Family Advocacy for Residents in Nursing Homes During the COVID-19 Pandemic

Abstract To protect one of the most vulnerable populations from COVID-19, nursing homes enacted and enforced visiting restrictions and other measures to limit the spread of this communicable disease. Family members, many of whom are former caregivers, were suddenly cut off from nursing home residents, and struggled to maintain connection with their loved ones residing in nursing homes. The purpose of this study was to describe the experiences of family members of residents in nursing homes in advocating for residents and themselves during a time of uncertainty and many challenges. This study used a qualitative descriptive approach to conduct individual interviews. Ten family members of residents of two nursing homes in a Northeastern state were interviewed by phone or videoconference using a semi-structured guide. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s Reflexive Thematic Analysis. Family members expressed concerns for the lockdown’s impact on residents’ psychosocial wellbeing in addition to the potential physical dangers of COVID-19. They explored creative means of meeting needs for information and interaction, but often felt that these efforts fell short of replicating the connectedness of in-person visits. Family members identified multiple missed opportunities for involvement in care, and voiced willingness to comply with infection prevention guidelines, such as maintaining distance, to be present with residents. Our findings indicate that family members advocated for residents’ interests to ensure quality care. Future research and policy should consider family members as a potential resource for providing care and companionship during times of crisis.

1. Mälardalen University / Dalarna University, Västerås,Vastmanlands Lan,Sweden,2. Dalarna University,Falun,Dalarnas Lan,Sweden,3. Mälardalen University,Västerås,Vastmanlands Lan,Sweden Even before the Covid-19 pandemic, spouse carers of persons with dementia (PwDs) found their care responsibilities overwhelming and had little time to focus on their own lives.To minimize the risk of being infected with Covid-19, older persons are recommended to self-isolate in their homes, while formal support such as respite care and day care centers are withdrawn.This study involved semi-structured interviews with 24 spouse carers of community-living PwDs, with the aim of describing their situation during the pandemic.The interviews were analyzed with qualitative content analysis.Results revealed that they commonly declined help because of the perceived risk of their spouse being infected with Covid-19 and thus also possibly causing their death.They described feelings of being trapped in their situation, as they experienced having no choice than take all responsibility for the care of their partner themselves, with cost of being unable to take necessary breaks.This was described as making an already strained situation almost unbearable, which led to conflicts with their partner.However, the spouses also described positive aspects due to strategic changes in health and social care provision to prevent the spread of the virus, such as greater staff continuity in home care services, and patient transportation service.These made the PwD less stressed and influenced their everyday life positively.It could be concluded that the extent burden during the Covid-19 pandemic calls for extensive development of tailored support to better tackle the rapid changes that can occur in a society.

FAMILY ADVOCACY FOR RESIDENTS IN NURSING HOMES DURING THE COVID-19 PANDEMIC
Cristina de Rosa, Yanjun ZHou, Amy Lyons, and Yu-Ping Chang, University at Buffalo, Buffalo, New York, United States To protect one of the most vulnerable populations from COVID-19, nursing homes enacted and enforced visiting restrictions and other measures to limit the spread of this communicable disease.Family members, many of whom are former caregivers, were suddenly cut off from nursing home residents, and struggled to maintain connection with their loved ones residing in nursing homes.The purpose of this study was to describe the experiences of family members of residents in nursing homes in advocating for residents and themselves during a time of uncertainty and many challenges.This study used a qualitative descriptive approach to conduct individual interviews.Ten family members of residents of two nursing homes in a Northeastern state were interviewed by phone or videoconference using a semi-structured guide.Interviews were transcribed verbatim and analyzed using Braun and Clarke's Reflexive Thematic Analysis.Family members expressed concerns for the lockdown's impact on residents' psychosocial wellbeing in addition to the potential physical dangers of COVID-19.They explored creative means of meeting needs for information and interaction, but often felt that these efforts fell short of replicating the connectedness of in-person visits.Family members identified multiple missed opportunities for involvement in care, and voiced willingness to comply with infection prevention guidelines, such as maintaining distance, to be present with residents.Our findings indicate that family members advocated for residents' interests to ensure quality care.Future research and policy should consider family members as a potential resource for providing care and companionship during times of crisis.).Of 9 caregivers, 7 were female, 5 children, and 3 spouses.The majority (67%) of caregivers were extremely involved in medication management.Mean FCG Hassle Score =17.1 (SE 5.9; range 2-58), and differed between spouses (mean =5 [SE 1.7; range 2-8]) and children (mean =31.4 [SE 9.53;).The highest burden concern was recognizing medication side effects, followed by feeling comfortable making medication decisions, arguing with the care-recipient about when to take medications, knowing why a medication is being given and whether it is effective, and knowing when to hold, increase, decrease a dose or discontinue the medication.CONCLUSION FCGs of older adults in home hospice report different levels of medication administration hassle depending on their relationship to the patient.The most bothersome concern is recognizing medication side effects.

FRAUDULENT DATA DETECTION AND PREVENTION WITHIN THE NATIONAL CAREGIVER SURVEY
Jada Jackson, 1 Jessica Lipchin, 1 Rachel Zhang, 2 and Sheria Robinson-Lane, 1 1.University of Michigan School of Nursing,Ann Arbor,Michigan,United States,2

. College of Engineering, University of Michigan Ann Arbor, University of Michigan Ann Arbor, Michigan, United States
The National Caregiver Survey is an online, incentivized survey that aims to gather information about the health and coping strategies used by Black family caregivers of persons with dementia.The survey data will help elucidate the relationships between coping, health, and adaptation to family caregiving and facilitate the development of culturally responsive caregiver support programming.Virtually distributing this survey made it cost-effective, easily accessible, and quick to produce usable data.The online format also helped the team reach caregivers from across the nation, as well as keep participants safe during the COVID-19 pandemic.Unfortunately, because online surveys are advertised and administered digitally, they become targets for hacking, especially when the surveys are incentivized.The hacking attempts are executed through digital survey bots and threaten the integrity of the collected data.These corrupt responses also increase study costs by falsely rewarding the hackers for their survey responses and research team time in the investigation, detection, and removal of fraudulent responses.To detect potential bots, a reCAPTCHA bot system was incorporated into the survey, and survey questions were formatted specifically to thwart hacking attempts.Finally, data were cleaned to remove illogical, inconsistent, and duplicative surveys.Findings from this work may help researchers improve online survey design and data collection methods to provide greater confidence in conclusions drawn from virtually surveyed data.

GENDER DIFFERENCES IN THE LINK BETWEEN INFORMAL CAREGIVING AND SUBJECTIVE WELL-BEING
Aeri Kim, and Kyungmi Woo, Seoul National University, Seoul, Seoul-t'ukpyolsi, Republic of Korea Despite existing evidence on the negative association between informal caregiving and caregiver's well-being, three important knowledge gaps remain.First, the link warrants further scrutiny due to the possibility of individual heterogeneity.Second, less is known about how informal caregiving is related to caregiver's well-being.Third, there is little consensus in the literature regarding whether caregiver's gender matters.This study fills these gaps in the literature.Using seven waves of a large-scale, nationally representative longitudinal study of older adults in Korea between 2006 and 2018, this study employed generalized estimating equations models with a lagged dependent variable as well as fixed effects models.Findings from both models revealed that informal caregiving is negatively associated with subjective well-being, and this association is largely driven by female caregivers.To explore potential mechanisms undergirding this association, we examined the mediating roles of a number of health behaviors.We found that engaging in informal caregiving is associated with a reduction in regular exercise.Results from mediation analyses, however, suggested that regular exercise explains only a moderate amount of the observed association (12% for health-related life satisfaction and 8% for self-rated health).While informal caregiving is obviously a rewarding role, it poses a serious threat to caregiver's well-being.Findings of this study on gender differences in the well-being consequences of informal caregiving lend support to taking a gender-conscious approach in programs aiming to improve the well-being of informal caregivers.

HOW FREQUENTLY ARE CAREGIVERS INCLUDED IN PATIENT EDUCATION FOR ONCOLOGY PATIENTS?
Beth Fields, and Anne Mueller, University of Wisconsin-Madison, Madison, Wisconsin, United States Jennifer Tjia, 1 Margaret Clayton, 2 Jennifer Smith, 2 Olivia Wood, 3 Susan Hurley, 3 Geraldine Puerto,4VennesaDuodu, 4and Susan DeSanto-Madeya, 5 1.UMass Chan Medical School, University of Massachusetts Medical School, Massachusetts, United States, 2. University of Utah, The University of Utah, Utah, United States, 3. Care Dimensions, Care Dimensions, Massachusetts, United States, 4. UMass Medical School, UMass Medical School, Massachusetts, United States, 5. University of Rhode Island, University of Rhode Island, Rhode Island, United States OBJECTIVE To characterize FCG burden of medication administration for older adults in home hospice.METHODS Pilot clinical trial of a hospice-staff level communication and medication review program to facilitate goal-concordant prescribing, including deprescribing, for older adults in home hospice.Patients newly admitted to hospice were eligible if >=65 years, prescribed >= 5 medications and had a FCG.Exclusion criteria included being non-English speaking or having a Palliative Performance Score<40.Measurements include 24-item FCG Medication Administration Hassle Scale (range 0-96) at hospice admission and at 2-, 4-, 6-, 8-weeks and monthly until death.Descriptive statistics characterize baseline FCG Hassle score.RESULTS In this actively recruiting study, n=9 patient-caregiver dyads are enrolled to date.Mean patient age is 80.6 years (range 69-101