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J Cyst Fibros ; 20 Suppl 3: 49-54, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587337


BACKGROUND: Due to the COVID-19 pandemic, there was an uptake of telehealth in cystic fibrosis care. Previous studies show disparities in telehealth use based on socioeconomic status (SES). We aimed to: (1) understand telehealth use and perceptions and (2) identify the facilitators and barriers to telehealth use among people with CF and their families (PwCF) from diverse racial/ethnic and socioeconomic backgrounds. METHODS: We conducted an analysis of the 2020 Cystic Fibrosis State of Care surveys completed by PwCF (PFSoC), CF Care Programs (SoC1) and the CF Foundation Patient Registry (CFFPR). RESULTS: A total of 424 PwCF and 286 programs responded to the PFSoC and SoC1. Among PwCF, 90% self-identified as White, 6% as Hispanic/Latino, and 2% as Black. Racial/ethnic minorities were less likely to have had a telehealth visit (p=.015). This difference was pronounced among the Hispanic/Latino population (p<.01). Telehealth use did not differ by health insurance and was similarly offered independent of financial status. Compared to PwCF who denied financial constraints, those who reported financial difficulties found telehealth more difficult to use (p=.018) and were less likely to think that their concerns (p=.010) or issues that mattered most to them (p=.020) were addressed during telehealth. Programs perceived lack of technology, language barriers, and home conditions as barriers to telehealth in vulnerable populations. CONCLUSION: PFSoC and SoC1 identified differences in telehealth use and care perceptions by ethnicity, race, and socioeconomic characteristics. Further studies are needed to understand how telehealth can change access to CF care in diverse subpopulations.

COVID-19 , Communication Barriers , Cystic Fibrosis , Minority Health , Telemedicine , COVID-19/epidemiology , COVID-19/prevention & control , Communicable Disease Control/methods , Cystic Fibrosis/economics , Cystic Fibrosis/ethnology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Financial Stress/ethnology , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Healthcare Disparities/ethnology , Healthcare Disparities/standards , Humans , Minority Health/ethnology , Minority Health/standards , Minority Health/statistics & numerical data , Needs Assessment , Organizational Innovation , SARS-CoV-2 , Socioeconomic Factors , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology , Vulnerable Populations/statistics & numerical data
Hastings Cent Rep ; 51(2): 16-21, 2021 Mar.
Article in English | MEDLINE | ID: covidwho-1173809


Harrowing stories reported in the media describe Covid-19 ravaging through families. This essay reports professional experiences of this phenomenon, family clustering, as encountered during the pandemic's spread across Southern California. We identify three ethical challenges following from it: Family clustering impedes shared decision-making by reducing available surrogate decision-makers for incapacitated patients, increases the emotional burdens of surrogate decision-makers, and exacerbates health disparities for and the suffering of people of color at increased likelihood of experiencing family clustering. We propose that, in response to these challenges, efforts in advance care planning be expanded, emotional support offered to surrogates and family members be increased, more robust state guidance be issued on ethical decision-making for unrepresented patients, ethics consultation be increased in the setting of conflict following from family clustering dynamics, and health care professionals pay more attention to systemic and personal racial biases and inequities that affect patient care and the surrogate experience.

Advance Care Planning , COVID-19/epidemiology , Family Health , Family/psychology , Minority Health , Patient Care , Advance Care Planning/ethics , Advance Care Planning/legislation & jurisprudence , California/epidemiology , Cluster Analysis , Decision Making, Shared , Family Health/ethics , Family Health/ethnology , Health Status Disparities , Humans , Minority Health/ethics , Minority Health/ethnology , Patient Care/ethics , Patient Care/psychology , SARS-CoV-2 , Social Support , Third-Party Consent/ethics