Addressing Gaps in Educational Materials for Caregivers of Individuals with Progressive MS

Background

My name is Sarah Stewart, and I am currently a 3^rd year Doctor of Physical Therapy student at UNC Chapel Hill. One of my most meaningful experiences during PT school has been aiding a community member with secondary progressive MS with her ADLs and exercises. When reflecting on this experience and other clinical experiences I’ve had in various inpatient and outpatient settings, I have noticed that several patients and their caregivers have difficulty transitioning to self-sufficiency in their home exercise programs after being discharge from PT care. Specifically, I became interested in how physical therapists can play a critical role in this transition process by providing education to caregivers and patients within our scope to facilitate communication between provider and patient/caregiver, encourage safe transfer and mobility techniques in the home, promote patient and caregiver confidence in performance of safe mobility tasks, and preparing for future challenges that may uniquely occur with the progressive nature of MS. Through many conversations with classmates, community members, and faculty, I identified a lack of current literature and resources that are available to caregivers of those with MS and began brainstorming ways that I could create a capstone project to address this topic.

I will be graduating from the UNC Doctor of Physical Therapy program this July, after completion of a 3-month rotation working with the neurologic population in the inpatient rehab setting. I hope to work with patients with neurologic diagnoses, including MS, in the triangle area as a physical therapist once I graduate. I hope that this project will not only help myself to become a more educated clinician who recognizes the need for the integration of caregiver education into physical therapy practice, but also to help provide education and resources to those who are caregivers of individuals with MS and help the public to recognize the need for growing research in this field of study.

My professional development goals include creating a deliverable to be used and distributed by other healthcare professionals, develop stronger presentation skills, and build connections with current clinicians and community members who have knowledge in this field. My clinical practice goals include expanding my knowledge of long-term care and support for individuals with degenerative diseases, providing care that supports the patient and their caregivers as a whole person based on the ICF model. I hope that completion of this capstone project will put me on the right path to be successful in achieving all of my professional/clinical development goals I have listed. This project gives me the opportunity to serve the community of caregivers of people with progressive MS and improve the quality of current educational resources available for this community.

Statement of Need

With disease progression in MS comes gradual decline in functional mobility. Members of the healthcare team, the individual, and the caregiver of the individual are responsible for helping to maintain current mobility level, tracking changes in mobility, as well as taking action to accommodate for changes in functional status.¹ As individuals decline in mobility, they may become more dependent on their caregiver for completion of ADLs and participating in activities that they enjoy as well as some individuals may experience other symptoms requiring more specialized attention, such as cognitive and emotional changes, making the caregiver carry a more integral role for the care of the individual. This can cause stress, uncertainty, and neglect of personal wellbeing in the caregiver if the caregiver has inadequate support, resources, time, and education.^1,2 Our role as physical therapists is primarily to assess and treat mobility impairments and functional limitations, however it is equally important that we ensure the patients, and their caregivers are prepared with education and resources to be self-sustaining after they are discharged from our care. Additionally, physical therapists may need to encourage and direct the caregivers develop adequate strategies to address new demands on their time, psychological and physical resources.

As there are several resources available online for MS, I have found very few resources that provide education and advice for caregivers who assist with mobility and transfers specific to progression of the MS disease course. This project would aim to create a deliverable to be given to caregivers of patients with progressive MS which will educate them on safe transfers, body mechanics, what to expect with MS progression, and the importance of caregiver self-care supported by current research for this population.

Overview & Purpose

This project aims to address the need for additional educational materials specific for caregivers of individuals with MS. Along with this, I will investigate what education is typically provided to caregivers of patients with progressive MS regarding safety and body mechanics as well as signs that their loved one may need updated exercises to better fit their impairment level. Additionally, caregiver burden with progression of MS may be addressed in this project as well.

I began this project by sending out an initial survey to this caregiver group several months ago, as those of you who participated may recall, with the intention of asking caregivers themselves what topics they felt were lacking in the caregiver education they have received in the past and what education they would find most useful as a caregiver of someone with MS. After I received the results from this survey, I began to gather all caregiver materials that currently exist, both related to general caregiving and caregiving specifically for MS. I then conducted a literature search of all available published research articles related to caregiving for MS which were utilized to create a presentation to be given to a caregiver support group that would both be educational and facilitate discussion. A presentation was given live as well as a VoiceThread recording was developed to be shared with other caregivers who may find this resource beneficial in the future.

Health Literacy

Health literacy is an important consideration when developing educational materials for the public who we cannot assume has an adequate understanding of medical terminology or health concepts and how to apply this information to making health decisions. We know that caregivers specifically with low health literacy have increased difficulty with healthcare system navigation, which includes the communication of needs to health providers and the coordination of needed services by the care recipient.³ Low health literacy among caregivers indicates a need to promote health literacy through training interventions.⁴ Training interventions focusing on caregiver empowerment, self-efficacy, and active participation in training programs increases health literacy and improved quality of care provided by the caregiver.⁴ Components of health literacy considerations that I have integrated into the development of this project included modification of the language, flow, and overall organization of the presentation, and inclusion of active participation and caregiver empowerment in the hopes of increasing the caregiver’s navigation of health services, self-efficacy, and quality of care.

Products

An Initial Qualtrics Survey for caregivers of individuals with MS to gauge areas of need for additional educational resources

A Final Qualtrics Survey following my final capstone presentation in order to evaluate the quality, content, and effectiveness of the presentation for caregivers.

An Evidence Table and literature review was created to evaluate the current available evidence on the physical and psychological impacts of caregiving and strategies to implement caregiver education to those who are caregivers of individuals with MS as a part of physical therapy intervention.

A PowerPoint Presentation designed to be presented live virtually as well as a VoiceThread recording of the presentation were developed on the topic of caregiver education for those who are caregivers of individuals with MS on mobility, body mechanics, transfers, and what to expect with progression of MS and mobility.

A Supplementary Handout of resources was created in order to supplement the presentation and provide caregivers of those with MS access to additional educational materials regarding caregiving that are available on the web.

Evaluation

I incorporated feedback from my advisor and committee members to improve the presentation for both the live session and for the VoiceThread recording. Zoom meetings and email exchanges were the primary forms of communication for receiving feedback and discussing what feasible modifications could be made which helped to improve the overall flow, quality, and appearance of the presentation.

I created a final evaluation survey which was completed by caregivers who participated in my live presentation via Zoom. The final survey consisted of a questionnaire which asked participants to rank the quality, effectiveness, strengths, weaknesses, and recommendations for improvements for the presentation. Overall, caregivers found the presentation beneficial for improving their understanding of safe body mechanics with transfer techniques and were likely to implement the knowledge gained into their caregiving. Areas for future growth for this project would include inclusion of live, hands-on training sessions or video demonstrations of specific transfer techniques for caregivers of individuals with MS to further increase understanding and encourage application of the content included in the presentation.

Reflections

Throughout the process of developing this capstone project, I have gained increased knowledge on the importance of implementation of caregiver education into physical therapy intervention for those individuals with MS as well as the need for development of research in this area. This project also facilitated my own professional growth in leadership, communication skills, and connection to the MS caregiver community via collaboration with my advisor and committee members as well as through the delivery of a live presentation to a virtual caregiver group. More broadly, development of this capstone project gave me the opportunity to re-explore my desire to work with the neurologic population and ultimately the reason why I chose the profession of physical therapy. Finally, this project has given me confidence in my abilities to develop and present materials to caregivers and patients.

Acknowledgements

Special thank you to Dr. Vicki Mercer, who served as my Capstone Advisor and encouraged me to challenge myself as well as providing invaluable insight and feedback throughout the development of this project. Thank you to Dr. Russell Weiner, who has served as an excellent resource for insights into caregiving and for kick-starting my brainstorming of this project. Thank you to Dr. Angela Rosenburg and Dr. Jessica Cassidy for providing additional feedback and tips for improvement of my capstone materials. Finally, thank you to my UNC classmates for the endless support and motivation throughout the past three years of this program.

References

1.    Dunn J. Impact of mobility impairment on the burden of caregiving in individuals with multiple sclerosis. Expert Rev Pharmacoecon Outcomes Res. 2010;10(4):433-440. doi:10.1586/erp.10.34
2.    Rajachandrakumar R, Finlayson M. Multiple sclerosis caregiving: A systematic scoping review to map current state of knowledge. Health Soc Care Community. Published online December 22, 2021. doi:10.1111/hsc.13687
3.    Yuen EYN, Knight T, Ricciardelli LA, Burney S. Health literacy of caregivers of adult care recipients: A systematic scoping review. Health Soc Care Community. 2018;26(2):e191-e206. doi:10.1111/hsc.12368
4.    Jafari Y, Tehrani H, Esmaily H, Shariati M, Vahedian-Shahroodi M. Family-centred empowerment program for health literacy and self-efficacy in family caregivers of patients with multiple sclerosis. Scand J Caring Sci. 2020;34(4):956-963. doi:10.1111/scs.12803