The emotional burden of caregiving for patients with cirrhosis
Abstract Caregivers for patients with cirrhosis face immense physical and psychological strain that negatively impact quality of life and ability to care for oneself. The aim is to explore the caregiver experience for patients with cirrhosis, identify prominent stressors, and understand the multidim...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wolters Kluwer Health/LWW
2022-10-01
|
| Series: | Hepatology Communications |
| Online Access: | https://doi.org/10.1002/hep4.2030 |
| _version_ | 1797705799012712448 |
|---|---|
| author | Zachary M. Saleh Najat E. Salim Samantha Nikirk Marina Serper Elliot B. Tapper |
| author_facet | Zachary M. Saleh Najat E. Salim Samantha Nikirk Marina Serper Elliot B. Tapper |
| author_sort | Zachary M. Saleh |
| collection | DOAJ |
| description | Abstract Caregivers for patients with cirrhosis face immense physical and psychological strain that negatively impact quality of life and ability to care for oneself. The aim is to explore the caregiver experience for patients with cirrhosis, identify prominent stressors, and understand the multidimensional contributors to caregiver burden, to help tailor effective interventions. The caregivers of 25 patients with decompensated cirrhosis underwent semistructured in‐person interviews and completed written exercises targeting emotional disclosure or resilience training that were analyzed for dominant emotions and themes. Burden was quantified using the Zarit Burden Interview‐12 (ZBI, range 0–48), Distress Thermometer (0–10), and Caregiver Captivity Index (0–4). Quality of life was assessed with a visual analog scale (0–100). Median ZBI was moderate (14 [10–19]), as was distress (5 [2–7]), and captivity (2 [1–4]). Quality of life was fair (80 [70–85]). Dominant emotions included anxiety, guilt, fear, frustration, captivity, and resentment. Prominent themes included lack of time for self‐care, hierarchy of caregiver role, support from versus frustration with medical professionals, social support, spirituality and religion, and disease‐related restrictions. Hepatic encephalopathy, and need to follow strict nutrition and diet recommendations, are frequent sources of disease‐related caregiver burden. The health care system confers some degree of burden, especially when doubts arise regarding physician competence. Conclusion: Caregiver burden is significant. The impact of interventions to alleviate caregiver burden should be explored, so that their appreciated efforts do not have such detrimental effects on their quality of life. |
| first_indexed | 2024-03-12T05:42:40Z |
| format | Article |
| id | doaj.art-9adf99d41dbe42ef9eafc191a94af0fd |
| institution | Directory Open Access Journal |
| issn | 2471-254X |
| language | English |
| last_indexed | 2024-03-12T05:42:40Z |
| publishDate | 2022-10-01 |
| publisher | Wolters Kluwer Health/LWW |
| record_format | Article |
| series | Hepatology Communications |
| spelling | doaj.art-9adf99d41dbe42ef9eafc191a94af0fd2023-09-03T05:56:13ZengWolters Kluwer Health/LWWHepatology Communications2471-254X2022-10-016102827283510.1002/hep4.2030The emotional burden of caregiving for patients with cirrhosisZachary M. Saleh0Najat E. Salim1Samantha Nikirk2Marina Serper3Elliot B. Tapper4Department of Internal Medicine University of Michigan Health System Ann Arbor Michigan USADivision of Gastroenterology and Hepatology University of Michigan Ann Arbor Michigan USADivision of Gastroenterology and Hepatology University of Michigan Ann Arbor Michigan USADivision of Gastroenterology and Hepatology University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USADivision of Gastroenterology and Hepatology University of Michigan Ann Arbor Michigan USAAbstract Caregivers for patients with cirrhosis face immense physical and psychological strain that negatively impact quality of life and ability to care for oneself. The aim is to explore the caregiver experience for patients with cirrhosis, identify prominent stressors, and understand the multidimensional contributors to caregiver burden, to help tailor effective interventions. The caregivers of 25 patients with decompensated cirrhosis underwent semistructured in‐person interviews and completed written exercises targeting emotional disclosure or resilience training that were analyzed for dominant emotions and themes. Burden was quantified using the Zarit Burden Interview‐12 (ZBI, range 0–48), Distress Thermometer (0–10), and Caregiver Captivity Index (0–4). Quality of life was assessed with a visual analog scale (0–100). Median ZBI was moderate (14 [10–19]), as was distress (5 [2–7]), and captivity (2 [1–4]). Quality of life was fair (80 [70–85]). Dominant emotions included anxiety, guilt, fear, frustration, captivity, and resentment. Prominent themes included lack of time for self‐care, hierarchy of caregiver role, support from versus frustration with medical professionals, social support, spirituality and religion, and disease‐related restrictions. Hepatic encephalopathy, and need to follow strict nutrition and diet recommendations, are frequent sources of disease‐related caregiver burden. The health care system confers some degree of burden, especially when doubts arise regarding physician competence. Conclusion: Caregiver burden is significant. The impact of interventions to alleviate caregiver burden should be explored, so that their appreciated efforts do not have such detrimental effects on their quality of life.https://doi.org/10.1002/hep4.2030 |
| spellingShingle | Zachary M. Saleh Najat E. Salim Samantha Nikirk Marina Serper Elliot B. Tapper The emotional burden of caregiving for patients with cirrhosis Hepatology Communications |
| title | The emotional burden of caregiving for patients with cirrhosis |
| title_full | The emotional burden of caregiving for patients with cirrhosis |
| title_fullStr | The emotional burden of caregiving for patients with cirrhosis |
| title_full_unstemmed | The emotional burden of caregiving for patients with cirrhosis |
| title_short | The emotional burden of caregiving for patients with cirrhosis |
| title_sort | emotional burden of caregiving for patients with cirrhosis |
| url | https://doi.org/10.1002/hep4.2030 |
| work_keys_str_mv | AT zacharymsaleh theemotionalburdenofcaregivingforpatientswithcirrhosis AT najatesalim theemotionalburdenofcaregivingforpatientswithcirrhosis AT samanthanikirk theemotionalburdenofcaregivingforpatientswithcirrhosis AT marinaserper theemotionalburdenofcaregivingforpatientswithcirrhosis AT elliotbtapper theemotionalburdenofcaregivingforpatientswithcirrhosis AT zacharymsaleh emotionalburdenofcaregivingforpatientswithcirrhosis AT najatesalim emotionalburdenofcaregivingforpatientswithcirrhosis AT samanthanikirk emotionalburdenofcaregivingforpatientswithcirrhosis AT marinaserper emotionalburdenofcaregivingforpatientswithcirrhosis AT elliotbtapper emotionalburdenofcaregivingforpatientswithcirrhosis |