Imagining New Humanities-Based Interventions to Address Caregiver Burden in Chronic Illness

Blog by Rita Dexter, MA

As more and more medical schools incorporate medical humanities courses into their curriculum, their long-lasting impacts on the perspectives of our future physicians appear tangible.1 While we certainly need more empathetic and thoughtful physicians, medical humanities has the capacity to extend its reach beyond medical school education to help the patients and caregivers of today.

Caregiver burden has been well documented in the context of advanced heart failure.2 However, there is a gap in literature exploring potential interventions for caregiver support in this particular population.3 Healthcare professionals are inundated with responsibility as healthcare systems struggle to keep sufficient staff and provide basic care. How can we ask more of them? Could health and medical humanities address this gap?

 

What Does It Mean to Be a Caregiver?

Especially for chronic illnesses, family caregivers serve as a critical extension of the US healthcare system.4 Our research team at Baylor College of Medicine has seen firsthand the crucial role caregivers play in the course of this chronic illness, since we have been examining decision-making in patients with advanced heart failure considering a left ventricular assist device (LVAD).5 In fact, many LVAD programs require patients to appoint a family member or close friend as a designated caregiver.6 Providing care for a loved one with LVAD is often described as intensive and complex, particularly in the first year after surgery (when complications are most common).7  

We asked caregivers about their experience following their loved one’s implant surgery, and our findings were consistent with previously documented themes in the literature exploring the LVAD caregiver perspective.8 Themes from the interviews include emotional and psychological distress, shouldering the burden of responsibility, and developing coping strategies.

Following her loved one’s LVAD implantation surgery, one caregiver described psychological distress in her desire to maintain a strong façade while feeling emotionally overwhelmed: “What else can you do? I told my little sister, ‘If I start crying, I won’t be able to stop.’ So I just said ‘nope’” (CG 408).9

Another caregiver underscored his responsibility as an advocate for his wife, describing one hospitalization when he felt his absence would have resulted in her death:

SUBJECT: Well, and it’s an open sore. And they keep saying well, they’re going to do it [change the dressing]… I’m saying, “It’s open, and if I wasn’t here, it wouldn’t happen.”… I’m just telling you the truth … she’s a brittle diabetic. She would have been dead 10 times—

INTERVIEWER: So you feel like an important role for the caretaker is—

SUBJECT: Well, I’m keeping her alive. (CG 411)

A third caregiver told us that she coped with stress through faith: “You make your own stress. You[’re] trying to worry about everything but…God sees the way. He’s the one that controls everything … And once you put faith in God’s hands, all you need to do is just assist” (CG 415).

 

Brenda (left) worked closely with the research team at Baylor College of Medicine as a patient partner in developing the Deciding Together LVAD decision-aid (www.lvaddecisionaid.com). She is seen here with her caregiver (right) outside of her home in Houston, Texas. (Photo courtesy of Jack Thompson at DesignGood).

 

Caring for Those with Dementia

Dementia also has significant and enduring effects on both patients and caregivers. As with LVAD therapy, the literature on caregivers of persons with dementia (PwD) highlights caregiver stress. Several studies have employed health humanities interventions to address this need.

A 2022 study examined the feasibility of a multimodal performing arts intervention for caregivers of those with mild to moderately severe dementia.10 Participant dyads (PwD and their caregivers) attended structured classes at a Florida performing arts center over an eight-week period, incorporating a variety of performing arts techniques including theater games, movement exercises, improvisation, and scene work. Care recipient quality of life surveys were administered before, during, and following the intervention. Researchers also conducted semi-structured interviews with caregivers regarding their experience in the program. Results demonstrated the intervention may reduce caregiver burden.

Three major themes emerged from the caregiver interviews: a sense of community with other PwD/caregiver dyads, respite from dependency, and renewed care recipient engagement and well-being. Participants expressed how isolating the memory loss component of dementia can be for both the PwD and their caregiver, emphasizing that the program gave them a sense of community where they could safely discuss their challenges with those who understood them. Additionally, the program offered participants the chance to escape their roles for a dedicated period once a week. This “joint respite” allowed both parties to see each other in a different light, even if it was just for an hour.

Other arts-oriented interventions for PwD in the UK have demonstrated similar success in creating community and providing respite for caregiver/care recipient dyads.11 The success demonstrated in this context suggests expansion to other chronic illnesses, such as heart failure, could have similar positive results.

Caregivers play a vital role supporting chronically ill patients in the home. Imagining ways to improve their quality of life is vitally important and presents an opportunity for outside-of-the-box humanities and arts interventions.

 

Rita Dexter is a bioethics research assistant in the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston, Texas. She earned her master’s in bioethics and medical humanities at Case Western Reserve University in 2023. Her research interests include medical decision-making, disability studies, medical and health humanities, reproductive justice and ethics, and clinical ethics.

 

References

[1] Cassie Eno et al., “Forming Physicians: Evaluating the Opportunities and Benefits of Structured Integration of Humanities and Ethics into Medical Education,” Journal of Medical Humanities 44, no. 4 (2023): 503–31. https://doi.org/10.1007/s10912-023-09812-2.

[2] Giancarlo Cicolini et al., “The Experience of Family Caregivers of Patients with a Left Ventricular Assist Device: An Integrative Review,” Progress in Transplantation 26, no. 2 (June 2016): 135–48. https://journals.sagepub.com/doi/10.1177/1526924816640648; Giada Rapelli et al., “‘The Heart in a Bag’: The Lived Experience of Patient-Caregiver Dyads with Left Ventricular Assist Device during Cardiac Rehabilitation,” Frontiers in Psychology 14 (March 2023): 1116739. https://doi.org/10.3389/fpsyg.2023.1116739; Corline Brouwers et al., “Psychological Distress in Patients with a Left Ventricular Assist Device and Their Partners: An Exploratory Study,” European Journal of Cardiovascular Nursing 14, no. 1 (February 2015): 53–62. https://doi.org/10.1177/1474515113517607.

[3] Tao Zheng, “Who Cares? An Existential Perspective of Caregiving for Individuals with a Left Ventricular Assist Device,” Journal of Gerontological Nursing 46, no. 11 (November 2020): 2–3. https://doi.org/10.3928/00989134-20201012-01.

[4] Kristine Swartz and Lauren G. Collins, “Caregiver Care,” American Family Physician 99, no. 11 (June 2019): 699–706. https://www.aafp.org/pubs/afp/issues/2019/0601/p699.html.

[5] The “Deciding Together” LVAD decision-aid project was supported by grant number R01HS027784 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the author and does not necessarily represent the official views of the Agency for Healthcare Research and Quality.

[6] Zheng, “Who Cares?”; Lisa A. Kitko, “Caring for a Spouse with End-Stage Heart Failure through Implantation of a Left Ventricular Assist Device as Destination Therapy,” Heart & Lung: The Journal of Cardiopulmonary and Acute Critical Care 42, no. 3, (May-June 2014): 195–201. https://doi.org/10.1016/j.hrtlng.2012.10.004; Molly Magid, et al., “The Perceptions of Important Elements of Caregiving for an LVAD Patient: A Qualitative Meta-Synthesis,” Journal of Cardiovascular Nursing 31, no. 3 (May-June 2016): 215–25. https://doi.org/10.1097/JCN.0000000000000242.

[7] Julie T. Bidwell et al., “Patient and Caregiver Determinants of Patient Quality of Life and Caregiver Strain in Left Ventricular Assist Device Therapy,” Journal of the American Heart Association 7 no. 6 (March 2018): e008080. https://doi.org/10.1161/JAHA.117.008080; Mandeep R. Mehra et al., “Primary Results of Long-Term Outcomes in the MOMENTUM 3 Pivotal Trial and Continued Access Protocol Study Phase: A Study of 2200 HeartMate 3 Left Ventricular Assist Device Implants,” European Journal of Heart Failure 23, no. 8 (August 2021): 1392–

  1. https://pubmed.ncbi.nlm.nih.gov/33932272/.

[8] Cicolini et al., “The Experience of Family Caregivers”; Rapelli et al., “‘The Heart in a Bag’”; Brouwers et al., “Psychological Distress.”

[9] All quotes in this section are taken from raw data archives, and CG refers to caregiver.

[10] Kim McManus, et al., “The Effect of a Performing Arts Intervention on Caregivers of People with Mild to Moderately Severe Dementia,” Aging & Mental Health 26, no. 4 (2022) 735–44. https://doi.org/10.1080/13607863.2021.1891200.

[11] Lee. D. Burnside et al., “here:now – Conceptual Model of the Impact of an Experiential Arts Program on Persons with Dementia and Their Care Partners,” Dementia (London) 16, no. 1 (January 2017): 29–45. https://doi.org/10.1177/1471301215577220;      Paul M. Camic, Caroline Myferi Williams, and Frances Meeten, “Does a ’Singing Together Group’ Improve the Quality of Life of People with a Dementia and their Carers? A Pilot Evaluation Study,” Dementia (London) 12, no. 2, (March 2013) 157–76. https://doi.org/10.1177/1471301211422761.

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