Patient, Caregiver, and Clinician Perspectives on Expectations for Home Healthcare after Discharge: A Qualitative Case Study

In case 8, although the patient describes knowing about the HHC PT involvement in her care, she expresses some unclear expectations about an HHC nurse after discharge.

Patient: As far as home health, I didn’t have a real …plan there at the hospital… They knew about (the HHC PT) coming once a week but as far as, you know, a nurse coming by to check on me, no.

However, the HHC PT describes feeling that the patient had clear expectations for HHC after discharge:

Interviewer: Can you reflect on whether she was prepared to receive home healthcare?

HHC PT: Yeah, she was ready.

Interviewer: …do you feel like she was prepared to know what to expect from you?

HHC PT: Yeah, but I think that comes from being a previous patient also.

Finally, in case 9, the patient describes clear expectations for HHC even though they were new to HHC:

Patient: …I knew what the PT was going to do and …I still need her because I’ve lost so much weight so she’s been really good, instrumental, at giving me exercises… Occupational therapist…she’s going to teach me how to shave, she’s going to teach me how to get ready for the day.

The HHC PT describes that although the patient knew the PT role, they reflect that the patient may have been somewhat unclear about expectations for the first HHC visit:

HHC PT: He knew all that it entailed with the exception of he didn’t really know what the first day was going to be like and the first day I don’t usually do treatment because it does take a long time to get all the paperwork signed, to do the evaluation and the fact that it takes two hours to do that note.

In this qualitative case study with HHC patients, caregivers, and clinicians, the participants described varying levels of expectation clarity for HHC after discharge. We triangulated across and within cases and found three cases with clear expectations and three cases with unclear expectations for HHC across perspectives. In three additional cases, we found discordant expectations across perspectives: patients and HHC clinician expectations differed in two of the cases and a patient and caregiver differed in one case. Of interest, in all three cases of clear expectations across perspectives, the patients and/or caregivers had prior HHC or healthcare work experience. In contrast, in the cases of two caregivers with unclear expectations, neither had prior HHC experience and both described expectations for assistance with personal care or housekeeping. Our findings suggest the need to improve caregiver engagement in HHC decision-making and care delivery, even in the time following the passage of the CARE Act. In addition, our findings suggest that patients and caregivers with unclear expectations for HHC may benefit from enhanced education about HHC services.

Prior studies in this area have included a qualitative study HHC patients, caregivers, and clinicians by Foust and colleagues in which multiple caregivers described finding out about the discharge from the patient or other caregivers, rather than being actively engaged by clinicians.⁶ In another recent qualitative study by Arbaje and colleagues, a majority of caregivers described “mismatched expectations” about HHC services, in which caregivers were unclear about their role compared with the HHC role in caring for the patient.⁹ Of interest, HHC clinicians in the Arbaje study described one of their key tasks to be “expectation management” for receipt of HHC services.⁹ In our study, the caregivers who described unclear expectations were not able to be present for the first HHC visit, which may have been a missed opportunity for the HHC clinician to clarify and manage expectations. Overall, findings from each of these studies support that consistent engagement and education from the hospital and HHC clinicians are needed to prepare patients and caregivers to know what to expect from HHC.

When caregivers have unclear expectations for HHC, they could be expressing the need for more support after hospital discharge, which suggests an active role for hospital teams to assess and address additional support needs with the patients and caregivers. For example, if the patient or caregiver request additional personal care services, a home health aide could help to reduce caregiver burden and improve the support network for the patient. In a prior study in which patients were asked what would help them to make informed decisions about postacute care options, the patients described wanting to receive practical information that could describe how it would apply to their specific situation and perceived needs.¹⁸ To provide this for patients and caregivers, it would follow that hospitals could provide information about skilled HHC nursing and therapies and information about services that could meet additional needs, such as home health aides.

In the context of the CARE Act, in which hospitals are encouraged to increase family caregiver engagement to prepare for discharge, findings from this and other studies suggest an opportunity to improve caregiver partnership in HHC transitions. As a result of this work, we recommend intentionally engaging and including caregivers in addition to patients in both the hospital and HHC settings to clarify expectations. Steps to clarify expectations with both patients and caregivers should include the following: (1) providing education and clear expectations for HHC through verbal interactions and written materials, and (2) assessing and addressing additional needs (eg, personal care) that patients and caregivers may have. To support these efforts, multidisciplinary teams could use previously studied interventions and tools for guidance as they engage caregivers throughout care transitions processes.^10,19

Limitations of this study include that it was a small qualitative case study of patients, caregivers, and HHC clinicians from one medical unit at one academic medical center. Most patients in this study had Medicare insurance, were 65 years and older, white, and female. A recent analysis of Medicare HHC users found that 63% were female and 75% were white, which shows that females were overrepresented in our study.^1,2,11 The perspective of Black and non-English speaking patients are missing from our study. Finally, we only interviewed individuals in three roles of complex transitions to HHC, and there are likely many additional perspectives on each of these transitions, which could provide additional insights. Results are not generalizable or transferable beyond this context.

In conclusion, to improve care transitions for HHC patients and their caregivers, emphasizing engagement of caregivers is key to ensure that they are educated about HHC, provided with additional support as needed, and included in initial HHC visits once the patients are at home. Even though patients and caregivers with prior HHC experience often had clear expectations for HHC, a strategy to uniformly engage caregivers across a range of experience can ensure caregivers have all the information and support needed to optimize care transitions to HHC.