Academic literature on the topic 'Lifetime Care and Support Advisory Council'

Background/Objectives The Centre for Family Medicine Mobility Clinic strives to provide high quality primary care to persons living with spinal cord injury or other health conditions that affect mobility. The Mobility Clinic Resource Abilities Council (MC RAC) was established to serve in an advisory capacity, making recommendations on matters that impact the experience of patients with physical disabilities and their support persons at the Mobility Clinic. Objectives MC RAC provides feedback on, and ideas for initiatives and programs that support and enhance the model of person-centred care. It also advances collaborative patient engagement and person-centred care principles and practices within primary care for persons with physical disabilities Methods/Overview Members include individuals with lived experience with physical disability, their support persons, and Mobility Clinic staff. The council was established August 2022 and meets virtually once per month for approximately 90 minutes. Results MC RAC has successfully met nine times and has provided feedback on the following topics: Breast & Cervical Cancer screening Initiative for People with Physical Disabilities, Mobility Clinic website development, building pathways for advocacy with the KW4 OHT, Circulus Network webinar topics, Mobility Clinic organization and clinical flow. Feedback to be implemented into Mobility Clinic activities. Conclusions Patient and support persons involvement in decision-making processes improve care experiences and contribute to better health outcomes for patients. We will continue to work and develop our patient advisory council to better support the Mobility Clinic’s patients and their support persons.

Abstract The RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018) has been tasked to support the Secretary of Health and Human Services in developing a national family caregiving strategy. The Council began by (in 2021) identifying five key Goals critical to supporting family caregivers, which were reported to Congress in the Council’s Initial Report; the next step (in 2022) was to identify how these Goals are to be operationalized via specific actions, as well as the stakeholders that needed to be involved. This symposium discusses Goal 4, which states that “Family caregivers’ lifetime financial and employment security is protected and enhanced,” a goal incorporating diverse components, including federal legislation (expanding FMLA, for example), enhancing workplace security for working caregivers, and ways to pay family caregivers for providing supportive services. The first paper, by Salom Teshale, PhD, will provide an overview of the Council’s work and the strategies that have been chosen to support the overall national strategy. The second paper, by Eileen J. Tell, MPH, will describe strategies to improve the ability of caregivers to remain and thrive in the workplace. Pamela Nadash, PhD, will report on the research that identified the expansion of self-directed programs to incorporate payment for family caregivers as key, and the fourth paper by Rani Snyder will conclude by identifying the research needed to move these efforts forward. Greg Link of the Administration for Community Living will act as discussant.

Abstract Since 2019, the RAISE Family Caregiver Advisory Council (FCAC) has met regularly to carry out its work of developing a national family caregiving strategy. This strategy incorporates five goals to support family caregivers, and key actions that a range of stakeholders can carry out centered around these goals. This overview will describe the RAISE FCAC’s work in developing the national family caregiving strategy, and highlight the development of recommendations and key actions to support the fourth goal, “Family caregivers’ lifetime financial and employment security is protected and enhanced.” This goal’s recommendations include supporting caregivers through flexible workplace policies; supporting affordable long-term services and supports; supporting financial education and planning; and reducing overall negative financial impacts of caregiving short and long-term.

Between 1947 and 1965, 408 British children were sent to Australia under the auspices of the Church of England Advisory Council of Empire Settlement and its successor bodies. Situating this work in wider policy contexts, this article examines how the council involved itself in this work with support from some senior clergy and laity despite being poorly resourced to do so. Noting the council's failure to maintain standards expected of this work by the Home Office and child-care professionals, the article considers factors underlying this which both reflected wider tensions over child migration in the post-war period as well as those specific to the council.

Abstract Through the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act of 2018, the RAISE Family Caregiver Advisory Council was created. Since 2019, the Council has directed in-depth information-gathering and research efforts to develop recommendations and an implementation plan for addressing our critical family caregiving crisis. The Council recently released the 2022 National Strategy to Support Family Caregivers, which highlights nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. Integrating measures of improvement with regard to family caregiver support, across the domains identified in the National Strategy into the LTSS State Scorecard will provide a tool by which progress toward the RAISE goals can be measured. Currently, the Scorecard focuses on indicators specific to Supporting Working Family Caregivers. While these are critical, our research team has identified at least 10 additional indicators that could be included and that would address other caregiver support domains such as adequacy of direct care workforce, integration of family caregivers into care plans, direct pay to family caregivers, and more. In this session we will identify the indicators, explain how they relate to RAISE goals and discuss methods for including them in the Scorecard.

Abstract Family caregivers are the glue holding together the delivery and financing of long-term care. Replacing family care with paid care would cost roughly $470 billion each year. But family caregivers are struggling. They face many challenges – most notably the financial stress and the need for services and supports. Other challenges include lack of respite care, need for caregiver training, and lack of access to quality paid workforce. In order to address these challenges, Congress authorized the RAISE Family Caregiving Advisory Council. The RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act directs the Secretary of Health and Human Services to develop a national family caregiver strategy. This session presents the findings of two years of focus groups and interviews with family caregivers and hundreds of stakeholder organizations that support them, providing concrete input to the Biden administration on how to deliver on the broad objectives of the RAISE Act.

Abstract The National Academy for State Health Policy hosts both the RAISE Act Family Caregiving Resource and Dissemination Center and the Hub for State Strategies to Build and Support Palliative Care, with generous funding from The John A. Hartford Foundation. The value of supporting individuals with serious illness and complex conditions as well as their family caregivers through telehealth, care management, advance care planning, and other added family caregiver supports has been especially evident during the COVID-19 pandemic. Policymakers are now grappling with how to restructure hard-hit health care and long-term services and supports systems to better support these individuals and their family caregivers. The State Hub provides concrete resources for states working to implement and expand high-quality palliative care, and the RAISE Center is assisting the Family Caregiving Advisory Council with creating the country’s first national Family Caregiver Strategy.

Abstract INTRODUCTION Developing and advancing patient-centered care within neuro-oncology is an essential element of any tertiary brain tumor center. Patient-centered care of neuro-oncology patients requires a holistic approach that integrates oncologic treatment with social and psychological support. OBJECTIVE The aim of this study is to evaluate how a Patient Family Advisory Council can be created within an existing brain tumor center and utilized to improve patient-centered care. METHODS Current patients and caregivers were recruited by brain tumor staff to participate in monthly meetings. All participants underwent screening and training by our Patient Education Research Center team. Discussions focused on current and future brain tumor center initiatives, and participants were encouraged to give feedback from the patient perspective. New ideas to improve the patient experience were solicited. RESULTS A total of 15 participants (female = 57%) were recruited, including 10 with grade 3 or higher brain tumors. Monthly meetings, in-person or virtual, were held for two years. Utilizing participant feedback, the group updated our 80-page patient handbook that contained a variety of patient-caregiver focused resources. Participants also provided feedback on other brain tumor center initiatives such as development of a magnet featuring key phone numbers, an easily accessible website URL for emergencies, and numerous updates to the external website. Additional discussions involved development of neuro-oncology care pathways as we move to a stand-alone cancer center facility and initiation of OncoSTAT and palliative services in this population. CONCLUSION Brain tumor patients require a comprehensive oncologic treatment team as well as a wide variety of support services. A Patient Family Advisory Council is an effective method of advancing patient-centered care and a step toward improving the neuro-oncology patient experience.

AbstractTraumatic injury, both unintentional and intentional, is a serious public health problem. Trauma care systems play a significant role in reducing mortality, morbidity, and disability due to injuries. However, barriers to the provision of prompt and appropriate emergency medical services still exist in many areas of the United States. Title XII of the Public Health Service Act provides for programs in support of trauma care planning and system development by states and localities. This legislation includes provisions for: 1) grants to state agencies to modify the trauma care component of the state Emergency Medical Services (EMS) plan; 2) grants to improve the quality and availability of trauma care in rural areas; 3) development of a Model Trauma Care System Plan for states to use as a guide in trauma system development; and 4) the establishment of a National Advisory Council on Trauma Care Systems.

Abstract This presentation reports on feedback from advocates and researchers, those working in organizations serving family caregivers, and family caregivers themselves regarding the 2022 National Strategy to Support Family Caregivers. The Strategy was issued by the RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018). A Request for Information (RFI) published in the Federal Register garnered nearly 600 responses from a wide range of individuals and organizations, providing feedback about top priorities for action, topics or populations that were not adequately addressed, and recommendations for actions that could help meet stated objectives; these comments will prove critical in implementing the National Strategy, as well as in updating and revising it. This presentation sets the progress of the National Strategy in context, reports on the RFI analysis, and describes next steps, highlighting key areas of focus for the federal government, states, and other entities. Priorities included expanding the direct care workforce and increasing access to caregiver training and supports, particularly respite. Other top comments pertained to financial and workplace security for family caregivers - encouraging caregiver-friendly workplaces, paying family members to provide care, and strengthening the Family and Medical Leave Act. Respondents broadly endorsed the Strategy and noted the need for campaigns promoting greater awareness of family caregiving. The findings suggest that there is strong consensus among caregiver advocates regarding the most critical areas for action and the most favored strategies to achieve caregivers’ priority goals.

Overview Skin cancer prevention is a component of the new Cancer Plan 2022–27, which guides the work of the Cancer Institute NSW. To lessen the impact of skin cancer on the community, the Cancer Institute NSW works closely with the NSW Skin Cancer Prevention Advisory Committee, comprising governmental and non-governmental organisation representatives, to develop and implement the NSW Skin Cancer Prevention Strategy. Primary Health Networks and primary care providers are seen as important stakeholders in this work. To guide improvements in skin cancer prevention and inform the development of the next NSW Skin Cancer Prevention Strategy, an up-to-date review of the evidence on the effectiveness and feasibility of skin cancer prevention activities in primary care is required. A research team led by the Daffodil Centre, a joint venture between the University of Sydney and Cancer Council NSW, was contracted to undertake an Evidence Check review to address the questions below. Evidence Check questions This Evidence Check aimed to address the following questions: Question 1: What skin cancer primary prevention activities can be effectively administered in primary care settings? As part of this, identify the key components of such messages, strategies, programs or initiatives that have been effectively implemented and their feasibility in the NSW/Australian context. Question 2: What are the main barriers and enablers for primary care providers in delivering skin cancer primary prevention activities within their setting? Summary of methods The research team conducted a detailed analysis of the published and grey literature, based on a comprehensive search. We developed the search strategy in consultation with a medical librarian at the University of Sydney and the Cancer Institute NSW team, and implemented it across the databases Embase, MEDLINE, PsycInfo, Scopus, Cochrane Central and CINAHL. Results were exported and uploaded to Covidence for screening and further selection. The search strategy was designed according to the SPIDER tool for Qualitative and Mixed-Methods Evidence Synthesis, which is a systematic strategy for searching qualitative and mixed-methods research studies. The SPIDER tool facilitates rigour in research by defining key elements of non-quantitative research questions. We included peer-reviewed and grey literature that included skin cancer primary prevention strategies/ interventions/ techniques/ programs within primary care settings, e.g. involving general practitioners and primary care nurses. The literature was limited to publications since 2014, and for studies or programs conducted in Australia, the UK, New Zealand, Canada, Ireland, Western Europe and Scandinavia. We also included relevant systematic reviews and evidence syntheses based on a range of international evidence where also relevant to the Australian context. To address Question 1, about the effectiveness of skin cancer prevention activities in primary care settings, we summarised findings from the Evidence Check according to different skin cancer prevention activities. To address Question 2, about the barriers and enablers of skin cancer prevention activities in primary care settings, we summarised findings according to the Consolidated Framework for Implementation Research (CFIR). The CFIR is a framework for identifying important implementation considerations for novel interventions in healthcare settings and provides a practical guide for systematically assessing potential barriers and facilitators in preparation for implementing a new activity or program. We assessed study quality using the National Health and Medical Research Council (NHMRC) levels of evidence. Key findings We identified 25 peer-reviewed journal articles that met the eligibility criteria and we included these in the Evidence Check. Eight of the studies were conducted in Australia, six in the UK, and the others elsewhere (mainly other European countries). In addition, the grey literature search identified four relevant guidelines, 12 education/training resources, two Cancer Care pathways, two position statements, three reports and five other resources that we included in the Evidence Check. Question 1 (related to effectiveness) We categorised the studies into different types of skin cancer prevention activities: behavioural counselling (n=3); risk assessment and delivering risk-tailored information (n=10); new technologies for early detection and accompanying prevention advice (n=4); and education and training programs for general practitioners (GPs) and primary care nurses regarding skin cancer prevention (n=3). There was good evidence that behavioural counselling interventions can result in a small improvement in sun protection behaviours among adults with fair skin types (defined as ivory or pale skin, light hair and eye colour, freckles, or those who sunburn easily), which would include the majority of Australians. It was found that clinicians play an important role in counselling patients about sun-protective behaviours, and recommended tailoring messages to the age and demographics of target groups (e.g. high-risk groups) to have maximal influence on behaviours. Several web-based melanoma risk prediction tools are now available in Australia, mainly designed for health professionals to identify patients’ risk of a new or subsequent primary melanoma and guide discussions with patients about primary prevention and early detection. Intervention studies have demonstrated that use of these melanoma risk prediction tools is feasible and acceptable to participants in primary care settings, and there is some evidence, including from Australian studies, that using these risk prediction tools to tailor primary prevention and early detection messages can improve sun-related behaviours. Some studies examined novel technologies, such as apps, to support early detection through skin examinations, including a very limited focus on the provision of preventive advice. These novel technologies are still largely in the research domain rather than recommended for routine use but provide a potential future opportunity to incorporate more primary prevention tailored advice. There are a number of online short courses available for primary healthcare professionals specifically focusing on skin cancer prevention. Most education and training programs for GPs and primary care nurses in the field of skin cancer focus on treatment and early detection, though some programs have specifically incorporated primary prevention education and training. A notable example is the Dermoscopy for Victorian General Practice Program, in which 93% of participating GPs reported that they had increased preventive information provided to high-risk patients and during skin examinations. Question 2 (related to barriers and enablers) Key enablers of performing skin cancer prevention activities in primary care settings included: • Easy access and availability of guidelines and point-of-care tools and resources • A fit with existing workflows and systems, so there is minimal disruption to flow of care • Easy-to-understand patient information • Using the waiting room for collection of risk assessment information on an electronic device such as an iPad/tablet where possible • Pairing with early detection activities • Sharing of successful programs across jurisdictions. Key barriers to performing skin cancer prevention activities in primary care settings included: • Unclear requirements and lack of confidence (self-efficacy) about prevention counselling • Limited availability of GP services especially in regional and remote areas • Competing demands, low priority, lack of time • Lack of incentives.