Abstract 16: Home Care Workers Who Care for Adults With Heart Failure: A Community-Partnered Qualitative Study
Authors: Sterling Madeline R , Silva Ariel F , Shaw Amy L , Leung Peggy B , Tsui Emma K , Jones Christine D , Robbins Laura , Lee Ann , Escamilla Yanira , Sadler Frances , Wiggins Faith , Safford Monika M 
Published: March 2022

Background:
Paid home care workers (HCWs) represent one of the fastest growing sectors of the US workforce and healthcare industry. They are increasingly utilized by home-dwelling adults with heart failure (HF) for long term assistance and post-acute care. Yet, little is known about the perspectives of HCWs regarding their role in HF management and as part of the healthcare team.

Objective:
We sought to understand the perspectives of HCWs who take care of adults with HF as the foundation for the development of future intervention(s).

Methods:
We conducted 8 focus groups with English and Spanish-speaking HCWs at the 1199SEIU’s Home Care Industry Education Fund, a non-profit organization that oversees the training of 65,000 HCWs from 50 home care agencies across NYC. Eligibility criteria included taking care of a client with HF within the last year and being a HCW for at least 2 years. Purposeful sampling ensured equal representation of English and Spanish speaking HCWs. Focus groups were audio recorded and professionally transcribed. Data were organized using qualitative software and analyzed using grounded theory.

Results:
The 46 participants were mean age of 49 years (SD 10), 45 (98%) were female, 17 (37%) were Black, 25 (54%) were Hispanic, and 42 (91%) had at least a high school education. Participants had been HCWs for 16 years (8.4 SD) and spent 3.5 days per week (1.8 SD) with HF clients. Seven major themes emerged:
1. HF has an unpredictable disease course,
which is frightening to HCWs.
“One minute we’re watching TV and the next, he crumps.”
2. HCWs often assist with HF management
, although most have not received HF training.
“Over time, you pick up on the symptoms - the shortness of breath, the swollen legs. But, I’ve never received HF training.”
3. Communication is fragmented.
?No one at the agency picks up the phone, so I just take him to the emergency room instead.?
4. HCWs are ignored by the healthcare team.
“We’re with the clients all day, more than anyone else. So why aren’t we included in the conversation?”
5. Role definition is lacking
.
“The agency doesn’t make clear who we are or what we do. We aren’t just the help!”
6. Delicate family dynamics.
“I’m always in the middle and I can’t afford to lose my job.”
7. Social isolation and burnout.
“I’m with her all day, and she has Dementia too. It’s hard -- I’ve literally got nobody to talk to.”

Conclusions and Implications:
Our findings suggest that while HCWs are frequently involved in their clients’ HF management, most have not received formal HF training or resources. Additionally, despite spending so much time caring for their clients, they often feel invisible to healthcare providers. HF-specific training, as well as interventions that aim to integrate HCWs into the healthcare team, may improve HCWs’ HF knowledge and the quality of care delivered to adults with HF.