Exploring experiences of supports for suicide bereavement in Ireland: protocol for a national survey

Background A suicide death impacts upon the wellbeing of close family members and friends but has also been shown to affect many people outside of this immediate circle. This will be the first large-scale national study of adults bereaved or affected by suicide in Ireland, using a cross-sectional online survey. The overarching aim will be to gain insight into the experiences of supports received by people bereaved or affected by suicide and to identify the barriers to engagement following their loss. Methods A cross-sectional survey will be conducted among adults in Ireland who have been bereaved or affected by suicide. This project will seek to represent people with different demographics and backgrounds in the Irish population using a multifaceted approach to survey recruitment. A range of validated measures will be used to examine participants’ current wellbeing and grief experience. A combination of closed and open-ended questions will provide participants the opportunity to share their individual experiences, the services and supports available to them, and barriers and enablers to accessing supports. Results Quantitative data will be analysed using descriptive statistics. Chi-squared tests will be used to compare subgroups within categorical data items, and multivariable regression models will be used to examine differences in psychosocial and physical wellbeing across key groups. Qualitative content analysis will be used for qualitative responses to open-ended questions. Conclusions The survey will provide an in-depth understanding of the psychosocial and mental health impacts of suicide bereavement in Ireland; insight into the range of informal and formal supports accessed; and will identify unmet needs and challenges of accessing appropriate and timely supports. The findings will inform current national actions aimed at ensuring the standardisation and quality of the services and supports for those bereaved or affected by suicide.

Youth-Centered Transition Planning for Students With Disabilities Who Experience Foster Care

Youth with disabilities who experience foster care (YDFC) often experience poor long-term adult outcomes. However, when educators help them access appropriate services and supports YDFC can reach their maximum potential. This chapter describes a youth-centered approach to transition planning for this vulnerable population and highlights essential elements to consider during the process such as disability, mental health, trauma, resilience, self-determination, culture, and how trauma impacts mental health. The chapter concludes with an example of creating a youth-centered plan, possible tools to use, and additional resources.

Health Systems Responsiveness in Addressing Indigenous Residents' Health and Mental Health Needs Following the 2016 Horse River Wildfire in Northern Alberta, Canada: Perspectives From Health Service Providers

Following the 2016 Horse River Wildfire in northern Alberta, the provincial health authority, the ministry of health, non-profit and charitable organizations, and regional community-based service agencies mobilized to address the growing health and mental health concerns among Indigenous residents and communities through the provision of services and supports. Among the communities and residents that experienced significant devastation and loss were First Nation and Métis residents in the region. Provincial and local funding was allocated to new recovery positions and to support pre-existing health and social programs. The objective of this research was to qualitatively describe the health systems response to the health impacts following the wildfire from the perspective of service providers who were directly responsible for delivering or organizing health and mental wellness services and supports to Indigenous residents. Semi-structured qualitative interviews were conducted with 15 Indigenous and 10 non-Indigenous service providers from the Regional Municipality of Wood Buffalo (RMWB). Interviews were transcribed verbatim and a constant comparative analysis method was used to identify themes. Following service provider interviews, a supplemental document review was completed to provide background and context for the qualitative findings from interviews. The document review allowed for a better understanding of the health systems response at a systems level following the wildfire. Triangulation of semi-structured interviews and organization report documents confirmed our findings. The conceptual framework by Mirzoev and Kane for understanding health systems responsiveness guided our data interpretation. Our findings were divided into three themes (1) service provision in response to Indigenous mental health concerns (2) gaps in Indigenous health-related services post-wildfire and (3) adopting a health equity lens in post-disaster recovery. The knowledge gained from this research can help inform future emergency management and assist policy and decision makers with culturally safe and responsive recovery planning. Future recovery and response efforts should consider identifying and addressing underlying health, mental health, and emotional concerns in order to be more effective in assisting with healing for Indigenous communities following a public health emergency such as a wildfire disaster.

Caregiving During COVID-19: A Multi-State Qualitative Study of Family Caregiver Experiences and Decision Making

COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Using purposive sampling, 63 family caregivers across eight states participated in open-ended qualitative interviews (2019-2020), until thematic saturation was reached. Questions broadly examined caregivers’ experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and supports expenditures. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers also displayed flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care tools such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Given the persistent challenges posed by COVID-19, long-term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. There is a need to expand telemedicine and other remote healthcare tools, while adapting these technologies to the needs of families. Also, procedures are needed for safe pathways to utilize HCBS and nursing care during a pandemic including communication supports, sufficient PPE, increased staffing, and utilization of evidence-based protocols.

Ohio's Large Scale Experiment on Integrated Care: Results and Implications for Long-Term Services Reform

Implemented through five health plans, Ohio’s MyCare demonstration began in 2014 and was designed to coordinate primary, acute care, behavioral health and long-term services in the major urban areas of the state. Individuals who are dually eligible for both Medicaid and Medicare and who reside in specified geographic regions must enroll into a managed MyCare plan. MyCare beneficiaries are assigned to two primary categories: community well and those needing long-term services and supports (LTSS). Individuals receiving the integrated MyCare intervention were expected to have lower acute care hospitalizations, lower long-term nursing home use, better longevity and lower overall health and long-term care costs. Using a propensity score matching design, the evaluation compared MyCare enrollees to comparison group members in non-MyCare counties of the state, using Medicaid and Medicare claims data. The 120,000 MyCare program participants represented about half of the dual eligible individuals in the state.

State Medicaid Policy and LTC: A Multi-State Qualitative Study of Policy Influence on Caregiver Experiences

This study focuses on long-term care (LTC) state Medicaid policy and its impact on caregiver decisions and experiences. It examines respondents’ general knowledge of LTC state policies and services, challenges with navigating LTC policies and services, and decision-making pathways based on these factors. Using purposive sampling, 63 family caregivers across eight states participated in open-ended qualitative interviews (2019-2020) until thematic saturation was reached. Questions broadly examined caregivers’ experiences and decisions, focusing on decisions made around type of care setting and experiences with LTC state policy. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and support expenditures. While LTC policies and services vary significantly by state, we identified many parallels in caregiver experiences and perceptions across states, as respondents often lacked specific knowledge about LTC policies and services and how to access them. Overarching themes include LTC policy navigation challenges, distrust in state-funded LTC services and supports, and moral expectations of caregiving. To manage these challenges, caregivers employed coping strategies such utilizing informal support networks, hiring care coordination assistance, and “stretching things thin” to fill the policy and service gaps. Study findings highlight potential strategies to improve LTC services across states. There is a need to improve community trust with state services by employing transparent regulatory and evaluation procedures for LTC. Wider access to case management may improve communication and knowledge of available services to maximize benefit from HCBS expansions.

Findings From RAISE Act Research: Family Caregiver Priorities

To understand the needs and policy priorities of family caregivers, the Advisory Council commissioned research: first, through a request for information (RFI) in the Federal Register, which garnered roughly 1600 responses. Qualitative analysis revealed that family caregivers have diverse needs spanning their financial security as well as their needs for caregiver-focused supports; recommendations were similarly diverse, including requests for caregiver pay, improved access to respite, and other major policy changes. These findings fed into 12 focus groups focusing on diverse populations of caregivers, yielding more depth around caregiver priorities. Six stakeholder listening sessions built on these results, aiming to develop concrete suggestions for a national caregiver strategy – a key outcome of the Advisory Council. Such strategies ranged from a major publicity campaign creating awareness of family caregivers, to suggestions on implementing caregiver assessments, to more ambitious goals such as improved financing for long term services and supports more broadly.