{"id":3823,"date":"2024-03-13T10:00:51","date_gmt":"2024-03-13T09:00:51","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-humanities\/?p=3823"},"modified":"2024-03-08T10:54:19","modified_gmt":"2024-03-08T09:54:19","slug":"imagining-new-humanities-based-interventions-to-address-caregiver-burden-in-chronic-illness","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-humanities\/2024\/03\/13\/imagining-new-humanities-based-interventions-to-address-caregiver-burden-in-chronic-illness\/","title":{"rendered":"Imagining New Humanities-Based Interventions to Address Caregiver Burden in Chronic Illness"},"content":{"rendered":"

Blog by Rita Dexter, MA<\/strong><\/p>\n

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<\/sup><\/a> 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.<\/p>\n

Caregiver burden has been well documented in the context of advanced heart failure.2<\/sup><\/a> However, there is a gap in literature exploring potential interventions for caregiver support in this particular population.3<\/sup><\/a> 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?<\/p>\n

 <\/p>\n

What Does It Mean to Be a Caregiver? <\/strong><\/p>\n

Especially for chronic illnesses, family caregivers serve as a critical extension of the US healthcare system.4<\/sup><\/a> 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<\/sup><\/a> In fact, many LVAD programs require patients to appoint a family member or close friend as a designated caregiver.6<\/sup><\/a> 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<\/sup><\/a> \u00a0<\/sup><\/p>\n

We asked caregivers about their experience following their loved one\u2019s implant surgery, and our findings were consistent with previously documented themes in the literature exploring the LVAD caregiver perspective.8<\/sup><\/a> Themes from the interviews include emotional and psychological distress, shouldering the burden of responsibility, and developing coping strategies.<\/p>\n

Following her loved one\u2019s LVAD implantation surgery, one caregiver described psychological distress in her desire to maintain a strong fa\u00e7ade while feeling emotionally overwhelmed: \u201cWhat else can you do? I told my little sister, \u2018If I start crying, I won\u2019t be able to stop.\u2019 So I just said \u2018nope\u2019\u201d (CG 408).9<\/sup><\/a><\/p>\n

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:<\/p>\n

SUBJECT<\/strong>: Well, and it\u2019s an open sore. And they keep saying well, they\u2019re going to do it [change the dressing]\u2026 I\u2019m saying, \u201cIt\u2019s open, and if I wasn\u2019t here, it wouldn\u2019t happen.\u201d\u2026 I\u2019m just telling you the truth \u2026 she\u2019s a brittle diabetic. She would have been dead 10 times\u2014<\/p>\n

INTERVIEWER<\/strong>: So you feel like an important role for the caretaker is\u2014<\/p>\n

SUBJECT<\/strong>: Well, I\u2019m keeping her alive. (CG 411)<\/p><\/blockquote>\n

A third caregiver told us that she coped with stress through faith: \u201cYou make your own stress. You[\u2019re] trying to worry about everything but\u2026God sees the way. He\u2019s the one that controls everything \u2026 And once you put faith in God\u2019s hands, all you need to do is just assist\u201d (CG 415).<\/p>\n

 <\/p>\n

\"\"
Brenda (left<\/em>) 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<\/a><\/strong>). She is seen here with her caregiver (right<\/em>) outside of her home in Houston, Texas. (Photo courtesy of Jack Thompson at DesignGood).<\/figcaption><\/figure>\n

 <\/p>\n

Caring for Those with Dementia<\/strong><\/p>\n

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.<\/p>\n

A 2022 study examined the feasibility of a multimodal performing arts intervention for caregivers of those with mild to moderately severe dementia.10<\/sup><\/a> 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.<\/p>\n

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 \u201cjoint respite\u201d allowed both parties to see each other in a different light, even if it was just for an hour.<\/p>\n

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<\/sup><\/a> The success demonstrated in this context suggests expansion to other chronic illnesses, such as heart failure, could have similar positive results.<\/p>\n

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.<\/p>\n

 <\/p>\n

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\u2019s 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. <\/em><\/p>\n

 <\/p>\n

References<\/strong><\/p>\n

[1]<\/a> Cassie Eno et al., \u201cForming Physicians: Evaluating the Opportunities and Benefits of Structured Integration of Humanities and Ethics into Medical Education,\u201d Journal of Medical Humanities<\/em> 44, no. 4 (2023): 503\u201331. https:\/\/doi.org\/10.1007\/s10912-023-09812-2<\/a>.<\/p>\n

[2]<\/a> Giancarlo Cicolini et al., \u201cThe Experience of Family Caregivers of Patients with a Left Ventricular Assist Device: An Integrative Review,\u201d Progress in Transplantation<\/em> 26, no. 2 (June 2016): 135\u201348. https:\/\/journals.sagepub.com\/doi\/10.1177\/1526924816640648<\/a>; Giada Rapelli et al., \u201c\u2018The Heart in a Bag\u2019: The Lived Experience of Patient-Caregiver Dyads with Left Ventricular Assist Device during Cardiac Rehabilitation,\u201d Frontiers in Psychology<\/em> 14 (March 2023): 1116739. https:\/\/doi.org\/10.3389\/fpsyg.2023.1116739<\/a>; Corline Brouwers et al., \u201cPsychological Distress in Patients with a Left Ventricular Assist Device and Their Partners: An Exploratory Study,\u201d European Journal of Cardiovascular Nursing<\/em> 14, no. 1 (February 2015): 53\u201362. https:\/\/doi.org\/10.1177\/1474515113517607<\/a>.<\/p>\n

[3]<\/a> Tao Zheng, \u201cWho Cares? An Existential Perspective of Caregiving for Individuals with a Left Ventricular Assist Device,\u201d Journal of Gerontological Nursing<\/em> 46, no. 11 (November 2020): 2\u20133. https:\/\/doi.org\/10.3928\/00989134-20201012-01<\/a>.<\/p>\n

[4]<\/a> Kristine Swartz and Lauren G. Collins, \u201cCaregiver Care,\u201d American Family Physician<\/em> 99, no. 11 (June 2019): 699\u2013706. https:\/\/www.aafp.org\/pubs\/afp\/issues\/2019\/0601\/p699.html<\/a>.<\/p>\n

[5]<\/a> The \u201cDeciding Together\u201d 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.<\/p>\n

[6]<\/a> Zheng, \u201cWho Cares?\u201d; Lisa A. Kitko, \u201cCaring for a Spouse with End-Stage Heart Failure through Implantation of a Left Ventricular Assist Device as Destination Therapy,\u201d Heart & Lung: The Journal of Cardiopulmonary and Acute Critical Care<\/em> 42, no. 3, (May-June 2014): 195\u2013201. https:\/\/doi.org\/10.1016\/j.hrtlng.2012.10.004<\/a>; Molly Magid, et al., \u201cThe Perceptions of Important Elements of Caregiving for an LVAD Patient: A Qualitative Meta-Synthesis,\u201d Journal of Cardiovascular Nursing<\/em> 31, no. 3 (May-June 2016): 215\u201325. https:\/\/doi.org\/10.1097\/JCN.0000000000000242<\/a>.<\/p>\n

[7]<\/a> Julie T. Bidwell et al., \u201cPatient and Caregiver Determinants of Patient Quality of Life and Caregiver Strain in Left Ventricular Assist Device Therapy,\u201d Journal of the American Heart Association<\/em> 7 no. 6 (March 2018): e008080. https:\/\/doi.org\/10.1161\/JAHA.117.008080<\/a>; Mandeep R. Mehra et al., \u201cPrimary 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,\u201d European Journal of Heart Failure<\/em> 23, no. 8 (August 2021): 1392\u2013<\/p>\n

    \n
  1. https:\/\/pubmed.ncbi.nlm.nih.gov\/33932272\/<\/a>.<\/li>\n<\/ol>\n

    [8]<\/a> Cicolini et al., \u201cThe Experience of Family Caregivers\u201d; Rapelli et al., \u201c\u2018The Heart in a Bag\u2019\u201d; Brouwers et al., \u201cPsychological Distress.\u201d<\/p>\n

    [9]<\/a> All quotes in this section are taken from raw data archives, and CG refers to caregiver.<\/p>\n

    [10]<\/a> Kim McManus, et al., \u201cThe Effect of a Performing Arts Intervention on Caregivers of People with Mild to Moderately Severe Dementia,\u201d Aging & Mental Health<\/em> 26, no. 4 (2022) 735\u201344. https:\/\/doi.org\/10.1080\/13607863.2021.1891200<\/a>.<\/p>\n

    [11]<\/a> Lee. D. Burnside et al., \u201chere:now \u2013 Conceptual Model of the Impact of an Experiential Arts Program on Persons with Dementia and Their Care Partners,\u201d Dementia<\/em> (London) 16, no. 1 (January 2017): 29\u201345. https:\/\/doi.org\/10.1177\/1471301215577220<\/a>;\u00a0\u00a0\u00a0\u00a0\u00a0 Paul M. Camic, Caroline Myferi Williams, and Frances Meeten, \u201cDoes a \u2019Singing Together Group\u2019 Improve the Quality of Life of People with a Dementia and their Carers? A Pilot Evaluation Study,\u201d Dementia<\/em> (London) 12, no. 2, (March 2013) 157\u201376. https:\/\/doi.org\/10.1177\/1471301211422761<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

    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 […]<\/p>\n

    Read More…<\/a><\/p>\n","protected":false},"author":345,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15070],"tags":[15068],"class_list":["post-3823","post","type-post","status-publish","format-standard","hentry","category-blog","tag-blog"],"yoast_head":"\nImagining New Humanities-Based Interventions to Address Caregiver Burden in Chronic Illness - Medical Humanities<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-humanities\/?p=3823\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Imagining New Humanities-Based Interventions to Address Caregiver Burden in Chronic Illness - Medical Humanities\" \/>\n<meta property=\"og:description\" content=\"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 [...]Read More...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/blogs.bmj.com\/medical-humanities\/?p=3823\" \/>\n<meta property=\"og:site_name\" content=\"Medical Humanities\" \/>\n<meta property=\"article:published_time\" content=\"2024-03-13T09:00:51+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2024\/03\/Dexter-Rita-Imagining-New-Humanities-Based-Interventions-to-Address-Caregiver-Burden-in-Chronic-Illness-01.jpg\" \/>\n<meta name=\"author\" content=\"Chris Pak\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Chris Pak\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"7 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823\"},\"author\":{\"name\":\"Chris Pak\",\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/#\\\/schema\\\/person\\\/0e11c1a9a0f1f9f2aa898a719652c44c\"},\"headline\":\"Imagining New Humanities-Based Interventions to Address Caregiver Burden in Chronic Illness\",\"datePublished\":\"2024-03-13T09:00:51+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823\"},\"wordCount\":1449,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/files\\\/2024\\\/03\\\/Dexter-Rita-Imagining-New-Humanities-Based-Interventions-to-Address-Caregiver-Burden-in-Chronic-Illness-01.jpg\",\"keywords\":[\"Blog\"],\"articleSection\":[\"Blog\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823\",\"url\":\"https:\\\/\\\/blogs.bmj.com\\\/medical-humanities\\\/?p=3823\",\"name\":\"Imagining New Humanities-Based Interventions to Address Caregiver Burden in Chronic Illness - 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