called the SPAN+ program to promote empowerment for nursing home residents with dementia. The aim of this study is to evaluate the feasibility of the SPAN+ program for these residents.Methods:Healthcare professionals of two dementia special care units of one care organization worked with the SPAN+ intervention, which lasted for four months (September 2020 – December 2020). During the intervention, they reflected together on the four themes of empowerment for each resident, and set specific goals. Subsequently, they discussed and adjusted these goals with family caregivers and the person living with dementia (when possible). Furthermore, their personal professional development was targeted by specific exercises around the themes of empowerment.We used the method of Bowen and colleagues (2009) to evaluate the feasibility of the SPAN+program in terms of acceptability, demand, implementation, practicality, integration, and possible efficacy.Qualitative data was collected through interviews and a focus group discussion with participating healthcare professionals. Quantitative data was collected through standardized questionnaires filled in by healthcare professionals and family caregivers at baseline and at four- month follow-up.Results:Preliminary results show that the SPAN+ program supports healthcare professionals to increase attention for empowerment of residents living with dementia, by reflecting together with other healthcare professionals on what matters for each individual resident. Difficulties were reported in engaging family caregivers in the SPAN+ program.Conclusion:The SPAN+ program seems valuable to increase the focus of healthcare professionals on a sense of identity, usefulness, control, and self-worth of people living with dementia in a nursing home, and to promote their empowerment.

The Association between Caregiver Burden and Resilience in Family Caregivers of Older Adults with Chronic Obstructive Pulmonary Diseases (COPD)

Introduction: Family caregivers face a high burden when caring for a person with a chronic illness. The close engagement of family caregivers in the care of older adults with COPD may predispose them to anxiety, frustration, and social isolation, which may consequently affect their resilience and perceived stress. Objective: The purpose of this study was to examine the relationship between caregiver burden and resilience in family caregivers of older adults with COPD. Materials & Methods: This cross-sectional, descriptive study was conducted on 240 family caregivers of older adults with COPD who were referred to a specialty pulmonology clinic in Iran. The participants were recruited by convenience sampling. Data were collected using the Zarit Burden Inventory (ZBI) and the 25-item Connor Davidson Resilience Scale (CD-RISC-25). Statistical analyses included t-test, ANOVA, Pearson’s correlation coefficient, and stepwise multiple regression. Results: The mean age of the caregivers was 51.20 ± 11.84 years. The majority of participants experienced low (55.7%) or moderate (43.8%) caregiver burden. The overall mean caregiver burden score was also moderate (20.01 ± 6.46). The overall mean resilience score was high (77.85 ± 10.17). An inverse relationship was found between resilience and caregiver burden (r= -0.38; P<0.001)). Conclusions: The results showed that as resilience increases, caregiver burden decreases. The present study recommended that implementing of early interventions (counseling intervention) for promoting resilience, increase their tolerance to problems, and reduce caring burden among family caregivers of older adults with COPD. Funding Information: This study was supported by research deputy at Babol University of medical sciences Declaration of Interests: There are no conflicts of interest. Ethics Approval Statement: The study was approved by the Ethics Committee of Babol University of Medical Sciences, Babol, Iran (Ethic code: IR.MUBabol.HRI.REC.1398.326). Written informed consent was obtained from all the participants prior to beginning the study.

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

BackgroundAn upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life. A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life.MethodsA realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process.ResultsTwenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners.ConclusionsPrimary care practitioners’ use of tools to assess patients/families’ needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families’ outcomes.

Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings

BackgroundFamily caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy.MethodsThis is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts.ResultsAs the hours dedicated to elder care increases, both objective and developmental caregiver’s burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens’ management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers’ pivotal role.ConclusionsA dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process.

COVID-19 and Inpatient Rehabilitation Nursing Care: Lessons Learned and Implications for the Future.

The SARS-CoV-2 coronavirus (COVID-19) pandemic is impacting post-acute inpatient rehabilitation nursing practice from preadmission assessment to inpatient care delivery and transition planning. Patients with disability following COVID-19 require interventions to address respiratory, cardiovascular, neurological, musculoskeletal, and psychosocial issues. The pandemic has resulted in changes to program structures and how inpatient rehabilitation facilities approach family caregiver engagement amidst visitation restrictions. Technology solutions can be utilized to reduce the patient and their family's feelings of isolation and support caregiver preparation for discharge. Nurse leaders are essential in supporting staff during this crisis through authentic presence and providing resources and training. Rehabilitation nurses are key in helping patients and families manage rehabilitation and the aftermath of COVID-19 to restore optimal functioning. In this clinical consultation, we synthesize insights learned from the COVID-19 responses at three inpatient rehabilitation facilities. We describe the impact of rehabilitation nursing interventions to improve outcomes for patients with COVID-19 and their caregivers.

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement.

ObjectiveTo shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients’ and family caregivers’ meaningful engagement as partners in research projects.MethodsA prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted.Results119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research.ConclusionsThe shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts.Patient or public contributionA researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up.

A novel behavioral health program for family caregivers of children admitted to a transitional chronic ventilator unit.

The care of mechanically ventilated pediatric patients is complex and burdensome. It is essential to adequately support the family caregivers of these children to optimize outcomes; however, there is no literature describing interventions for caregivers in this population. This study described a novel behavioral health program and examined its impact on family caregiver engagement and psychological distress on a pediatric inpatient chronic ventilator unit. Electronic chart review was completed with retrospective and prospective participant enrollment for the purposes of longitudinal evaluation of caregiver engagement. For analytic purposes, participants were grouped into three categories: (1) preprogram, (2) postprogram, and (3) postprogram with completion of psychotherapy. The behavioral health program was associated with increased caregiver participation in rounds, t = 7.76, p = < .001. Parents who completed a course of psychotherapy within the behavioral health program demonstrated reduced time to training completion (F = 5.89; p < .01), higher staff-rated caregiver engagement (F = 3.69; p < .05), and significantly reduced levels of caregiver distress (t = 2.09; p < .05).

Implementation of ABCDEF care bundle in intensive care units: A cross-sectional survey.

Delirium affects up to 80% of patients in intensive care units (ICUs) and is associated with higher mortality, physical dependence, and health care costs. The 2018 pain, agitation, delirium, immobility, and sleep guideline recommended ABCDEF care bundle for delirium prevention and management. However, limited information is available regarding the adoption of the care bundle in ICUs in Mainland China. To assess the current implementation of the ABCDEF care bundle for delirium prevention as reported by ICU nurses in Mainland China. A cross-sectional study was conducted. A cross-sectional online survey using a validated questionnaire about the practices of the ABCDEF care bundle was conducted among 334 registered nurses in 167 ICUs of 65 cities in Mainland China. Almost 50% of the sampled ICU nurses were unaware of the ABCDEF care bundle, though 86.83% of the surveyed ICUs implemented pain assessments and 95.51% implemented sedation assessments. Nearly half (46.41%) of the surveyed ICUs performed routine spontaneous awaking trials, with 21.26% performing them daily. Spontaneous breathing trials were performed in 38.32% of the surveyed ICUs. Only 47% of the surveyed ICUs routinely monitored patients for delirium. About one-third (38.35%) of the surveyed ICUs were supported by specialist teams that implemented the mobilization programmes. Most ICUs restricted the duration of family visits per day (<0.5hour: 61.67%; 0.5-2hours: 23.65%; >2hours: 3.29%) and only 28.14% of the surveyed ICUs employed dedicated staff to support the families. Although most of the surveyed ICUs implemented pain and sedation assessments, many of them did not implement structured delirium assessments. Early mobilization programmes and family participation should be encouraged. Promoting the uses of a reliable delirium assessment tool such as Confusion Assessment Method for Intensive Care Unit patients, building an early mobilization team, and engaging family caregivers in the care plan may contribute to improved patients' clinical outcomes.

Caregiver-Centered Communication: Engaging Family Caregivers

Older adults are often relying on a family member or other informal caregiver (friend or other) to jointly navigate the health care system and cope with the ramifications of serious illness; thus, the patient-caregiver dyad becomes the unit of care. The caregiving role becomes crucial in cases where patients are facing a condition that limits their cognitive and functional abilities and caregivers are called to act as proxy decision makers for significant treatment and symptom management decisions. Caregivers often report that they feel isolated and overwhelmed, and in some cases experience significant barriers in communicating with health care providers. It is important that clinicians communicate in a way that acknowledges and addresses caregivers’ preferences, needs and perspectives. Caregiver centered communication can facilitate a more effective adaptation throughout the illness course with better adherence to recommended treatment plans and greater satisfaction with care for both patients and families, as well as a more comprehensive response to their psychosocial needs. While health care organizations often aim to increase caregiver engagement and involvement in care processes, there is a lack of tools or strategies not only to more actively engage caregivers but also to assess how ongoing approaches perform in terms of facilitating meaningful and inclusive communication. This symposium will review existing tools and a new instrument to measure caregiver centered communication, challenges and opportunities in measuring the quality of communication with caregivers and highlight empirical data of communication quality in various health care settings including home care and hospice.

Federal Advisory Councils Established to Assist Working Caregiving Families

This presentation will describe the legislative charge of two advisory councils established in 2018 through the Recognize, Assist, Include, Support and Engage Family Caregivers Act and the Supporting Grandparents Raising Grandchildren Act to support working family caregivers. The advisory councils are charged with 1) providing recommendations on effective models of family caregiving 2) improving coordination across federal government programs; and 3) identifying, coordinating, and promoting information, resources, and 4) best practices for working grandparents raising grandchildren, while maintaining their own physical, mental, and emotional well-being. The experiences of working family caregivers will be the foundation for these recommendations that are being developed over the next two years to present to Congress. These recommendations will support the development and execution of a national family caregiving strategy.

SosCaregivers: piloting of a psycho-social service for family caregiver in a hard-to-reach setting

Abstract Background ”Ageing-in-place” may improve elderly citizens' quality of life and the sustainability of welfare systems. In this process engaging family caregivers is crucial. Methods A community-based participatory research in the remote area of Vallecamonica was enacted. First, we surveyed unmet needs of family caregivers. Then, a scoping literature review on existing interventions for engaging family caregivers was performed. Third, 4 co-design workshops were conducted to co-generate a new service. Finally, the service was piloted for a period of 6 months and evaluated. Results 51 caregivers participated in the survey: they were mainly females, mean 60 y.o and with medium-low level of education. The scoping review resulted in only 14 interventions targeted to elderly's caregivers in remote areas. The workshops involved 27 caregivers and co-designed a new psycho-social service (SOSCargivers) articulated into: 1) a structured informative platform to facilitate health literacy and information seeking; 2) a tailored educational program focused on medical and practical aspects related to elderly care; 3) a set of peer-to-peer meetings for experience sharing and mutual support; 4) a “caregivers board” was created to lead the service. In the piloting 5 training sessions, 5 peer-to-peer meetings, 3 meeting with the “citizens board” were enabled. Conclusions The service was positively received by caregivers, although participation wasn't high. Co-designing the service with its expected users facilitates the depth understanding of local people's needs and expectations. SOSCaregivers may support family caregivers of elderly citizens in hard to reach areas by both delivering more value and giving them an active role in the social-care network. Key messages Family caregivers’ engagement is crucial for integrated and sustainable services in hard to reach communities. Co-designing the service with its expected users facilitates the Department understanding of local people’s needs and expectations.