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Caring for an Individual with Chronic Lymphocytic Leukemia (CLL): Understanding Family Caregivers’ Perceptions of Social Support, Caregiver Burden, and Unmet Support Needs

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Abstract

Family caregivers (FCs) of a patient with chronic lymphocytic leukemia (CLL) can encounter unpredictable challenges and care demands. They can experience high levels of burden, a loss of self-care, and poor quality of life. Their receipt of social support and ability to communicate with clinicians may impact their burden. FCs would benefit from educational resources that teach them communication skills central to their ability to obtain the support they need—support that is imperative to reducing burden. To better target psychosocial educational interventions focused on social support and communication skills, we aimed to explore the relationship between social support, sources of support, and burden; the relationship between FCs’ clinical communication and their perceptions of support and burden; and any unmet support needs. A total of 575 CLL FCs completed an online survey of validated scales about social support, burden, and clinical communication, as well as an open-ended item in which they reported any unmet support needs. Statistical analyses showed that FCs who perceived they were more supported reported less burden, and female FCs reported more burden than males. Support from family, friends, and professionals collectively contributed to FCs’ support. FCs who perceived they had stronger communication skills with their loved one’s clinicians reported more social support. FCs identified six areas of unmet support needs: financial, emotional, informational, instrumental, peer, and communication support. Collectively, findings show that increased social support can reduce FCs’ burden and qualitative findings provide a roadmap of social support domains to target that could potentially improve the caregiving experience.

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Acknowledgements

We are grateful to the CLL Society for their partnership in recruitment. We thank the CLL caregivers for generously sharing their time and experiences with us.

Funding

This research was funded by AstraZeneca Pharmaceuticals LP and The Leukemia & Lymphoma Society.

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Authors and Affiliations

  1. College of Humanities and Social Sciences, George Mason University, Fairfax, VA, USA

    Kevin B. Wright

  2. College of Medicine, University of Florida, Gainesville, FL, USA

    Carma L. Bylund & Carla L. Fisher

  3. School of Medicine, Department of Oncology, Karmanos Cancer Institute, Wayne State University, Detroit, MI, USA

    Diliara Bagautdinova

  4. College of Journalism and Communications, University of Florida, Gainesville, FL, USA

    Taylor S. Vasquez

  5. The Leukemia & Lymphoma Society, Rye Brook, NY, USA

    Maria Sae-Hau, Elisa S. Weiss & Michelle Rajotte

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  1. Kevin B. Wright
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  4. Taylor S. Vasquez
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  8. Carla L. Fisher
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Correspondence to Kevin B. Wright.

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Wright, K.B., Bylund, C.L., Bagautdinova, D. et al. Caring for an Individual with Chronic Lymphocytic Leukemia (CLL): Understanding Family Caregivers’ Perceptions of Social Support, Caregiver Burden, and Unmet Support Needs. J Canc Educ 39, 180–185 (2024). https://doi.org/10.1007/s13187-023-02392-8

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  • DOI: https://doi.org/10.1007/s13187-023-02392-8

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