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

Abstract 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.

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

Innovation in Aging ◽

10.1093/geroni/igab046.398 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 105-105

Author(s):

Tonie Sadler ◽

Kevin Yan ◽

Daniel Brauner ◽

Harold Pollack ◽

R Tamara Konetzka

Keyword(s):

Qualitative Interviews ◽

Community Based ◽

Specific Knowledge ◽

Term Care ◽

Evaluation Procedures ◽

Medicaid Policy ◽

Caregiver Experiences ◽

Community Trust ◽

Services And Supports

Abstract 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.

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