Running head: OCCUPATIONAL THERAPY AND STROKE CAREGIVING 1 Expanding Role in Preparing Stroke Caregivers for Patient Discharge Gabrielle E. Cutliffe Mary Ellen Young, PhD Emily Pugh MA, OTR/L, LHRM University of Florida
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 2 Introduction The l ife changing event of a stroke a ffects 775,000 U.S. citizens per year ( Benjamin et al. 2017). Stress associated with stroke caregiving presents cha llenges to rehabilitation and successful home transitions for the caregiver and for the patient Bec ause of caregiver strain due to daily stress, caregivers experience an increased risk of adverse health events (Hayes, Chapman, Young, & Rittman, 2009). Previous research done on this subject only addresses the initial event of the stroke and progress long after the patient and caregiver are released from rehabilitative care. This leaves a s ignificant gap in the information available on stroke recovery, particularly for the moment of discharge and transition into the home environment. Caregivers report feelings of anxiety and stress at th is loss of support and feel overwhelmed and underprepared to take on the caregiving role (Lutz et al. 2016 ). Previous research has documented a crisis of discharge following release from care due to loss of support systems and lack of appropriate prepa ration for caregivers (Lutz, Young, Cox, Martz, & Creasy, 2013). This crisis puts both caregiver and patient health at risk, as the mental and physical health of the caregiver is closely tied to patient outcome (Hayes, Ch apman, Young, & Rittmann, 2009 ) Ca regiving challenges post discharge include a lack of comprehensive educat ion for the caregiver (Smith, Lawrence, & Langhorne, 2004) mental and physical strain and lack of respite services, and injuries on caregiver due to the physical toll of caregiving ( Hays, Chapman, Young, & Rittman, 2009) This research addresses the crisis of discharge and how oc cupational therapy can help prepare the caregiver as they transition into life in the home environment B y conducting a preliminary survey of occupational therapists and occupational therapy assistants within the Southeast United States who were working with stroke patients we were able to find areas where occupational therapy could potentially be integrated into the process of transitioning t he caregivers into home life. Caregiver feelings about their level of preparation vary which indicates a need for comprehensive realistic education for caregivers prior to
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 3 discharge. Caregivers do not know what to expect on the return home and often h ave unique circumstances that are challenging to address with a single standard of practice. (White, Brady, Suce do, Motz, Sharp & Birnbaum, 2014 ). We found that occupational therapists felt that caregiver involvement was important and necessary for the pa tient's recovery and quality of life for both parties following the event of a stroke. But there were significant gaps in caregiver education, particularly in preparation before discharge and post discharge follow up and support. The aim of this study was to expand the practice of occupational therapy to improve caregiver readiness specifically for the moment of discharge and return home. B y expanding occupational evaluations beginning caregiver education and home preparation early, sharing outside resources, and making support groups part of the transition home, t here is a potential for improving caregiver health and reducing caregiver strain, which could potentially lead to reduced re hospitalization rates for stroke patients (Richards, Latham, Jette, Rosenberg, Smout, & DeJong, 2005) and better outcomes for caregivers. Hypothesis: Occupational therapy has a role in better preparing caregivers for the transition home after discharge from therapy through preparation and education beginning during therapy, and through continuing support during the transition home. Methods We conducted a survey of occupational therapists and occupational therapy assistants working with stroke patients in care fa cilities across the Southeast United States. A University of Florida Department of Occupational Therapy provided contact list of o ccupational therapy site supervisors was used Some n ames from the list were eliminated based on certain criteria (pediatric, school facilities, universities, and government programs were not included). The first round of emails was sent to only locations in Florida, but the range was expanded to include the Southeast United States based on the initial number of respo nses.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 4 T he survey was sent to 154 facilities via email The 17 question survey was based on the model for caregiver tasks (Lutz et al, 2012) The survey completed by occupational therapists and occupational therapy assistants working with non pediatric stroke patients with family caregivers Participating facilities were contacted via e mail and asked to distribute a digital fly er to occupational therapists and occupational therapy assistants working with stroke patients. Participants volunteered by responding anonymously to the survey linked in fly er The survey was done through a University of Florida provided Qualtrics program. Q uestions were intended to identify areas where occupational therapists can better prepare caregivers for d ischarge and the immediate transition home. The survey and procedure were approved by the University of Florida IRB Board ( IRB201701895 ) Results Ultimately, t he s urvey received a total of 47 responses with 29 complete responses. Of the complete surveys, 9 3% were completed by occupational therapists and 7% were completed by occupational therapy assistants. Of the respondents, 14 worked in an acute inpatient setting, 2 worked in subacute inpatient, 19 worked in an inpatient rehabilitation facility, 5 worked outpatient, 4 worked home health, and 6 selected "Other." The average number of years working in occupational therapy was 13 years. The first three questions on the survey gathered data quantitatively on therapis t s use of in home or digital media evaluations and assessed the level of caregiver knowledge about support services before and after therapy.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 5 Ranking of caregiver knowledge of support servi c es. At the beginning of therapy, about 41% of caregivers were rated by occupational therapists as having n o knowledge of support services, 55% were rated as having little knowledge of support services, and just 3% were rated as having total knowledge of the support services available to them as caregivers. After the rapy, there was a slight change yet 65% of family caregivers did not have total knowledge of the support services and resources available to them. Next, therapists were asked to rank tasks for the caregiver in respect to three categories: importance for c aregiver preparation for discharge, adequacy of caregiver training, and contribution to caregiver strain. Tasks were ranked individually, and for each task the therapist was asked to give a ranking from 1 being a low score to 10 being the highest score. Me ans are all listed out of a possible 10. 41.38 55.17 3.45 3.45 62.07 34.48 0 10 20 30 40 50 60 70 No Knowledge Little Knowledge Total Knowledge Knowledge of Support Services Before vs. After Therapy Before Therapy After Therapy
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 6 Tasks in order of importance for caregiver preparation from most to least important Tasks Mean Training to perform safe transfers 9.10 Recommending appropriate equipment, supplied, and accessible transportation options 8.83 Training how to provide physical care and management 8.77 Training in fall prevention strategies 8.70 Training to provide hands on therapy 8.40 Recommending home modifications 8.07 Referring for further rehabilitation therapy (OT, PT, SLP) 8.03 Identifying resources 7.41 Training in coordinating care across settings 6.96 Identifying strategies for caregiver respite 6.83 Supporting other caregiver responsibilities 6.76 Problem solving and management of behavioral and emotional issues 6.70 Identifying caregiver health maintenance strategies 6.67 Problem solving in management of multiple appointments 6.00 Referring caregiver to individual or family counseling 5.86 Teaching medication management 5.80 out of 10, and 5.80. There is a significant d respite services, home modifications, and assistance in dealing with insurance issues, these tasks are important for ensuring a s uccessful transition back home.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 7 decrease caregive r strain and improve caregiver health were ranked at the bottom. Caregivers are well prepared to take care of their loved one, but less prepared to care for their own health. Tasks in order of adequacy of caregiver training listed from most adequate to least adequate. Caregivers were most adequately trained in how to perform safe transfers (8.80), yet they were the least adequately trained in access to resources such as management of appointments for the person in their care (3.83) and access to counseling (3.81). Careg ivers were ranked as being less adequately trained compared to the importance of their training. Task Mean Training to perform safe transfers 8.80 Recommending appropriate equipment, supplies, and accessible transportation options 8.50 Training how to provide physical care and management 8.27 Referring to further rehabilitation therapy (OT, PT, SLP) 8.07 Training in fall prevention strategies 7.90 Training to provide hands on therapy 7.83 Recommending home modifications 7.73 Problem solving and management of behavioral and emotional issues 5.73 Identifying resources 5.67 Training in coordinating care across settings 5.24 Teaching medication management 5.10 Supporting other caregiver responsibilities 4.83 Identifying caregiver health maintenance strategies 4.57 Identifying strategies for caregiver respite 4.04 Problem solving in management of multiple appointments 3.83 Referring caregiver to individual or family counseling 3.81
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 8 There was another significant drop in ranked adequacy of training between behav behavioral and emotional issues they may encounter with their loved one. Tasks in order of contributing to caregiver strain highest contribution to lowest contribution Task Mean Providing physical care and management 8.76 Problem solving and management of behavioral and emotional issues 7.79 Performing safe transfers 7.62 Completing home modifications 7.25 Attention to other caregiver responsibilities 6.97 Implementing strategies for caregiver respite 6.93 Acquiring appropriate equipment, supplied, and accessible transportation options 6.78 Coordinating care across settings 6.52 Implementing caregiver health maintenance strategies 6.48 Implementing fall prevention strategies 6.41 Management of multiple appointments 6.28 Providing hands on therapy 6.15 Identifying resources 5.52 Obtaining further rehabilitation therapy (OT, PT, SLP) 5.23 Obtaining individual or family counseling for the caregiver 5.00 Medication management 4.75 medication management caused the least caregiver strain (4.75). Tasks in order of importance did not line up with tasks in o caregiver strain (7.79), yet in terms of adequacy of preparation, it was ranked low (5.73).
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 9 This shows that th ere is a disconnect between what is causing caregivers the most challenges post discharge and what OTs are focusing their education on while in rehab. The final part of the survey consisted of four open response questions. Selected responses to these questions from the survey are shown here. How does your level of caregiver education change as the Functional Independence Measure (FIM) score of your patient changes? I will continue to address caregiver education/training even though the patient is making improvements based on their FIM score. A patient that is total assist would require us to begin hand over training and as the FIM score and comfort level of the CG changes so would our approach. Tactile cues then verbal cues. If the individual is becoming more independent it should be focused more on them and not the caregiver Depends a lot on the family and patient. I do a lot of education to family either telling them that it is okay to let go and let a patient shower by themselves for example or reminding them that even though a patient is making progress with independence, they may not be ready to be left alone yet or return to work. The more safe and independe nt the client, the less caregiver education is warranted/needed. The selected quotes indicate that therapists tend to base education on caring for the patient, there is little education for caregivers on self care or guidance with accessing resources fo r home modifications. The caregiver is primarily guided on how to care for the patient in therapy, there is little done to address caregiver needs post discharge or available resources.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 10 Describe any other aspects of occupational therapy that could abilities to help stroke patients after rehabilitation. I think safety is key, is the patient going to be safe at home with the caregiver? Is the caregiver going to be able to safely assist the patient? You do not want patients to fall at home, or not to be cared for properly. It could cause readmission to the hospital, falls, DCF involvement, or death. [Discharge] planning, caregiver training, and education should start ASAP. I would suggest a checklist or some type of written in formation in an easy to read (not overwhelming) format be caregiving services and try to get everything done right when the patient gets home instead of foc Give them resources like stroke.org where they can find an extensive amount of information. Have sessions that the caregiver joins in on at regular intervals so that they can be taugh t specific strategies you want them to help the client with. Caregiver health is critical in order to provide good care of the patients after rehab. Providing them with support, counseling and respite is an important part of my care. Accessibility to outside resources, importance of respite care, and knowledge/understanding of body mechanics is so important. The common themes in this question were using support groups continuing after therapy, starting home modifications while in t herapy, providing support to caregivers, and focusing on caregiver health maintenance. Support groups were mentioned by occupational therapists as being helpful to caregivers. However, caregivers often need to provide 24/7 care to their loved one, and we re unable to attend support groups or felt burdened trying to find time to attend support groups or find care for their loved one during that time (Young, Lutz, Creasy, Cox, & Martz, 2014). This shows the disconnect between OT recommendations for care and what is actually needed by caregivers.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 11 In your opinion, what is the importance of in home evaluations or digital media home evaluations during therapy? Barriers that can space s, cabinets, TV remotes that are not attached to walls Provide realistic accommodations or recommendations for improved functioning at home. Caregivers often have little grasp of what changes will need to be made upon return to home. ey actually get home with their loved one. Home assessments are very important in order to carry over the necessary skills to the home environment. It would be nice to see what the pts home actually looks like instead of assuming what the home is like f rom their description. According to the survey, 60% of occupational therapists do not perform in home or digital media evaluations, yet acknowledged the importance of doing in home evaluations for patient safety and caregiver adjustment. Using digital media such as Skype or FaceTime and in home evaluations allows OTs to better assess the home for safety risks and any needed modifications. This helps caregivers better understand any safety risks to mobility in the home and what changes or equipment will be needed before their loved one returns home. How does caregiver availability during rehabilitation influence your approach to therapy? It is important from the start of therapy to get the family involved with clear expectations of famil y and level of care the patient will require upon discharge home. Patients whose caregiver is present show better progress and prognosis, as compared to those who have to deal with CVA by themselves. [Caregiver availability] is the most important part of therapy if a patient wants to return home. Highly influences. Usually recommend more supportive setting when lack of caregiver availability. Caregivers are encouraged to participate/observe in as many treatment session as possible, schedule is rearra nged to accommodate caregivers schedule as needed/possible.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 12 The responses were consistent in that caregivers are an essential part of the recovery process. OTs need caregivers to be present, as they will be responsible for the care and safety of their l oved on after therapy. Therefore, it is necessary to also educate the caregiver on how to care for their own mental, physical, and emotional health, and give them realistic expectations for what life will be like after discharge. Discussion Other research has found that caregivers do feel unprepared and face a crisis at the moment of discharge (Young, Lutz, Creasy, Cox, & Marts, 2014). Caregivers felt alone and isolated after discharge, and struggled with managing responsibilities in their ro le as caregiver and obligations in their other roles. With limited time in therapy occupational therapists focus preparation of the caregiver. Averages in terms of adeq uacy of caregiver training were consistently ranked lower than tasks in terms of importance of training. In addition, there is a disconnect between what occupational therapists are preparing caregivers for and what caregivers feel they need. The tasks car egivers struggled with most were training to provide physical care and management, identifying resources, managing their other responsibilities, identifying health maintenance and respite strategies, and seeking out personal or family counseling (Young, Lu tz, Creasy, Cox, & Martz, 2014),(Lutz, Young, Cox, Marts, Creasy, 2013),(Creasy, Lutz, Young, Ford, & Martz, 2013). With the exception of providing physical care and management, these tasks were all ranked low by occupational therapists in terms of importa nce to caregiver training. There are three areas in which occupational therapy can be utilized in order to better support caregivers during the period post discharge using telehealth programs to accurately
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 13 assess the home environment, beginning home modi fications in acute care to reduce stress on the return home, and assisting caregivers with accessing outside resources available to them after therapy. Telerehabilitation Telerehabilitation is defined as the use of telecommunication technology to allow healthcare providers to serve patients at a distance. Occupational therapists could use telehealth strategies to better assess home modification needs (Carson, 2012) and if needed, provide education and support to caregivers remotely (Chi & Demiris, 2014 ) Smartphones with applications such as Skype or FaceT ime could be used to better assess the home environment and to more accurately gauge the assistive equipment and modifications needed for the home for safety and ease of mobility (Hoffmann & Cantoni,2008) Caregivers struggled with confidence in transferring skills learned in therapy into the home, and frequently struggled with correctly identifying the needed home modifications. Telerehabilitation can provide real time, remote support from occupational therapists to caregivers directly in the home, and offer guidance for caregivers (van den Berg, Crotty, Liu, Killington, Kwakkel, & van Wegen, 2016). However only 40% of occupational therapists are doing in home evaluations, digitally or in pe rson. Beginning Home Modifications in Therapy require necessary home accommodations as soon as possible (Krishnan, Pappadis, Weller, Fisher, Hay, & Reistetter, 2017). W ith limited time in therapy, it is almost impossible to have the home adequately prepared in time. Caregivers struggle with being there for their loved one while at the same time making the necessary arrangements for safety at home.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 14 prepared and we wished it could have been at least another week before he came home so we could have had a chance to set things up and had some of the stress (Lutz et al, 2016) Caregivers felt unprepared to find and access services for home contributing to caregiver strain. This rush is in part caused by caregivers not knowing what home modifications will be needed or where to get these things done. Occupati onal therapy can provide assistance in showing caregivers what will be needed, either through digital media evaluations or in home therapy, and guiding them through the process of acquiring these modifications. Assistance with Accessing Outside Services Caregivers are not just there to support the patient, they need education on how to care for themselves and their needs as well. They could benefit from family or personal counseling, but often are not able to seek out these services or are unaware that c ounseling services are available to them (Bakas, Jessup, McLennon, Habermann, Weaver, & Morrison, 2016). Caregivers were often overwhelmed trying to find the resources they were given in therapy (Bakas, Jessup, McLennon, Habermann, Weaver, & Morrison, 201 6). They struggled with making appointments, finding home modifications, and locating and using support and community services. In addition, caregivers struggled with medication management, ranked low by OTs, and proper care for their loved one in the home environment (Young, Lutz, Creasy, Cox, & Martz, 2014).
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 15 Outside resources, such as care management services would help caregivers with accessing resources, scheduling appointments, and navigating insurance issues. OT can be of assistance to caregivers by providing this information along with coaching throughout the process. Caregiving is a full time role and it does cause strain, so there is a place for occupational therapy in reducing that strain and assisting caregivers with the transition. Caregivers frequently reported a need for guidance in accessing support services. They were given the phone numbers and names, but needed help with making the calls, managing appointments, and being proactive in getting the services they needed. Occupational therapy can offer guidance and support to car egivers throughout this process. Future research can address the disconnect between what caregivers feel th ey need to important to the health and safety of the patient and the health of their loved one, and needs to is on success in life roles, there is a place for caregiver guidance and help with adjustment to discharge within the profession.
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 16 References Muntner, P. (2017). Heart disease and stroke statistics 2017 update: A report from the American Heart Association. Circulation, 135 (10) pp146 603 doi: https://doi.org/10.1161/CIR.0000000000000485 Cason, J. (2012). Telehealth Opportunities in Occupational Therapy Through the Affordable Care Act. Health Policy Perspectives, 66 (2), pp 131 136. Chi, N., Demiris, G. (2014). A systematic review of telehealth tools and interventions to support family caregivers. Journal of Telemedicine and Telecare, 21 (1) pp 37 44. doi : 10.1177/1357633X14562734 Hayes, J., Chapman, P., Young, L.J., Rittman, M. (2009). The prevalence of injury for stroke caregivers and associated risk factors. Topics in Stroke Rehabilitation, 16 300 307. doi: 10.1310/tsr1604 300 Hoffmann, T., Cantoni, N. (2008). Occupational therapy services for adult neurological clients in Queensland and therapists' use of telehealth to provide services. Australian Occupational Therapy Journal 55 (4), pp 239 248. doi:10.1111/j.1440 1630.2007.00693.x Krishnan, S., Papp adis, M., Weller, S., Fisher, S., Hay, C., & Reistetter, T. (2017 ) Patient centered mobility outcome preferences according to individuals with stroke and caregivers: a qualitative analysis. Disability and Rehabilitation. pp 1 9. doi: 10.1080/09638288.2017. 1297855
OCCUPATIONAL THERAPY AND STROKE CAREGIVING 17 Lutz, B., Young, M.E., Cox, K.J., Martz, C., Creasy, K.R. (2013). The crisis of stroke: Experiences of patients and their family caregivers. Topics in Stroke Rehabilitation, 18(6). doi: 10.1310/tsr1806 786 Lutz, B., Young, M.E., Creasy, K.R., Martz, C., Eisenbrandt, L., Brunny, J.N., Cook, C. (2016). Improving stroke caregiver readiness for transition from inpatient rehabilitation to home. The Gerontologist, 00, 1 10. doi: 10.1093/geront/gnw135 Richards, L., Latham, N., Jette, D., Rosenberg, L., Smout, R., DeJong, G. (2005) Characterizing Occupational Therapy Practice in Stroke Rehabilitation. Archives of Physical Medicine and Rehabilitation, 86 S51 60. Smith, L., Lawrence, M., Langhorne, P. ( survivors. Journal of Advanced Nursing, 46 (3). 235 244. doi: 10.1111/j.1365 2648.2004.02983.x Van den Berg, M., Crotty, M., Liu, E., Killington, M., Kwakkel, G., van Wegen, E. (2016) Early supported discharge by caregiver mediated exercises and e health support after stroke. Stroke 47 (7), 1885 1897. doi: 10.1161/STROKEAHA.116.013431 White, C., Brady, T., Saucedo, L., Motz, D., Sharp, J., Birnbaum, L. (2014) Towards a better understanding of readmiss ions after stroke: partnering with stroke survivors and caregivers. Journal of Clinical Nursing, 24 1091 1100. doi: 10.1111/jocn.12739