A core competency of rehabilitation nurses is to provide family-centered care, which consists of including patients and their families in goal setting and decision-making about preferences for care and preparing them for the transition home. However, inherent in many healthcare systems are processes that often exclude or only minimally include families in these activities. For example, provider rounds, team meetings, caregiver training, and discharge planning often occur during the week days when family members cannot be present or have to adjust work and other responsibilities to attend these activities. Furthermore, the family is often viewed as a resource for the patient rather than an entity who has their own needs, concerns, and challenges in assuming postdischarge care. This can result in family caregivers feeling marginalized, overwhelmed, and poorly prepared to assume caregiving responsibilities upon discharge to home. Poor caregiver preparation leads to feelings of being abandoned, isolated, and alone, which can, in turn, lead to poorer caregiver and patient outcomes. Including family members in as many aspects of the patient's care as possible during inpatient care and being flexible when addressing family needs are critical, often missing components of a family-centered approach to care. One of the most important components is evaluating gaps in caregiver readiness and tailoring family care plans to better prepare caregivers during the inpatient stay to facilitate a successful discharge and to optimize patient and caregiver outcomes in the long term.

Assessing and addressing the needs of family caregivers have become national priorities. In 2016, the National Academies of Sciences, Engineering, and Medicine published a report on family caregiving calling for local, state, and the federal government to address the health, economic, and social issues related to family caregiving (National Academies of Sciences, Engineering, and Medicine, 2016). In 2018, the U.S. Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiver Act, establishing a Family Caregiving Advisory Council (Administration for Community Living, 2020). The Centers for Disease Control and Prevention (2019), the Association of Retired Persons (Reinhard et al., 2019), and the American Academy of Nursing (Perez et al., 2018) have all called for an increased emphasis on addressing the needs of family caregivers, to include conducting a comprehensive assessment to identify gaps in preparation and changing caregiver needs across the care trajectory, and implementing interventions tailored to address specific needs.

With support of funding from the Rehabilitation Nursing Foundation, we developed and validated a tool, the Preparedness Assessment for the Transition Home (PATH), in an effort to address this gap in caregiver preparation. The PATH is theoretically based in the improving stroke caregiver readiness model (Lutz et al., 2017) and was initially validated with caregivers of stroke patients in inpatient rehabilitation facilities (PATH-s) (Camicia et al., 2020; Camicia, Lutz, Joseph et al., 2021). The 25-item tool is self-administered and uses a 4-point scale from 1 (not prepared) to 4 (well prepared). Completing the PATH-s during the inpatient rehabilitation facility stay can also help caregivers identify potential concerns they had not thought about and cue them to discuss issues and concerns with the healthcare team (Camicia, Lutz, Harvath, & Joseph, 2021). The PATH-s is available, with a corresponding webinar, on the Association of Rehabilitation Nurses website (http://rehabnurse.org/pathtool). More recently, we have validated the PATH with the general rehabilitation population. We are also in the process of validating a short version of the tool, the PATH-7, to be implemented during the acute care hospital stay. These instruments can provide guidance to rehabilitation and other nurses about the specific gaps that need to be addressed to help optimize the transition from inpatient care to home. Rehabilitation nurses, case managers, and members of the interprofessional team can use the results of the assessment at the individual item level to better tailor care plans to the specific needs of the family unit (Camicia, Laslo, & Lutz, 2021).

Once needs are assessed, the rehabilitation nurse can facilitate a coordinated team-based approach to addressing specific gaps that are identified. For example, if a caregiver indicates that they have little or no understanding about the patient's expected recovery over the next 6 months, the physician can be notified to spend time clarifying this. Additional caregiver training with education on nursing treatments, bowel and bladder care, skin care, and other activities may be required for the caregiver who indicates that they understand nothing or a little about what assistance the patient will need with personal care when they go home. Resources to recruit help, such as http://CaringBridge.com and http://SignUpGenius.com, can be shared when the caregiver indicates they have few or no family and/or friends who are available to provide help with the patient's personal care or instrumental activities of daily living, or other roles and responsibilities. Caregivers who report some or significant conflict in their relationship with the patient can be referred to counseling, faith-based services, and other resources to build mutuality.

In addition to preparing caregivers for the anticipated responsibilities of the impending discharge, it is also critical that rehabilitation nurses maintain up-to-date networks of community resources for patients and families. These networks are more than a list of existing resources. Rather, rehabilitation nurses and case managers should endeavor to make meaningful connections with relevant community-based organizations so that when a family needs a particular resource, the nurse can facilitate the family's connection to that specific resource, providing a seamless transition from inpatient to community-based care. Giving patients and families a long list of possible community resources for them to figure out after discharge can lead them to feeling more overwhelmed and hopeless in their situation once they get home.

Patients who experience a disabling illness often need the help of family members for a successful discharge and for long term reintegration into the community. However, the specific needs and concerns of family members who are responsible for assuming the caregiving role are often not adequately evaluated or addressed during the inpatient stay or monitored at regular intervals after discharge. This can leave the family unit feeling bereft and alone once they return home. Many of these family members struggle, trying to cobble together resources and supports to help them integrate the new caregiver role into the existing responsibilities, leading to poorer outcomes.

Rehabilitation nurses are uniquely positioned to minimize these negative experiences by using their training and skills to facilitate the transition home to optimize patient and caregiver outcomes. To do this. we must implement the appropriate caregiver assessment tools during the rehabilitation stay so that we can anticipate the family's needs and provide real solutions and connections to resources and supports to help address those needs. We can also advocate for community-based supports to continue to evaluate and address caregiver needs throughout the course of caregiving. As members of the Association of Rehabilitation Nurses, we should be the leaders in shifting the focus of care from being patient-centric and seeing the caregiver as a resource to the patient to being family-centric and understanding the interconnectedness between family caregiver and patient needs, with a focus on improving outcomes for the family unit throughout the care trajectory.

Barbara J. Lutz, PhD, RN, CRRN, PHNA-BC, FAHA, FAAN

School of Nursing

University of North Carolina Wilmington

Wilmington, NC, USA

Michelle E. Camicia, PhD, RN, CRRN, CCM, NEA-BC, FAHA, FARN, FAAN

Kaiser Foundation Rehabilitation Center

Kaiser Permanente

Vallejo Medical Center

Vallejo, CA, USA

Conflict of Interest

The authors declare no conflict of interest.

References