Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 Pandemic: A Qualitative Analysis | Geriatrics | JAMA Internal Medicine | JAMA Network
[Skip to Navigation]
Access to paid content on this site is currently suspended due to excessive activity being detected from your IP address Please contact the publisher to request reinstatement.
Goldstein  J, McKinley  J. Coronavirus in N.Y.: Manhattan woman is first confirmed case in state. New York Times. March 1 2020. Updated March 5, 2020. Accessed March 10, 2020. https://www.nytimes.com/2020/03/01/nyregion/new-york-coronvirus-confirmed.html
Centers for Disease Control and Prevention. Coronavirus disease 2019 (COVID-19): cases in the US. Updated July 23, 2020. Accessed May 1, 2020. https://www.cdc.gov/coronavirus/2019-ncov/cases-updates/cases-in-us.html
Bercovitz  A, Moss  A, Sengupta  M, Park-Lee  EY, Jones  A, Harris-Kojetin  LD.  An overview of home health aides: United States, 2007.   Natl Health Stat Report. 2011;(34):1-31.PubMedGoogle Scholar
US Bureau of Labor Statistics. Occupational employment statistics, May 2018. Updated March 29, 2019. Accessed March 10, 2019. https://www.bls.gov/oes/2018/may/oes311011.htm
PHI. US home care workers: key facts. Accessed September 26, 2017. https://phinational.org/sites/phinational.org/files/phi-home-care-workers-key-facts.pdf
Reckrey  JM, Tsui  EK, Morrison  RS,  et al.  Beyond functional support: the range of health-related tasks performed in the home by paid caregivers In New York.   Health Aff (Millwood). 2019;38(6):927-933. doi:10.1377/hlthaff.2019.00004 PubMedGoogle ScholarCrossref
Sterling  MR, Silva  AF, Leung  PBK,  et al.  “It’s like they forget that the word ‘health’ is in ‘home health aide’”: understanding the perspectives of home care workers who care for adults with heart failure.   J Am Heart Assoc. 2018;7(23):e010134. doi:10.1161/JAHA.118.010134 PubMedGoogle Scholar
Neysmith  SM, Aronson  J.  Working conditions in home care: negotiating race and class boundaries in gendered work.   Int J Health Serv. 1997;27(3):479-499. doi:10.2190/3YHC-7ET5-5022-8F6LPubMedGoogle ScholarCrossref
Franzosa  E, Tsui  EK, Baron  S.  Home health aides’ perceptions of quality care: goals, challenges, and implications for a rapidly changing industry.   New Solut. 2018;27(4):629-647. doi:10.1177/1048291117740818PubMedGoogle ScholarCrossref
Landes  SD, Weng  SS.  Racial-ethnic differences in turnover intent among home health aides.   J Appl Gerontol. 2020;39(5):490-501. doi:10.1177/0733464819827806PubMedGoogle ScholarCrossref
Stone  R, Wilhelm  J, Bishop  CE, Bryant  NS, Hermer  L, Squillace  MR.  Predictors of intent to leave the job among home health workers: analysis of the National Home Health Aide Survey.   Gerontologist. 2017;57(5):890-899. doi:10.1093/geront/gnw075PubMedGoogle Scholar
1199SEIU: United Healthcare Workers East. About 1199SEIU. Accessed September 1, 2017.https://www.1199seiu.org/
1199SEIU Funds Home Care Industry Education. About us. Accessed April 25, 2017. https://www.1199seiuhomecareed.org/about/.
Palinkas  LA, Horwitz  SM, Green  CA, Wisdom  JP, Duan  N, Hoagwood  K.  Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.   Adm Policy Ment Health. 2015;42(5):533-544. doi:10.1007/s10488-013-0528-y PubMedGoogle ScholarCrossref
Tong  A, Sainsbury  P, Craig  J.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.   Int J Qual Health Care. 2007;19(6):349-357. doi:10.1093/intqhc/mzm042PubMedGoogle ScholarCrossref
Zoom. Home page. Accessed July 15, 2020. https://zoom.us
Sterling  MR, Dell  N, Piantella  B,  et al.  Understanding the workflow of home health care for patients with heart failure: challenges and opportunities.   J Gen Intern Med. 2020;35(6):1721-1729. doi:10.1007/s11606-020-05675-8 PubMedGoogle ScholarCrossref
Sterling  MR, Dell  N, Tseng  E,  et al.  Home care workers caring for adults with heart failure need better access to training and technology: a role for implementation science.   J Clin Transl Sci. 2020;4(3):224-228. doi:10.1017/cts.2020.36 PubMedGoogle ScholarCrossref
Gershon  RR, Magda  LA, Canton  AN,  et al.  Pandemic-related ability and willingness in home healthcare workers.   Am J Disaster Med. 2010;5(1):15-26. doi:10.5055/ajdm.2010.0002 PubMedGoogle ScholarCrossref
Baron  S, McPhaul  K, Phillips  S, Gershon  R, Lipscomb  J.  Protecting home health care workers: a challenge to pandemic influenza preparedness planning.   Am J Public Health. 2009;99(suppl 2):S301-S307. doi:10.2105/AJPH.2008.157339 PubMedGoogle ScholarCrossref
Ives  J, Greenfield  S, Parry  JM,  et al.  Healthcare workers’ attitudes to working during pandemic influenza: a qualitative study.   BMC Public Health. 2009;9:56. doi:10.1186/1471-2458-9-56 PubMedGoogle ScholarCrossref
Foley  G, Timonen  V.  Using grounded theory method to capture and analyze health care experiences.   Health Serv Res. 2015;50(4):1195-1210. doi:10.1111/1475-6773.12275 PubMedGoogle ScholarCrossref
Merriam  SB.  Qualitative Research: A Guide To Design And Implementation. Jossey-Bass; 2009.
GitHub, Inc. Qual-code visualizer. Accessed May 5, 2020. https://github.com/emtseng/qual-code-visualizer
Charmaz  K.  Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications Inc; 2006.
Eaves  YD.  A synthesis technique for grounded theory data analysis.   J Adv Nurs. 2001;35(5):654-663. doi:10.1046/j.1365-2648.2001.01897.x PubMedGoogle ScholarCrossref
Denton  M, Zeytinoglu  IU, Davies  S, Lian  J.  Job stress and job dissatisfaction of home care workers in the context of health care restructuring.   Int J Health Serv. 2002;32(2):327-357. doi:10.2190/VYN8-6NKY-RKUM-L0XWPubMedGoogle ScholarCrossref
Shotwell  JL, Wool  E, Kozikowski  A,  et al.  “We just get paid for 12 hours a day, but we work 24”: home health aide restrictions and work related stress.   BMC Health Serv Res. 2019;19(1):907. doi:10.1186/s12913-019-4664-2 PubMedGoogle ScholarCrossref
1199SEIU Funds: United Healthcare Workers East. Training and employment: COVID-19. Published 2020. Accessed April 18, 2020. https://www.1199seiubenefits.org/funds-and-services/training-and-employment/
Livingston  E, Desai  A, Berkwits  M.  Sourcing personal protective equipment during the COVID-19 pandemic.   JAMA. Published onlinen March 28, 2020. doi:10.1001/jama.2020.5317 PubMedGoogle Scholar
Kamerow  D.  Covid-19: the crisis of personal protective equipment in the US.   BMJ. 2020;369:m1367. doi:10.1136/bmj.m1367 PubMedGoogle ScholarCrossref
Home Care Association of New York State. COVID-19 survey results: statewide home care, hospice & MLTC impacts. Published March 18, 2020. Accessed May 4, 2020. https://hca-nys.org/wp-content/uploads/2020/03/HCA-Memo-Statewide-COVID-19-Survey-Results.pdf
The first rounds of coronavirus relief didn't include primary caregivers: these lawmakers want to change that. Time. Published April 30, 2020. Accessed May 1, 2020. https://time.com/5830044/coronavirus-relief-primary-caregivers/
Limit 200 characters
Limit 25 characters
Conflicts of Interest Disclosure

Identify all potential conflicts of interest that might be relevant to your comment.

Conflicts of interest comprise financial interests, activities, and relationships within the past 3 years including but not limited to employment, affiliation, grants or funding, consultancies, honoraria or payment, speaker's bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued.

Err on the side of full disclosure.

If you have no conflicts of interest, check "No potential conflicts of interest" in the box below. The information will be posted with your response.

Not all submitted comments are published. Please see our commenting policy for details.

Limit 140 characters
Limit 3600 characters or approximately 600 words
    Original Investigation
    August 4, 2020

    Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 Pandemic: A Qualitative Analysis

    Author Affiliations
    • 1Division of General Internal Medicine, Department of Medicine, Weill Cornell Medicine, New York, New York
    • 2The Jacobs Institute, Cornell Tech, New York, New York
    • 3Cornell University, Ithaca, New York
    • 4Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York
    JAMA Intern Med. 2020;180(11):1453-1459. doi:10.1001/jamainternmed.2020.3930
    Key Points

    Question  What are the experiences of home health care workers caring for older adults and for patients with chronic illnesses during the coronavirus disease 2019 (COVID-19) pandemic?

    Findings  In this qualitative study of 33 home health care workers employed by 24 unique home care agencies across New York City, participants reported that they were at heightened risk for contracting and transmitting COVID-19. Despite providing integral care to vulnerable patients, home health care workers felt inadequately supported and generally invisible.

    Meaning  During the COVID-19 pandemic, home health care workers experienced challenges that increased their vulnerability as a workforce.


    Importance  Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 (COVID-19) who remain at home. These workers are mostly middle-aged women and racial/ethnic minorities who typically earn low wages. Despite being integral to patient care, these workers are often neglected by the medical community and society at large; thus, developing a health care system capable of addressing the COVID-19 crisis and future pandemics requires a better understanding of the experiences of home health care workers.

    Objective  To understand the experiences of home health care workers caring for patients in New York City during the COVID-19 pandemic.

    Design, Setting, and Participants  From March to April 2020, a qualitative study with 1-to-1 semistructured interviews of 33 home health care workers in New York City was conducted in partnership with the 1199SEIU Home Care Industry Education Fund, a benefit fund of the 1199 Service Employees International Union United Healthcare Workers East, the largest health care union in the US. Purposeful sampling was used to identify and recruit home health care workers.

    Main Outcomes and Measures  Audio-recorded interviews were professionally transcribed and analyzed using grounded theory. Major themes and subthemes were identified.

    Results  In total, 33 home health care workers employed by 24 unique home care agencies across the 5 boroughs of New York City participated. Participants had a mean (SD) age of 47.6 (14.0) years, 32 (97%) were women, 21 (64%) were Black participants, and 6 (18%) were Hispanic participants. Five major themes emerged: home health care workers (1) were on the front lines of the COVID-19 pandemic but felt invisible; (2) reported a heightened risk for virus transmission; (3) received varying amounts of information, supplies, and training from their home care agencies; (4) relied on nonagency alternatives for support, including information and supplies; and (5) were forced to make difficult trade-offs in their work and personal lives.

    Conclusions and Relevance  In this qualitative analysis, home health care workers reported providing frontline essential care, often at personal risk, during the COVID-19 pandemic. They experienced challenges that exacerbated the inequities they face as a marginalized workforce. Interventions and policies to better support these frontline health care professionals are urgently needed.