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Addressing Caregiver Burden in Spinal Cord Injury: Strategies for Healthcare Professionals

Alaena McCool, MS, OTR/L, CPAM

May 1, 2024



What are the various stressors experienced by caregivers of individuals with spinal cord injuries, and what strategies can healthcare professionals employ to alleviate caregiver burden?


Caregivers of individuals with spinal cord injuries face a multitude of stressors that can significantly impact their physical, emotional, social, and financial well-being. These stressors include role strain, relationship issues, financial instability, social isolation, mental health challenges, and physical tolls.

Role strain arises from the caregiver's need to take on multiple roles simultaneously, such as being a parent, spouse, friend, therapist, and even a full-time employee. This can be overwhelming, especially during the early phase of caregiving when adjustments are being made to accommodate the new responsibilities. Furthermore, this strain can lead to relationship issues, particularly for spouses, as the caregiving tasks may affect intimacy and connection.

Financial instability is another concern, as caregivers may have to allocate funds for medical bills, specialized equipment, and modifications to the home environment. This can result in reliance on other family members or friends for assistance, leading to inconsistency in caregiving tasks and potential disruptions in routines critical for the patient's well-being.

Social isolation is exacerbated by factors such as the COVID-19 pandemic, further complicating the caregiver's ability to seek support and maintain a social network. Mental health challenges, including depressive symptoms, anxiety, and burnout, are common among caregivers due to the chronic stress of caregiving responsibilities and the lack of adequate support.

Additionally, the physical toll of caregiving, such as assisting with transfers, mobility, and therapy, can lead to physical strain and limitations, particularly as caregivers age.

Healthcare professionals can employ various strategies to alleviate caregiver burden and support their well-being. These include:

  1. Caregiver Preparedness: Providing problem-solving training and self-management interventions to help caregivers set achievable goals, brainstorm solutions, and manage stress effectively.

  2. Information Sharing: Offering comprehensive information and resources through various mediums, such as email, web-based interventions, or printed material, tailored to the caregiver's learning style and needs.

  3. Monitoring and Support: Maintaining open dialogue and regular assessments to evaluate caregiver well-being, build trust, and provide ongoing support throughout the caregiving journey.

  4. Creating a New Normal: Collaborating with caregivers to identify stressors, develop routines, and explore adaptive strategies to enhance independence and reduce caregiver burden.

  5. Referrals and Specialist Support: Facilitating referrals to specialists, assistive technology services, mental health professionals, and support groups to address specific needs and enhance coping mechanisms.

  6. Education and Advocacy: Educating caregivers about routine care, follow-up procedures, available resources, and advocating for their needs within the healthcare system.

  7. Short and Long-Term Goals: Setting realistic short and long-term goals, implementing creative solutions, and providing adaptive equipment to improve caregiver confidence and patient outcomes.

This edited ask the expert is from the course, Caregiving For The Spinal Cord Injury Patient, by Alaena McCool, MS, OTR/L, CPAM

alaena mccool

Alaena McCool, MS, OTR/L, CPAM

Alaena McCool, MS, OTR/L, CPAM, is a practicing OT with over 6 years of experience and is currently an OT III at the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger Institute (KKI). She graduated from the University of Pittsburgh in 2011 with a BA in Communication Sciences and from New York University in 2015 with her Master's Degree in Occupational Therapy. She has spoken at both local and national conferences with an area of interest and clinical specialty in neurological recovery of the upper extremities in both adults and pediatrics.

Related Courses

Caregiving For The Spinal Cord Injury Patient
Presented by Alaena McCool, MS, OTR/L, CPAM
Recorded Webinar


Alaena McCool, MS, OTR/L, CPAM
Course: #4921Level: Introductory1 Hour
  'Good general overview for care of SCI patients and impact on caregivers'   Read Reviews
This course will explore how to identify caregiver challenges, as well as resources and creative problem-solving solutions available for caregivers and patients with spinal cord injuries. Case studies will be discussed at the end of the course to engage providers to think critically and ask questions to advance our treatment plans.

Interdisciplinary Approach To Stroke Rehabilitation: Outpatient, Home Health, And Community Rehabilitation Phase
Presented by Alaena McCool, MS, OTR/L, CPAM, Katherine George, PT, DPT
Recorded Webinar


Alaena McCool, MS, OTR/L, CPAMKatherine George, PT, DPT
Course: #4609Level: Intermediate2 Hours
  'The case studies are very informative'   Read Reviews
The unique relationship between the occupational and physical therapist when treating an acute, subacute, or chronic stroke diagnosis will be distinguished in this two-part series. Part two will focus on the subacute and chronic stroke, differentiating the home, outpatient, and community phases of rehabilitation, as well as examining the evaluation, evidence, and interventions in each setting to optimize independence for the patient.

Interdisciplinary Approach To Stroke Rehabilitation: Acute Care And Inpatient Rehabilitation Phase
Presented by Alaena McCool, MS, OTR/L, CPAM, Katherine George, PT, DPT
Recorded Webinar


Alaena McCool, MS, OTR/L, CPAMKatherine George, PT, DPT
Course: #4607Level: Intermediate2 Hours
  'Carryover from acute care setting to inpatient rehab'   Read Reviews
The unique collaboration and relationship between physical and occupational therapists throughout the evaluation and treatment of acute, subacute, and chronic stroke diagnoses will be analyzed in this two-part series. Part one will distinguish important stroke definitions used within the medical field and compare and contrast the differences between the acute and inpatient rehabilitation phases.

Diabetes in Adults: Current Guidelines and Evidence
Presented by Sally Stillings, MA, PT, MPT, CHT
Recorded Webinar


Sally Stillings, MA, PT, MPT, CHT
Course: #3958Level: Intermediate2 Hours
  'Current evidence, guidelines and research'   Read Reviews
This course gives us an overview of diabetes in adults, discusses current perspectives and guidelines, and addresses its significance in PT practice. It also looks at some of the current literature that addresses the evidence for risk factors and interventions and to see how they may apply to our practices. This course is directly related to the practice of physical therapy and is therefore appropriate for the PT/PTA.

An Amplitude-Focused Interprofessional Approach for Parkinson's Disease, In Partnership with LSVT® Global
Presented by Julia Wood, MOT, OTR/L, Heather J. Cianci, PT, MS, GCS, Heather Hodges, MA, CCC-SLP
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Julia Wood, MOT, OTR/LHeather J. Cianci, PT, MS, GCSHeather Hodges, MA, CCC-SLP
Course: #4470Level: Advanced5 Hours
  'I liked the examples of treatment'   Read Reviews
Master skills to implement in your practice immediately with continued Master Class. There is growing evidence that supports the benefit of providing care through an interprofessional approach for individuals with complex diagnoses like Parkinson’s disease (PD). This course serves to provide practical guidance in providing PT, OT, and SLP treatment set against the background of LSVT LOUD and LSVT BIG to positively impact the quality of life and function of those living with PD.

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