By Melinda Young

EXECUTIVE SUMMARY

A new study on the Preparedness Assessment for the Transition Home After Stroke (PATH-s) revealed what caregivers understand about patients’ disease and their own role.

  • More than one in five American adults serve in a caregiving role. This proportion is increasing.
  • An important part of case management might be to help caregivers with their part of the transition home and maintaining patients’ health.
  • Issues that could create barriers to optimal caregiving include the caregiver’s commitment and relationship strength to the patient, and the caregiver’s own health issues and other responsibilities.

Researchers developed a transition care tool that helps caregivers better understand their role and what is expected of them in supporting and caring for patients.

The results of a recent study showed that after completing the Preparedness Assessment for the Transition Home After Stroke (PATH-s), caregivers could accurately identify long-term implications of stroke and their role.1

PATH-s was developed from a model born of transitional care research, says Michelle Camicia, PhD, RN, FAAN, director of operations with the Kaiser Foundation Rehabilitation Center at Kaiser Permanente Vallejo (CA) Medical Center.

Developing the tool generated items that represented the Model of Caregiver Readiness, including the domains of caregiver/care recipient relationship, willingness to provide care, caregiver’s pre-existing health conditions, other responsibilities, experience, access to home and transportation, resources, emotional response, and ability to sustain the caregiver role.2

“There is substantial foundational research that tells us that caregivers feel overwhelmed with the transition home from the hospital,” Camicia says. “They feel unprepared for the role; they feel like an iceberg sent out to the ocean on their own.”

Fifty-three million people — more than one in five American adults — serve in a caregiving role, serving adults or children with special needs, according to a 2020 report from AARP.3

Unpaid caregiving is increasing while there are fewer potential family members available to provide help. This trend will continue as baby boomers age, the report notes.2

Caregivers often have unmet support needs. They worry about their ability to handle medications, urinary tract infections, and other problems that arise with caring for someone with chronic illnesses. “Assessing the caregiver helps the clinical outcomes of the care recipient,” Camicia says. “You have a competency for the significant role caregivers have when they’re transitioning.”

Assess Commitment, Capacity

Camicia and co-investigators worked on this model, the tool, and validation of the tool. “From the model of caregiver readiness, developed as theoretical framework from qualitative research, Barbara Lutz and I developed all the items on the PATH instrument in draft form,” Camicia explains. “From draft form, we went through a very robust process to refine and validate all of the questions in the PATH assessment tool.”

The tool includes 25 items to assess caregivers’ commitment and capacity for providing care. It is self-administered and can be used as a clinical assessment of caregivers to assess their readiness for the role.4

Helping caregivers is an important part of care transition and quality care throughout the continuum. “If we provide comprehensive care to patients with chronic illnesses and expect them to manage the illnesses when they are discharged, it goes beyond the doors of the hospital,” says Barbara Lutz, PhD, RN, CRRN, FAAN, McNeill distinguished professor at the University of North Carolina Wilmington School of Nursing. “It goes beyond doors of the hospital. We have to figure out how to better help these patients who transition. It can’t just be ‘Do you have the right meds? Are you taking the right blood pressure medication?’”

Commitment items include the strength of their relationship and the willingness of the caregiver to perform in a giving role, Camicia says. Capacity issues include the caregiver’s own health problems and other roles and responsibilities. Experience in caregiving, accessibility to transportation, and support (including financial resources) also are capacity issues.

“Support includes informal support, like people at their church, social group, or other affiliations,” Camicia says. “One question asks if they have any family or friends who are willing to provide direct care.”

Another question asks if people are available to help them with shopping, cooking, yardwork, and running errands. “It separates personal care from all the other ways somebody can help because some people are willing to do other things, but not personal care,” Camicia explains.

Look for Deeper Issues

The tool looks beyond just surface capacity issues. For instance, on transportation, the issue is more than just accessing a car or a bus. “If the care recipient uses a wheelchair, do they have wheelchair access or public transportation that accommodates a wheelchair,” Camicia says.

Home accessibility needs also depend on the patient and his or her environmental barriers. “Case managers can look into whether the person owns or rents their home, and if they rent, are they able to make modifications,” she explains. “If there are environmental barriers, there’s a question about financial resources to address those barriers. Does a person have the money to do what needs to be done, or do they have people who can volunteer to make the changes?”

In another paper, Camicia and co-investigators noted it is essential for providers to adequately assess caregivers’ needs and incorporate education, preparation, and support for the caregiver role during transitions to the community.5

“We found by their completing the assessment, it helps caregivers understand what they need to start thinking about,” Camicia says. “It triggers their anticipation of what they need to do, and it cues them to action to prepare for their role as a caregiver.”

As part of the instrument development process, researchers presented information to a small cohort of caregivers, asking them which format of response they preferred.3

“What caregivers unanimously chose was the first-person response,” Camicia says. “The first-person response includes the answers of ‘I have no understanding,’ ‘I have some understanding,’ ‘I have a lot of understanding,’ and ‘I understand a little.’”

Using first person in their answers helped them connect with their own experience as a caregiver. “This [told] them, ‘You’re an important person, and these questions are about you,’” Camicia says.

Create Targeted Interventions

Case managers can use the PATH-s tool to create interventions for caregivers. “When case managers receive the responses and if there is a response that indicates a caregiver needs an intervention, then they can develop a plan of care in response to that,” she explains. “They can give specific information of where we need to focus a case management intervention so there is an individualized plan of care to address the caregiver’s needs.”

The program is designed to suggest targeted interventions to address areas identified in the assessment. “We have a catalog of interventions that the case manager can choose from,” Camicia says. “Each item has a catalog of interventions to put in the plan of care.”

For example, the first question is, “Do you understand what to expect about recovery over the next six months?” If someone says, “I don’t know,” or “I have little or no understanding,” then the case manager can re-send information about stroke recovery, as well as written materials, to the caregiver. “They also can send a message to the primary care physician, asking them to spend more time talking about the prognosis of stroke with that patient,” she adds.

Another example involves a question about conflict in the caregiver-patient relationship. “If someone has a lot of conflict in their relationship, then we refer them to some counseling or provide some mutual building skills and activities to help improve the relationship,” Camicia says. “It’s really important [to know] that if you already have strains in a new caregiving relationship, it could be problematic.”

A third example involves one of the most commonly reported issues raised by caregivers: “I have many other roles and responsibilities other than the caregiving role.”

“One thing we’ve been doing very successfully is helping people with Caring Bridge and Sign-up Genius to get people to use a platform so they can send out to a support system,” Camicia says. “They can say, ‘Here’s the things I need help with.’”

Asking for help through a technology platform alleviates some of the social pressure involved in asking people for assistance. People can be encouraged to ask for simple things, like asking someone to stay with his or her family member for an hour a day so the caregiver can take a walk, or to pick up items from the grocery store.

“For people who have a lot of roles and responsibilities and are trying to manage so much in their lives and also have the caregiving role, using that platform can help,” she adds.

The study authors obtained comments from caregivers who had used PATH-s and found it often gave caregivers a feeling of mastery. “More than anything, it helps them process [information] by reading questions,” Camicia says. “They may think, ‘Yes, I’m doing better than I thought. I do know enough, and I do have the resources I need, and this is going to be OK.’”

It is important for case managers to reinforce the work of caregivers and to help them understand how to maintain their health and the relationship with the patient.

Ideally, the tool would be used to address caregivers’ needs and improve post-acute care management. Case managers help this process by addressing the caregiver’s needs, identified through the assessment, Camicia says.

REFERENCES

  1. Camicia M, Lutz BJ, Harvath TA, Joseph JG. Using the Preparedness Assessment for the Transition Home After Stroke instrument to identify stroke caregiver concerns predischarge: Uncertainty, anticipation, and cues to action. Rehabil Nurs 2021;46:33-42.
  2. Camicia M, Lutz BJ, Harvath T, et al. Development of an instrument to assess stroke caregivers’ readiness for the transition home. Rehabil Nurs 2020;45:287-298.
  3. Whiting CG, Reinhard S, Heinz PA, et al. 2020 Report: Caregiving in the U.S. Published by AARP Family Caregiving and the National Alliance for Caregiving. May 2020. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf?campaign_id=10&emc=edit_gn_20210316&instance_id=28138&nl=in-her-words&regi_id=43012034&segment_id=53556&te=1&user_id=dcf13f00af010f5aab24b0ea015a94e8
  4. Camicia M, Lutz B. PATH-s is a freely accessible, evidence-based tool designed to assess caregiver’s preparedness to transition stroke patients home. Association of Rehabilitation Nurses. 2021. https://rehabnurse.org/advance-your-practice/practice-tools/path-s-instrument