Caregiver Burden: Trends, Perceptions, and Strategies to Improve Cultural Competency in Rehabilitation

More than one in five US adults provides regular care to a loved one with a chronic condition or disability¹—and while caregiving can be deeply meaningful, it often comes with significant challenges. Caregiver burden, a term used to describe the emotional, physical, and financial strain of caregiving, is a growing concern across healthcare. In rehabilitation settings, caregivers are essential partners in patient recovery, yet their needs often go unrecognized. In this article, we will explore the scope of caregiver burden, the role of cultural competency in care delivery, and strategies to better support caregivers in diverse clinical contexts.

The role of the caregiver: A multidisciplinary skill set

Navigating the responsibilities of caregiving often represents a significant and long-term lifestyle shift. In rehabilitation, especially in speech-language pathology, occupational therapy, and physical therapy, you’ll likely work closely with caregivers who play a critical role in supporting patient recovery, progress, and overall well-being.

Depending on the setting and condition, caregivers may contribute to rehabilitation in the following ways:

• Assisting with activities of daily living (ADLs), while promoting patient independence

• Modifying the home environment to ensure safety and accessibility

• Reinforcing therapy routines through consistent home practice

• Providing emotional support and motivation during difficult phases of recovery

• Managing appointments and transportation to maintain care continuity

• Monitoring progress and communicating changes to the care team

Due to the increase in ethnic diversity, elderly adults, and immigrants in the United States, the projected need for rehabilitation professionals who provide services to culturally and linguistically diverse (CLD) patients is evident. Culturally competent care is defined as care that respects diversity in the patient population and cultural factors that can affect health and health care, such as language, communication styles, beliefs, attitudes, and behaviors.

Because caregiving is a complex, deeply personal, and culturally derived process, family caregivers across all demographics who are impacted by stressors can have a direct bearing on how well caregivers are motivated to help their loved ones participate in intervention programs.

Whole-body impacts of caregiving

Caregiver burden touches nearly every aspect of a person’s health and daily life. It can influence not just their well-being, but also the outcomes of the person they’re supporting. Research has identified a wide range of physical, emotional, and functional effects:

• Physical strain is among the most frequently reported challenges, often exacerbated by the loss of personal time and stressors intensified during the COVID-19 pandemic.²

• Mental health concerns such as anxiety, depression, guilt, resentment, and functional impairment have a clear relationship to high caregiver burden.³

• Occupational disruptions, with 6 in 10 caregivers needing job accommodations like decreased working hours or leave of absence.³

• Expanded medical responsibilities, as caregivers often go beyond assisting with activities of daily living (ADLs) to perform complex tasks typically managed by nurses, such as administering injections, managing feeding tubes, or providing catheter and colostomy care.³

• Medical complications, including hyperlipidemia, hyperglycemia, sleep disturbances, weakened immunity, and early transition to frailty syndrome have also been linked to caregiving burden.⁴ 

As a clinician, understanding these patterns can help you identify red flags early and guide caregivers toward supportive interventions.

Identifying trends: Factors that influence caregiver burden

A range of personal, social, and cultural factors contribute to how caregivers experience and manage burden. By recognizing these influences, you can more effectively tailor your support to meet caregivers’ individual needs.

Family dynamics

Married caregivers reported higher levels of perceived social support and lower caregiving burden compared to divorced and widowed individuals.⁴ Emotional partnership and shared responsibilities may help buffer stress, while solo caregivers often lack consistent support.

Support and coping

Regular social engagement and physical activity correlate with lower caregiver burden.⁴ Religious coping adds complexity: while some caregivers draw strength from their faith, others may rely on spiritual support at the expense of seeking professional mental health care.⁵ This complexity highlights the importance of acknowledging caregivers’ spiritual beliefs while also encouraging engagement with professional support when it aligns with their values.

Individual circumstances 

Caregivers without health insurance or those with pre-existing medical conditions report higher levels of burden.⁴ These vulnerabilities can limit care access and amplify caregiving's physical and emotional toll.

Age

As caregivers age and accumulate more experience, their spiritual well-being may improve, but perceived social support often declines, and burden increases.⁴ This pattern suggests that while long-term caregivers may find meaning in their role, the cumulative stress still impacts their health and resilience.

Spiritual perspectives

Caregivers’ beliefs about illness influence how they interpret and cope with their situation.⁶ Those who view caregiving as a spiritual calling may experience more positive outcomes, while those who feel abandoned or punished by their faith often report poorer emotional and spiritual health. Understanding these perspectives can help you provide more empathetic, personalized care.

Multicultural trends: Caregiving across the continuum

From stigma to language barriers, cultural values shape how caregivers seek and sustain support. Understanding these trends is critical to delivering equitable, person-centered care.

Racial and ethnic minority groups often face unique challenges when it comes to caregiving. For example, in some communities, misconceptions about Alzheimer’s disease, such as viewing cognitive decline as a normal part of aging, can delay diagnosis and reduce care-seeking. In many Asian cultures, stigma and shame may prevent families from pursuing outside help or considering long-term care options.⁷

If you work with caregivers of children with disabilities, be aware that they often report heightened physical and mental health challenges.⁸ The stress of managing daily routines and advocating within healthcare systems can add additional strain. Emerging research even suggests that in high-stress caregiving environments, reduced verbal interaction with infants may affect long-term language development in both the child receiving care and their siblings.⁹

These patterns highlight the need for tailored outreach, ongoing clinician training, and culturally attuned interventions that reflect the realities of diverse caregiving experiences.

Where support falls short, and how to close the gap

Although caregiver burden is widely recognized, addressing it effectively requires more than awareness. Both caregivers and providers face distinct pressures that, if unaddressed, can lead to breakdowns in care coordination and poorer outcomes. Understanding needs on both sides is essential to building culturally responsive, sustainable support systems.

Caregivers have reported the need for:¹⁰

• Inclusive community resources that reflect diverse family structures, financial circumstances, and cultural backgrounds. To address this, clinicians can maintain a curated list of local and virtual support services, including culturally specific organizations, financial aid programs, and language-accessible caregiver groups.

• Programs that acknowledge the caregiver’s multiple roles, from care coordinator to emotional support provider. To meet this need, interdisciplinary care teams can incorporate caregiver input into treatment planning and offer brief caregiver check-ins or educational sessions that validate and support their multifaceted responsibilities.

• Providers who understand the emotional and psychological impact of caregiving. To overcome this, clinician training should include reflective practice strategies like trauma-informed care and empathy-based communication to better engage with caregivers' lived experiences.

Therapists have reported the need for:

• Greater ability to interpret nonverbal communication, especially when working with culturally or linguistically diverse families.¹¹ This can be addressed by encouraging continuing education in intercultural communication and co-training with interpreters to improve recognition of subtle cues.

• Increased confidence in referring caregivers for support services.² To reduce this barrier, clinics can create standardized referral pathways and keep updated directories of mental health, respite, and community-based resources.

• Practical tools and time to address caregiver burden.² A practical solution is to integrate brief caregiver screening tools into routine intake or progress check-ins. Additionally, advocating for interdisciplinary staff, such as social workers or care navigators, can help share the responsibility of caregiver support.

4 self-assessment questions for culturally responsive practice

Providing culturally responsive care requires intentional effort. You can use the following questions to reflect on and strengthen your approach with caregivers from diverse backgrounds.

1. Are there language barriers?

Language challenges reduce communication quality, delay assessments, and diminish therapeutic rapport.⁸ Family members used as interpreters can unintentionally alter responses or speak on behalf of the patient. Collaborating with trained interpreters and scheduling proactively can reduce these risks.

2. What cultural factors should I consider when engaging with the caregiver?

Caregiving roles, expressions of emotion, and help-seeking behaviors vary widely across cultures.¹² Women are often expected to take on caregiving duties. Minority caregivers may experience greater burden due to fewer financial or social supports.¹³ Stigmas around disability can also discourage therapy participation. Word choices matter: in some cultures, clinical terms may carry unintended weight or shame.

3. How can I improve my assessment procedures for culturally and linguistically diverse patients?

Standard tools often overlook cultural norms or expectations. Use culturally validated instruments like the Caregiver Strain Index, Spiritual Well-Being Scale, or Perceived Social Support Questionnaire to capture a fuller picture of the caregiver experience.

4. Are there predisposing factors that impact the success of therapy?

Low health literacy, especially among immigrants and refugees, is linked to higher caregiver burden and poorer outcomes.¹³ Some caregivers are literate in their native systems but struggle to navigate Western healthcare. Acculturation may improve engagement, but assumptions should not replace individualized assessment.

4 strategies to embed caregiver support in daily practice

Understanding barriers is the first step, but taking action is how you create meaningful change. These four strategies can help you reduce caregiver burden, foster more inclusive care environments, and improve outcomes across diverse patient populations.

1. Hold an in-service

Lead joint education sessions for caregivers and clinicians to build shared understanding and practical collaboration. Caregivers often need guidance navigating the healthcare system, managing access barriers, and understanding common secondary conditions within their communities.¹⁰

2. Invest in a strong support team

Advocate for bilingual care navigators, behavioral health specialists, and community liaisons who can center caregiver well-being and promote cultural responsiveness. Reducing caregiver burden takes more than individual effort. It requires organizational support. 

3. Have a clear and measurable vision

Set actionable goals for improving caregiver support in your practice. Track caregiver outcomes alongside patient progress. Ask yourself: How can you increase caregiver health literacy? How can you reduce therapy-related burnout?

4. Reframe your role as a multicultural healthcare provider

Use tools like the Ecological Validity Model (EVM) and Cultural Adaptation Checklist (CAC) to guide you in creating culturally and linguistically responsive interventions. These frameworks support better buy-in, greater sustainability, and long-term caregiver engagement.

Building trust through cultural awareness

Names, titles, and identity terms often carry deep meaning and are frequently associated with a racial, ethnic, cultural, or religious group. The mispronunciation of names can undermine one's identity, similar to misgendering. Chronic mispronunciation can lead to feeling marginalized, unaccepted, and undervalued. It can also be experienced as a microaggression, leaving caregivers or patients feeling dismissed or unseen.

Building rapport through personal identity

Correctly using a caregiver’s name and acknowledging their cultural identity are foundational steps in providing culturally responsive care. These small but meaningful actions signal respect, build trust, and set the stage for deeper connection. Rapport begins with language, and you play a key role in ensuring that identity is affirmed, not overlooked.

Here are practical ways to honor a caregiver’s identity in everyday interactions:

• Use, acknowledge, and pronounce cultural terms. Even if they’re unfamiliar or outside your comfort zone

• When a patient uses a cultural title for a family member, mirror that language to show respect

• Learn the historical context or personal significance of a caregiver’s name, when appropriate

• Ask about and document correct pronunciation

• Gently correct mispronunciations when they occur

• Avoid remarks about a name being “difficult” or “unusual,” even in casual conversation

• Ask about ethnicity and preferred heritage terms

• Don’t shy away from using culturally appropriate identity terms (e.g., “Mexican,” “African American,” “Latino”) when relevant and respectful

Functional adaptations for culturally relevant care

Integrating a caregiver’s or patient’s cultural background into therapy can improve comfort, participation, and outcomes. Consider the following areas when planning culturally responsive interventions:

• Food and nutrition: Incorporate culturally familiar foods, cooking methods, and utensils into therapy activities or discussions around diet and ADLs.

• Religious and cultural practices: Acknowledge functional impacts related to prayer, fasting, worship routines, or religious items such as prayer rugs or sacred texts.

• Holidays and traditions: Anticipate cultural or religious holidays (e.g., Diwali, Eid, Hanukkah, Lunar New Year) and associated rituals such as gift-giving, family gatherings, or ceremonial meals.

• Clothing and attire: Include traditional garments (e.g., kimono, sari, dashiki, keffiyeh, poncho) in ADL training or mobility tasks when relevant to the individual’s daily life.

• Cultural music, dance, and art: Incorporate music, dance, instruments, or visual arts from the individual’s culture as therapeutic tools, brain breaks, or social engagement activities.

• Digital culture and media: Use culturally specific digital tools (such as regionally popular news sources, television shows, or public figures) to build rapport and engagement.

• Language and communication: Include regionally or culturally relevant vocabulary, phrases, or slang in therapy to reflect the patient’s natural communication style.

Supporting those who support others

Caregiver burden is more than a clinical concern. It is a human one. As a clinician, your awareness, empathy, and cultural responsiveness can profoundly shape a caregiver’s experience and influence patient outcomes. By recognizing the challenges caregivers face and embedding support into your everyday practice, you help build a more inclusive, resilient, and compassionate healthcare system.

Every caregiver you meet brings their own story, strengths, and struggles. When you take time to listen, adapt, and advocate, you do more than reduce caregiver burden. You raise the standard of care for every patient and family you serve.

References

1. Centers for Disease Control and Prevention. (2024). Changes in health indicators among caregivers. https://www.cdc.gov/mmwr/volumes/73/wr/mm7334a2.htm

2. Chen, C., Shune, S., & Namasivayam-MacDonald, A. (2021). Clinician perspectives on caregiver burden. Perspectives of the ASHA Special Interest Groups, 6(6), 1452–1469. https://pubs.asha.org/doi/10.1044/2021_PERSP-21-00157

3. National Alliance for Caregiving & AARP. (2015). Caregiving in the U.S. 2015 (Revised). https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf

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7. Jang, Y., Yoon, H., Park, N. S., et al. (2018). Alzheimer’s concerns in Asian Americans. Health & Social Care in the Community, 26(2), 199–206. https://pubmed.ncbi.nlm.nih.gov/28980423/

8. Cui, P., Yang, M., Hu, H., et al. (2024). Caregiver burden and quality of life in cancer caregiving. BMC Public Health, 24, Article 817. https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18321-3

9. Markfeld, J. E., Feldman, J. I., Bordman, S. L., et al. (2023). Caregiver stress and infant language outcomes. JSLHR, 66(1), 190–205. https://pubmed.ncbi.nlm.nih.gov/36525624/

10. Funk, K. J. (2023). Caregiver views on community access for children with disabilities. AJOT, 77(Suppl_2), 7711505151p1. https://research.aota.org/ajot/article/77/Supplement_2/7711505151p1/24362/Caregivers-Perspectives-on-Community-Access-amp

11. Altarriba, J., & Kazanas, S. A. (2017). Neurorehabilitation and communication in Latino populations. Perspectives of the ASHA SIGs, 2(2), 132–141. https://pubs.asha.org/doi/abs/10.1044/persp2.SIG2.132

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