研究背景及重要性：末期病人常高度依賴家庭照顧者，依賴關係不僅增加照顧者負荷，也可能引發病人的自覺負擔，進而使其尊嚴受苦。然而，既有研究多聚焦於病人端，較少同時將「自覺負擔」、「照顧者負荷」及其「尊嚴受苦」與置於同一架構加以檢驗。
研究目的：本初步研究旨在探討末期病人自覺負擔、照顧者負荷及尊嚴受苦之現況與相關性。
研究方法：本研究為橫斷式相關性研究設計，於臺灣南部某醫學中心以方便取樣招募病人—照顧者對偶 (dyadic)。納入條件：年滿18歲、經醫師診斷為末期、病人與照顧者皆同意、可使用國語或台語溝通、無影響作答之認知障礙。透過結構式問卷收集，病人蒐集人口學資料、中文版尊嚴評估量表 (Patient Dignity Inventory–Mandarin Version, PDI-MV)、自覺負擔量表 (Self-Perceived Burden Scale, SPBS)、簡式健康量表 (Brief Symptom Rating Scale, BSRS)、日常生活能力量表 (Activities of Daily Living, ADL)，照顧者蒐集人口學資料、照顧者反應評估量表 (Caregiver Reaction Assessment, CRA)、BSRS。以描述性統計呈現病人自覺負擔、照顧者負荷與尊嚴受苦之現況；以Spearman’s等級相關係數檢驗其相關性。
研究結果：共40對病人及家庭照顧者參加研究。現況方面，有75 % 病人有自覺負擔情形，構面以「身體負擔」最高；照顧者負荷所有構面中以「自尊感受」最高分，而其負荷面向中則以「時間負荷」最高；另外，輕度尊嚴受苦病人佔60 %、30 %為中度，及10 %為重度，構面以「身體依賴」得分最高。最後，相關性分析顯示，病人自覺負擔與其尊嚴受苦呈顯著正相關 (ρ = .604, p < .001)，病人自覺負擔與照顧者負荷亦呈顯著正相關 (ρ = .364, p = .021)，然而照顧者負荷與病人尊嚴受苦無顯著相關。
結論：末期病人的自覺負擔與尊嚴受苦呈顯著正相關，顯示病人自覺是他人負擔是影響尊嚴受苦的關鍵因素；而照顧者負荷與病人尊嚴受苦無顯著相關，支持臨床上需分別評估病人與照顧者之需求。維持病人之獨立性（如復健、輔具）並提供心理支持，可能有助降低自覺負擔與尊嚴受苦。另外，尤須特別注意，雖照顧者負荷與病人尊嚴受苦無顯著相關，但其與自覺負荷呈正相關，顯示照顧者與病人仍具連動性，故未來仍可進一步探討當中複雜的關聯與互動模式。

This preliminary cross-sectional study aimed to explore the relationship between self-perceived burden (SPB), caregiver burden (CB), and dignity distress (DRD) in patients with terminal illness. The inclusion criteria were patients aged 18 years or older with a confirmed diagnosis of terminal illness and their family caregivers, with both parties providing consent. Participants were required to communicate in Mandarin or Taiwanese and to have no cognitive impairment affecting questionnaire completion. From January to August 2025, 40 patient–caregiver dyads with terminal illness were recruited from hospice wards, hospice shared care, and home-based palliative care in a southern Taiwan medical center. Patients provided demographic and disease-related information and completed the Patient Dignity Inventory–Mandarin Version (PDI-MV), the Self-Perceived Burden Scale (SPBS), the Brief Symptom Rating Scale (BSRS), and an Activities of Daily Living (ADL) measure, while caregivers provided demographic information and completed the Caregiver Reaction Assessment (CRA) and the BSRS. Spearman’s rank correlation analyses revealed significant associations between dignity distress and self-perceived burden, and between self-perceived burden and caregiver burden; however, caregiver burden was not significantly associated with patients’ dignity distress.
To ensure methodological rigor in a small, clinically heterogeneous sample, non-parametric procedures were used given the anticipated non-normality of psychometric scores in palliative settings. Dyadic recruitment allowed concurrent appraisal of patient- and caregiver-reported outcomes within the same clinical context, thereby situating SPB at the intersection of individual symptom experience and relational caregiving dynamics. Standardized, Mandarin-validated instruments were selected to enhance cultural and linguistic appropriateness across care settings (inpatient hospice, shared care, and home-based services). Data quality was supported through trained research staff, brief instrument sets to minimize respondent fatigue, and checks for missingness prior to analysis.
Findings underscore SPB as a potential bridge variable linking patient experiences of dignity to the strains perceived by family caregivers. Clinically, results suggest that routine screening of SPB may help identify patients at elevated risk of dignity threats and prompt earlier, targeted conversations about goals of care, autonomy, and relational concerns (e.g., “being a burden”). For caregivers, although no direct association with patients’ DRD was observed, caregiver burden may operate as a potential factor influencing dignity indirectly through patients’ self-perceived burden, meriting future study
As a preliminary study, limitations include convenience sampling at a single center, modest sample size, and cross-sectional design, which preclude causal inference and may underpower detection of weaker associations. Future research should test dyadic models that formally evaluate mediating and moderating roles of SPB, incorporate longitudinal trajectories across disease milestones, and consider multivariable approaches controlling for emotional distress and functional impairment.

內政部（2024）‧戶政司人口統計‧取自https://statis.moi.gov.tw/micst/webMain.aspx?k=menuy
安寧緩和醫學會（2022，11月23日）‧安寧共照試辦方案‧https://www.hospicemed.org.tw/ehc-tahpm/s/w/WebRules_2/articles/15/1
李淑霞、吳淑瓊（1998）‧家庭照護者負荷與憂鬱之影響因素‧護理研究，6（1）， 57-68。https://www.airitilibrary.com/Article/Detail/10226265-199802-6-1-57-68-a
林以婕、邱恩琦（2023）‧失智症照顧者之負荷量表與其心理計量特性之回顧‧臺灣職能治療期刊，41（1），43-65。 https://doi.org/10.6594/tjot.202304_41(1).0003
法務部（2021）‧安寧緩和醫療條例‧全國法規資料庫‧https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=L0020189&kw=%e7%97%85%e4%ba%ba%e8%87%aa%e4%b8%bb%e6%ac%8a%e5%88%a9%e6%b3%95
法務部（2021）‧長期照顧服務法‧全國法規資料庫‧https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=L0070040
法務部（2021）‧病人自主權利法‧全國法規資料庫‧https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=L0020189&kw=%e7%97%85%e4%ba%ba%e8%87%aa%e4%b8%bb%e6%ac%8a%e5%88%a9%e6%b3%95
邱子芸、賴維淑（2022）‧尊嚴療法提升癌末病人尊嚴感之成效‧台灣醫學，26（4），466-476。https://doi.org/10.6320/fjm.202207_26(4).0011
國家教育研究院（2021）‧教育部國語辭典簡編本。
張彤、柯獻欽（2023）‧疫情之下的安寧療護介入──論台灣南部某醫學中心安寧介入之概況‧安寧療護雜誌，27（1），32-43。https://doi.org/10.6537/TJHPC.202303_27(1).03
陳美如、鄭鈺郿（2020）‧影響安寧共同照護會診之因素探討－以台北市某區域醫院為例．北市醫學雜誌，1-8。https://doi.org/10.6200/tcmj.202201/pp.0042
劉梅英、劉雪娥、王宏銘、蔡培癸、簡淑慧、林怡欣（2015）‧安寧共同照顧模式對改善癌末主要照顧家屬照顧負荷之成效‧護理暨健康照護研究‧11（4），257-266。https://doi.org/10.6225/jnhr.11.4.257
劍橋大學出版社（2022）‧劍橋英語辭典‧取自https://dictionary.cambridge.org/zht/%E8%A9%9E%E5%85%B8/%E8%8B%B1%E8%AA%9E/self-identify
衛生福利部（2017）‧照顧管理評估量表‧取自https://www.mohw.gov.tw/dl-15878-85fb3fa5-9172-431a-986e-35d16c6ff701.html
衛生福利部（2024）‧111年癌症登記報告‧取自https://www.hpa.gov.tw/Pages/List.aspx?nodeid=119
戴金英、唐秀治（2006）‧影響癌末病人主要照顧家屬正向與負向照顧經驗之因素探討‧新臺北護理期刊，8(1)，17-31。https://doi.org/10.6540/NTJN.2006.1.003
鍾曉文（2020）‧中文版「自覺負擔量表」在血液透析病人之應用〔未出版之碩士論文〕‧國防醫學院護理研究所。
Anderberg, P., Lepp, M., Berglund, A. L., & Segesten, K. (2007). Preserving dignity in caring for older adults: A concept analysis. Journal of Advanced Nursing, 59(6), 635-643. https://doi.org/10.1111/j.1365-2648.2007.04375.x
Bagheri, H., Yaghmaei, F., Ashktorab, T., & Zayeri, F. (2018). Test of a Dignity Model in patients with heart failure. Nursing Ethics, 25(4), 532-546. https://doi.org/10.1177/0969733016658793
Bagherian, S., Sharif, F., Zarshenas, L., Torabizadeh, C., Abbaszadeh, A., & Izadpanahi, P. (2020). Cancer patients' perspectives on dignity in care. Nursing Ethics, 27(1), 127-140. https://doi.org/10.1177/0969733019845126
Bandeali, S., des Ordons, A. R., & Sinnarajah, A. (2020). Comparing the physical, psychological, social, and spiritual needs of patients with non-cancer and cancer diagnoses in a tertiary palliative care setting. Palliative & Supportive Care, 18(5), 513-518. https://doi.org/10.1017/s1478951519001020
Bentley, B., O'Connor, M., Kane, R., & Breen, L. J. (2014). Feasibility, acceptability, and potential effectiveness of dignity therapy for people with motor neurone disease. PLoS One, 9(5), e96888. https://doi.org/10.1371/journal.pone.0096888
Bostwick, D., Wolf, S., Samsa, G., Bull, J., Taylor, D. H., Jr., Johnson, K. S., & Kamal, A. H. (2017). Comparing the Palliative Care Needs of Those With Cancer to Those With Common Non-Cancer Serious Illness. Journal of Pain and Symptom Management, 53(6), 1079-1084.e1071. https://doi.org/10.1016/j.jpainsymman.2017.02.014
Bovero, A., Cotardo, F., Lops, C., Botto, R., & Geminiani, G. C. (2023). Is there a relationship between end-of-life cancer patients' dignity-related distress and caregivers' distress? An exploratory study. Palliative & Supportive Care, 21(4), 578-584. https://doi.org/10.1017/s1478951522000840
Bovero, A., Cotardo, F., Pierotti, V., Gottardo, F., Botto, R., Opezzo, M., & Geminiani, G. C. (2021). Personality Traits and Sense of Dignity in End-of-Life Cancer Patients: A Cross-Sectional Study. The American Journal of Hospice & Palliative Care, 38(1), 39-46. https://doi.org/10.1177/1049909120920232
Bovero, A., Sedghi, N. A., Opezzo, M., Botto, R., Pinto, M., Ieraci, V., & Torta, R. (2018). Dignity-related existential distress in end-of-life cancer patients: Prevalence, underlying factors, and associated coping strategies. Psycho-Oncology, 27(11), 2631-2637. https://doi.org/10.1002/pon.4884
Brożek, B., Fopka-Kowalczyk, M., Łabuś-Centek, M., Damps-Konstańska, I., Ratajska, A., Jassem, E., Larkin, P., & Krajnik, M. (2019). Dignity Therapy as an aid to coping for COPD patients at their end-of-life stage. Advances in Respiratory Medicine, 87(3), 135-145. https://doi.org/10.5603/ARM.a2019.0021
Bujang, M. A., Omar, E. D., Foo, D. H. P., & Hon, Y. K. (2024). Sample size determination for conducting a pilot study to assess reliability of a questionnaire. Restorative Dentistry & Endodontics, 49(1), e3. https://doi.org/10.5395/rde.2024.49.e3
Chan, H. M., & Pang, S. (2007). Long-term care: Dignity, autonomy, family integrity, and social sustainability: The Hong Kong experience. The Journal of Medicine and Philosophy, 32(5), 401-424. https://doi.org/10.1080/03605310701631661
Chan, W. C., Chan, C. L., & Suen, M. (2013). Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: An initiative of medical social workers. Health & Social Work, 38(4), 214-221. https://doi.org/10.1093/hsw/hlt021
Chen, J., Zhang, M. Y., Gao, Y. H., Zhang, L., & Li, J. (2024). Quality of life after idiopathic multicentric Castleman disease in China: a cross-sectional, multi-center survey of patient reported outcome and caregiver reported outcome. Orphanet Journal of Rare Diseases, 19(1), 469. https://doi.org/10.1186/s13023-024-03450-0
Chen, X., Wang, Z., Zhou, J., Lin, C., Luo, H., Zhao, J., Loke, A. Y., & Li, Q. (2023). The impact of self-perceived burden, caregiver burden, and dyadic coping on negative emotions in colorectal cancer patient-spousal caregiver dyads: a dyadic analysis Frontiers in Psychology, 14. https://doi.org/10.3389/fpsyg.2023.1238924
Chen, X., Wang, Z., Zhou, J., Loke, A. Y., & Li, Q. (2024). A scoping literature review of factors influencing cancer patients’ self-perceived burden. European Journal of Oncology Nursing, 68, 102462. https://doi.org/https://doi.org/10.1016/j.ejon.2023.102462
Chiao, C. Y., Wu, H. S., & Hsiao, C. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340-350. https://doi.org/10.1111/inr.12194
Chochinov, H. M. (2002). Dignity-conserving care-a new model for palliative care: Helping the patient feel valued. JAMA, 287(17), 2253-2260. https://doi.org/10.1001/jama.287.17.2253
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2002). Dignity in the terminally ill: A cross-sectional, cohort study. Lancet (London, England), 360(9350), 2026-2030. https://doi.org/10.1016/s0140-6736(02)12022-8
Chochinov, H. M., Hack, T., McClement, S., Kristjanson, L., & Harlos, M. (2002). Dignity in the terminally ill: A developing empirical model. Social Science & Medicine, 54(3), 433-443. https://doi.org/10.1016/s0277-9536(01)00084-3
Chochinov, H. M., Hassard, T., McClement, S., Hack, T., Kristjanson, L. J., Harlos, M., Sinclair, S., & Murray, A. (2008). The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. Journal of Pain and Symptom Management, 36(6), 559–571. https://doi.org/10.1016/j.jpainsymman.2007.12.018
Chochinov, H. M., Johnston, W., McClement, S. E., Hack, T. F., Dufault, B., Enns, M., Thompson, G., Harlos, M., Damant, R. W., Ramsey, C. D., Davison, S., Zacharias, J., Milke, D., Strang, D., Campbell-Enns, H. J., & Kredentser, M. S. (2016). Dignity and distress towards the end of life across four non-cancer populations. PLoS One, 11(1), e0147607. https://doi.org/10.1371/journal.pone.0147607
Chochinov, H. M., Kristjanson, L. J., Hack, T. F., Hassard, T., McClement, S., & Harlos, M. (2007). Burden to Others and the Terminally Ill. Journal of Pain and Symptom Management, 34(5), 463-471. https://doi.org/https://doi.org/10.1016/j.jpainsymman.2006.12.012
Chochinov, H. M., McClement, S. E., Hack, T. F., McKeen, N. A., Rach, A. M., Gagnon, P., Sinclair, S., & Taylor-Brown, J. (2012). The Patient Dignity Inventory: applications in the oncology setting. Journal of Palliative Medicine, 15(9), 998–1005. https://doi.org/10.1089/jpm.2012.0066
Chochinov, H. M., Tataryn, D., Clinch, J. J., & Dudgeon, D. (1999). Will to live in the terminally ill. Lancet, 354(9181), 816-819. https://doi.org/10.1016/s0140-6736(99)80011-7
Chou, K. R. (2000). Caregiver burden: A concept analysis. Journal of Pediatric Nursing, 15, 398-407
Chou, K. R., Jiann-Chyun, L., & Chu, H. (2002). The reliability and validity of the Chinese version of the caregiver burden inventory. Nursing Research, 51(5), 324-331. https://doi.org/10.1097/00006199-200209000-00009
Cousineau, N., McDowell, I., Hotz, S., & Hébert, P. (2003). Measuring Chronic Patients’ Feelings of Being a Burden to their Caregivers: Development and Preliminary Validation of a Scale. Medical Care, 41(1). https://journals.lww.com/lww-medicalcare/fulltext/2003/01000/measuring_chronic_patients__feelings_of_being_a.13.aspx
Coventry, M. L. (2006). Care with dignity: A concept analysis. Journal of Gerontological Nursing, 32(5), 42-48. https://doi.org/10.3928/00989134-20060501-08
Dakessian Sailian, S., Salifu, Y., Saad, R., & Preston, N. (2021). Dignity of patients with palliative needs in the Middle East: An integrative review. BMC Palliative Care, 20(1), 112. https://doi.org/10.1186/s12904-021-00791-6
Dictionary. (n.d.). Dignity. https://www.dictionary.com/browse/dignity
de Voogd, X., Willems, D. L., Torensma, M., Onwuteaka-Philipsen, B. D., & Suurmond, J. L. (2021). Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study. BMC Palliative Care, 20(1), 26. https://doi.org/10.1186/s12904-021-00721-6
Donato, S. C., Matuoka, J. Y., Yamashita, C. C., & Salvetti, M. G. (2016). Effects of dignity therapy on terminally ill patients: A systematic review. Revista da Escola de Enfermagem da U S P, 50(6), 1014-1024. https://doi.org/10.1590/s0080-623420160000700019
Dong, D., Cai, Q., Zhang, Q. Z., Zhou, Z. N., Dai, J. N., Mu, T. Y., Xu, J. Y., & Shen, C. Z. (2021). Dignity and its related factors among older adults in long-term care facilities: A cross-sectional study. International Journal of Nursing Sciences, 8(4), 394-400. https://doi.org/10.1016/j.ijnss.2021.08.003
Dos Santos Barros, V., Bassi-Dibai, D., Guedes, C. L. R., Morais, D. N., Coutinho, S. M., de Oliveira Simões, G., Mendes, L. P., da Cunha Leal, P., & Dibai-Filho, A. V. (2022). Barthel Index is a valid and reliable tool to measure the functional independence of cancer patients in palliative care. BMC Palliative Care, 21(1), 124. https://doi.org/10.1186/s12904-022-01017-z
Franco, H., Caldeira, S., & Nunes, L. (2021). Dignity in nursing: A synthesis review of concept analysis studies. Nursing Ethics, 28(5), 734-749. https://doi.org/10.1177/0969733020961822
Gagnon Mailhot, M., Léonard, G., Gadoury-Sansfaçon, G. P., Stout, D., & Ellefsen, É. (2022). A Scoping Review on the Experience of Participating in Dignity Therapy for Adults at the End of Life. Journal of Palliative Medicine, 25(7), 1143-1150. https://doi.org/10.1089/jpm.2021.0498
Ge, C., Yang, X., Fu, J., Chang, Y., Wei, J., Zhang, F., Nutifafa, A. E., & Wang, L. (2011). Reliability and validity of the Chinese version of the Caregiver Reaction Assessment. Psychiatry and Clinical Neurosciences, 65(3), 254-263. https://doi.org/10.1111/j.1440-1819.2011.02200.x
Geerlings, A. D., Kapelle, W. M., Sederel, C. J., Tenison, E., Wijngaards-Berenbroek, H., Meinders, M. J., Munneke, M., Ben-Shlomo, Y., Bloem, B. R., & Darweesh, S. K. L. (2023). Caregiver burden in Parkinson's disease: A mixed-methods study. BMC Medicine, 21(1), 247. https://doi.org/10.1186/s12916-023-02933-4
Geng, D., Ou, R., Miao, X., Zhao, L., Wei, Q., Chen, X., Liang, Y., Shang, H., & Yang, R. (2017). Patients’ self-perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study. Journal of Clinical Nursing, 26(19-20), 3188-3199. https://doi.org/https://doi.org/10.1111/jocn.13667
Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271–283. https://doi.org/10.1002/nur.4770150406
Gülke, E., & Pötter-Nerger, M. (2022). Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation. Brain Sciences, 12(2). https://doi.org/10.3390/brainsci12020238
Guo, Q., Zheng, R., Jacelon, C. S., McClement, S., Thompson, G., & Chochinov, H. (2022). Dignity of the patient-–family unit: Further understanding in hospice palliative care. BMJ Supportive & Palliative care, 12(e4), e599-e606. https://doi.org/10.1136/bmjspcare-2019-001834
Guo, Z. (1995). Chinese Confucian culture and the medical ethical tradition. Journal of Medical Ethics, 21(4), 239-246. https://doi.org/10.1136/jme.21.4.239
Hall, S., Goddard, C., Opio, D., Speck, P., & Higginson, I. J. (2012). Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: A phase II randomized controlled trial of a brief palliative care psychotherapy. Palliative Medicine, 26(5), 703-712. https://doi.org/10.1177/0269216311418145
Hasegawa, N., & Ota, K. (2019). Concept synthesis of dignity in care for elderly facility residents. Nursing Ethics, 26(7-8), 2016-2034. https://doi.org/10.1177/0969733018824763
Hemati, Z., Ashouri, E., AllahBakhshian, M., Pourfarzad, Z., Shirani, F., Safazadeh, S., Ziyaei, M., Varzeshnejad, M., Hashemi, M., & Taleghani, F. (2016). Dying with dignity: A concept analysis. Journal of Clinical Nursing, 25(9-10), 1218-1228. https://doi.org/10.1111/jocn.13143
Hergert, D. C., & Cimino, C. R. (2021). Predictors of Caregiver Burden in Huntington's Disease. Archives of Clinical Neuropsychology : The Official Journal of the National Academy of Neuropsychologists. https://doi.org/10.1093/arclin/acab009
Hertzog, M. A. (2008). Considerations in determining sample size for pilot studies. Research in nursing & health, 31(2), 180-191. https://doi.org/10.1002/nur.20247
Hoenig, J., & Hamilton, M. W. (1966). The schizophrenic patient in the community and his effect on the household. The International Journal of Social Psychiatry, 12(3), 165-176. https://doi.org/10.1177/002076406601200301
Holmerová, I., Jurasková, B., Kalvach, Z., Rohanová, E., Rokosová, M., & Vanková, H. (2007). Dignity and palliative care in dementia. The Journal of Nutrition, 11(6), 489-494.
https://dict.concised.moe.edu.tw/
Hui, D., Paiva, C. E., Del Fabbro, E. G., Steer, C., Naberhuis, J., van de Wetering, M., Fernández-Ortega, P., Morita, T., Suh, S. Y., Bruera, E., & Mori, M. (2019). Prognostication in advanced cancer: Update and directions for future research. Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer, 27(6), 1973-1984. https://doi.org/10.1007/s00520-019-04727-y
Igai, Y. (2020). Concept analysis of dignity-centered care for people with chronic progressive disease. Japan Journal of Nursing Science : JJNS, 17(2), e12302. https://doi.org/10.1111/jjns.12302
International Alliance of Carer Organizations (IACO). (n.d.). Home. Retrieved [2025.10.01], from https://internationalcarers.org/
Jacelon, C. S., Connelly, T. W., Brown, R., Proulx, K., & Vo, T. (2004). A concept analysis of dignity for older adults. Journal of Advanced Nursing, 48(1), 76-83. https://doi.org/10.1111/j.1365-2648.2004.03170.x
Jacobson, N. (2009). A taxonomy of dignity: A grounded theory study. BMC International Health and Human Rights, 9, 3. https://doi.org/10.1186/1472-698x-9-3
Jenewein, J., Moergeli, H., Meyer-Heim, T., Muijres, P., Bopp-Kistler, I., Chochinov, H. M., & Peng-Keller, S. (2021). Feasibility, Acceptability, and Preliminary Efficacy of Dignity Therapy in Patients With Early Stage Dementia and Their Family. A Pilot Randomized Controlled Trial. Frontiers in Psychiatry, 12, 795813. https://doi.org/10.3389/fpsyt.2021.795813
Jiang, J., Xie, J., Sun, J., & Sun, Q. (2025). Study on the current status of self-perceived burden and its correlation with caregiver reactions in spinal cord injury patients under the background of medical consortium. Frontiers in Psychology,, 16, 1579861. https://doi.org/10.3389/fpsyg.2025.1579861
Johansson, H., Berterö, C., Jonasson, L. L., & Berg, K. (2023). The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A qualitative study. Chronic Respiratory Disease, 20, 14799731231168897. https://doi.org/10.1177/14799731231168897
Johnston, B., Lawton, S., McCaw, C., Law, E., Murray, J., Gibb, J., Pringle, J., Munro, G., & Rodriguez, C. (2016). Living well with dementia: Enhancing dignity and quality of life, using a novel intervention, Dignity Therapy. International Journal of Older People Nursing, 11(2), 107-120. https://doi.org/10.1111/opn.12103
Kalampokini, S., Hommel, A., Lorenzl, S., Ferreira, J. J., Meissner, W. G., Odin, P., Bloem, B. R., Dodel, R., & Schrag, A. E. (2022). Caregiver burden in late-stage parkinsonism and its associations. Journal of Geriatric Psychiatry and Neurology, 35(1), 110-120. https://doi.org/10.1177/0891988720968263
Kim, B., Hwang, I. C., Ahn, H. Y., & Lee, J. W. (2025). Family relationships and caregiver burden among family caregivers of patients with terminal cancer. BMC Palliative Care, 24(1), 207. https://doi.org/10.1186/s12904-025-01855-7
Kisvetrová, H., Bretšnajdrová, M., Jurašková, B., & Langová, K. (2024). Personal dignity in people with early-stage dementia: A longitudinal study. Nursing Ethics, 9697330241244495. https://doi.org/10.1177/09697330241244495
Kisvetrová, H., Tomanová, J., Hanáčková, R., Greaves, P. J., & Steven, A. (2022). Dignity and Predictors of Its Change Among Inpatients in Long-Term Care. Clinical Nursing Research, 31(2), 274-283. https://doi.org/10.1177/10547738211036969
Klietz, M. (2022). Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial. Brain Sciences, 12(9). https://doi.org/10.3390/brainsci12091184
Kosberg, J. I., Cairl, R. E., & Keller, D. M. (1990). Components of Burden: Interventive Implications1. The Gerontologist, 30(2), 236-242. https://doi.org/10.1093/geront/30.2.236
Kuharic, M., Sharp, L. K., Turpin, R. S., Mulhern, B., Lee, T. A., Grace Rose, C. E., Monteiro, A., & Pickard, A. S. (2024). Care recipient self-perceived burden: Perspectives of individuals with chronic health conditions or personal experiences with caregiving on caregiver burden in the US. SSM - Qualitative Research in Health, 5, 100398. https://doi.org/https://doi.org/10.1016/j.ssmqr.2024.100398
Kurauchi, G., Endo, M., Odaira, K., Ono, R., Koseki, A., Goto, M., Sato, Y., Kon, S., Watanabe, N., Sugawara, N., Kimura, E., & Takada, H. (2019). Caregiver Burden and Related Factors Among Caregivers of Patients with Myotonic Dystrophy Type 1. Journal of Neuromuscular Diseases, 6(4), 527-536. https://doi.org/10.3233/jnd-190386
Lam, L. T., Chang, H. Y., Natashia, D., Lai, W. S., & Yen, M. (2022). Self-report instruments for measuring patient dignity: A psychometric systematic review. Journal of Advanced Nursing, 78(12), 3952-3973. https://doi.org/10.1111/jan.15436
LeBlanc, R. G., & Jacelon, C. S. (2022). Social Influences on Perceptions of Sense of Control and Attributed Dignity Among Older People Managing Multiple Chronic Conditions. Rehabilitation Nursing : The Official Journal of the Association of Rehabilitation Nurses, 47(3), 92-98. https://doi.org/10.1097/rnj.0000000000000369
Lee, J. E., Shin, D. W., Cho, J., Yang, H. K., Kim, S. Y., Yoo, H. S., Jho, H. J., Shin, J. Y., Cho, B., Park, K., & Park, J. H. (2015). Caregiver burden, patients' self-perceived burden, and preference for palliative care among cancer patients and caregivers. Psychooncology, 24(11), 1545-1551. https://doi.org/10.1002/pon.3827
Lee, L. J., Son, H., Wallen, G. R., Flynn, S., Cox, R., Yang, L., & Ross, A. (2023). Symptom Clusters in Family Caregivers of Hematopoietic Stem Cell Transplantation Recipients: Loneliness as a Risk Factor. Transplantation and Cellular Therapy, 29(1), 50.e51-50.e58. https://doi.org/10.1016/j.jtct.2022.09.025
Lee, M. B., Lee, Y. J., Yen, L. L., Lin, M. H., & Lue, B. H. (1990). Reliability and validity of using a Brief Psychiatric Symptom Rating Scale in clinical practice. Journal of the Formosan Medical Association, 89(12), 1081-1087.
Lee, M. B., Liao, S. C., Lee, Y. J., Wu, C. H., Tseng, M. C., Gau, S. F., & Rau, C. L. (2003). Development and verification of validity and reliability of a short screening instrument to identify psychiatric morbidity. Journal of the Formosan Medical Association, 102(10), 687-694.
Li, H. C., Richardson, A., Speck, P., & Armes, J. (2014). Conceptualizations of dignity at the end of life: Exploring theoretical and cultural congruence with dignity therapy. Journal of Advanced Nursing, 70(12), 2920-2931. https://doi.org/10.1111/jan.12455
Li, Y. (2022). The Confucian concept of human dignity and its implications for bioethics. Developing World Bioethics, 22(1), 23-33. https://doi.org/10.1111/dewb.12312
Li, Y. C., Feng, Y. H., Ma, S. C., & Wang, H. H. (2023). Dignity and Related Factors in Patients with Cancer: A Cross-Sectional Study. Asian Nursing Research, 17(1), 8-14. https://doi.org/10.1016/j.anr.2022.12.001
Li, Y. C., Wang, H. H., & Ho, C. H. (2018). Validity and reliability of the Mandarin version of Patient Dignity Inventory (PDI-MV) in cancer patients. PLoS One, 13(9), e0203111. https://doi.org/10.1371/journal.pone.0203111
Li, Y., & Li, J. (2017). Death with dignity from the Confucian perspective. Theoretical Medicine and Bioethics, 38(1), 63-81. https://doi.org/10.1007/s11017-016-9383-7
Liang, M., Xie, X., Pan, Y., Cheng, A. S. K., & Ye, Z. (2023). A qualitative meta-synthesis of patient dignity from the perspective of caregivers. BMC Geriatrics, 23(1), 351. https://doi.org/10.1186/s12877-023-04071-1
Lim, Y. X., Quah, E. L. Y., Chua, K. Z. Y., Lin Ronggui, C. K., Govindasamy, R., Ong, S. M., Ong, E. K., Phua, G. L. G., & Krishna, L. K. R. (2023). A Systematic Scoping Review on Dignity Assessment Tools. Journal of Pain and Symptom Management. https://doi.org/10.1016/j.jpainsymman.2023.12.008
Liu, B., Lee, K., Sun, C., Wu, D., & Lim, P. Y. (2022). Systematic review on factors associated with self-perceived burden among cancer patients. Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer, 30(10), 8417-8428. https://doi.org/10.1007/s00520-022-07129-9
Liu, C., Zhang, Y., Jiang, H., & Wu, H. (2017). Association between social support and post-traumatic stress disorder symptoms among Chinese patients with ovarian cancer: A multiple mediation model. PLoS One, 12(5), e0177055. https://doi.org/10.1371/journal.pone.0177055
Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International Journal of Nursing Sciences, 7(4), 438-445. https://doi.org/10.1016/j.ijnss.2020.07.012
Loo, Y. X., Yan, S., & Low, L. L. (2022). Caregiver burden and its prevalence, measurement scales, predictive factors and impact: A review with an Asian perspective. Singapore Medical Journal, 63(10), 593-603. https://doi.org/10.11622/smedj.2021033
Lunney, J. R., Lynn, J., Foley, D. J., Lipson, S., & Guralnik, J. M. (2003). Patterns of functional decline at the end of life. JAMA, 289(18), 2387-2392. https://doi.org/10.1001/jama.289.18.2387
Macchi, Z. A., Koljack, C. E., Miyasaki, J. M., Katz, M., Galifianakis, N., Prizer, L. P., Sillau, S. H., & Kluger, B. M. (2020). Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: A palliative care approach. Annals of Palliative Medicine, 9(Suppl 1), S24-s33. https://doi.org/10.21037/apm.2019.10.01
MacKinnon, D. (2008). Introduction to Statistical Mediation Analysis (1st ed.). Routledge. https://doi.org/10.4324/9780203809556
Marbin, D., Piper, S. K., Lehnerer, S., Harms, U., & Meisel, A. (2022). Mental health in myasthenia gravis patients and its impact on caregiver burden. Scientific Reports, 12(1), 19275. https://doi.org/10.1038/s41598-022-22078-3
Martín-Abreu, C. M., Hernández, R., Cruz-Castellanos, P., Fernández-Montes, A., Lorente-Estellés, D., López-Ceballos, H., Ostios-Garcia, L., Antoñanzas, M., Jiménez-Fonseca, P., García-García, T., & Calderon, C. (2022). Dignity and psychosocial related variables in elderly advanced cancer patients. BMC Geriatrics, 22(1), 732. https://doi.org/10.1186/s12877-022-03423-7
Martínez-Campo, Y., Homedes, C., Lazaro, A., Alarcón, R., Campo, D., Riera, M., Domínguez, R., Povedano, M., & Casasnovas, C. (2017). Observational study of patients in Spain with amyotrophic lateral sclerosis: Correlations between clinical status, quality of life, and dignity. BMC Palliative Care, 16(1), 75. https://doi.org/10.1186/s12904-017-0260-6
McPherson, C. J., Wilson, K. G., & Murray, M. A. (2007). Feeling like a burden to others: A systematic review focusing on the end of life. Palliative Medicine, 21(2), 115-128. https://doi.org/10.1177/0269216307076345
McPherson, C. J., Wilson, K. G., Chyurlia, L., & Leclerc, C. (2011). The caregiving relationship and quality of life among partners of stroke survivors: a cross-sectional study. Health and Quality of Life Outcomes, 9, 29. https://doi.org/10.1186/1477-7525-9-29
McPherson, C. J., Wilson, K. G., Lobchuk, M. M., & Brajtman, S. (2007). Self-perceived burden to others: patient and family caregiver correlates. Journal of Palliative Care, 23(3), 135–142.
Modrzejewska-Zielonka, E., Ren, M., Młodak, A., Marcinkowski, J. T., & Zielonka, D. (2022). Huntington's Disease Progression and Caregiver Burden. European Neurology, 85(5), 398-403. https://doi.org/10.1159/000524146
Moradoghli, F., Darvishpoor Kakhki, A., & Esmaeili, R. (2022). The association between frailty and dignity in community-dwelling older people. BMC Geriatrics, 22(1), 344. https://doi.org/10.1186/s12877-022-03056-w
Morgan, S. P., Lengacher, C. A., & Rodriguez, C. S. (2022). Caregiver burden in caregivers of patients with advanced stage cancer: A concept analysis. European Journal of Oncology Nursing : The Official Journal of European Oncology Nursing Society, 60, 102152. https://doi.org/10.1016/j.ejon.2022.102152
Murray, S. A., Kendall, M., Boyd, K., & Sheikh, A. (2005). Illness trajectories and palliative care. BMJ, 330(7498), 1007-1011. https://doi.org/10.1136/bmj.330.7498.1007
Oechsle, K., Wais, M. C., Vehling, S., Bokemeyer, C., & Mehnert, A. (2014). Relationship Between Symptom Burden, Distress, and Sense of Dignity in Terminally Ill Cancer Patients. Journal of Pain and Symptom Management, 48(3), 313-321. https://doi.org/https://doi.org/10.1016/j.jpainsymman.2013.10.022
Pang, X., Li, F., & Zhang, Y. (2022). The Role of Mental Adjustment in Mediating Post-Traumatic Stress Disorder Symptoms and Social Support in Chinese Ovarian Cancer Patients: A Cross-Sectional Study. Psychology Research and Behavior Management, 15, 2183-2191. https://doi.org/10.2147/prbm.S372660
Pop, R. S., Mosoiu, D., & Tint, D. (2022). Caregiver Burden Correlates With Complexity of Drug Regimen in Non-oncological Palliative Medicine. American Journal of Therapeutics, 29(6), e616-e624. https://doi.org/10.1097/mjt.0000000000001558
Proulx, K., & Jacelon, C. (2004). Dying with dignity: the good patient versus the good death. The American Journal of Hospice & Palliative care, 21(2), 116-120. https://doi.org/10.1177/104990910402100209
Rafati, F., Mashayekhi, F., & Dastyar, N. (2020). Caregiver Burden and Spiritual Well-being in Caregivers of Hemodialysis Patients. Journal of Religion and Health, 59(6), 3084-3096. https://doi.org/10.1007/s10943-019-00939-y
Rantanen, P., Chochinov, H. M., Emanuel, L. L., Handzo, G., Wilkie, D. J., Yao, Y., & Fitchett, G. (2022). Existential Quality of Life and Associated Factors in Cancer Patients Receiving Palliative Care. Journal of Pain and Symptom Management, 63(1), 61-70. https://doi.org/10.1016/j.jpainsymman.2021.07.016
Rehmann-Sutter, C. (2019). Self-perceived burden to others as a moral emotion in wishes to die. A conceptual analysis. Bioethics, 33(4), 439-447. https://doi.org/10.1111/bioe.12603
Rodríguez-Prat, A., Balaguer, A., Crespo, I., & Monforte-Royo, C. (2019). Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review. Bioethics, 33(4), 411-420. https://doi.org/10.1111/bioe.12562
Rong, T., Xing, D., Xianzong, C., & Ruian, L. (2025). A study of the mediating effect of self-perceived burden between meaning in life and dignity in disabled patients based on a dignity theory model. Frontiers in Psychology, 16, 1519537. https://doi.org/10.3389/fpsyg.2025.1519537
Salpeter, S. R., Luo, E. J., Malter, D. S., & Stuart, B. (2012). Systematic review of noncancer presentations with a median survival of 6 months or less. The American Journal of Medicine, 125(5), 512.e511-516. https://doi.org/10.1016/j.amjmed.2011.07.028
Shukla, R., Thakur, E., Bradford, A., & Hou, J. K. (2018). Caregiver Burden in Adults With Inflammatory Bowel Disease. Clinical Gastroenterology and Hepatology : The Official Clinical Practice journal of the American Gastroenterological Association, 16(1), 7-15. https://doi.org/10.1016/j.cgh.2017.05.020
Tang, B., Fu, Y., Liu, B., & Yi, Q. (2022). Self-perceived burden and associated factors in Chinese adult epilepsy patients: A cross-sectional study. Frontiers in Neurology, 13, 994664. https://doi.org/10.3389/fneur.2022.994664
Thompson, G. N., & Chochinov, H. M. (2008). Dignity-based approaches in the care of terminally ill patients. Current Opinion in Supportive and Palliative Care, 2(1), 49-53. https://doi.org/10.1097/SPC.0b013e3282f4cb15
Totton, N., Lin, J., Julious, S., Chowdhury, M., & Brand, A. (2023). A review of sample sizes for UK pilot and feasibility studies on the ISRCTN registry from 2013 to 2020. Pilot and Feasibility Studies, 9(1), 188. https://doi.org/10.1186/s40814-023-01416-w
Wang, G., Cheng, Q., Wang, Y., Deng, Y. L., Ren, R. J., Xu, W., Zeng, J., Bai, L., & Chen, S. D. (2008). The metric properties of Zarit caregiver burden scale: Validation study of a Chinese version. Alzheimer Disease and Associated Disorders, 22(4), 321-326. https://doi.org/10.1097/WAD.0b013e3181902334
World Health Organization. (2020, August 5). Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care
Xiao, J., Ng, M. S. N., Yan, T., Chow, K. M., & Chan, C. W. H. (2021). How patients with cancer experience dignity: An integrative review. Psycho-Oncology, 30(8), 1220-1231. https://doi.org/10.1002/pon.5687
Yang, W., Zhang, X., Li, Y., Lv, Q., Gao, X., Lin, M., & Zang, X. (2023). Advanced heart failure patients and family caregivers health and function: randomised controlled pilot trial of online dignity therapy. BMJ Supportive & Palliative Care. https://doi.org/10.1136/spcare-2022-003945
Yeni, K., Tulek, Z., Cavusoglu, A., Dunya, C. P., Erden, S. O., Bostan, N. S., Bebek, N., & Baykan, B. (2024). Caregiver burden and its predictors in adult epilepsy patients. Epilepsy & Behavior, 153, 109685. https://doi.org/10.1016/j.yebeh.2024.109685
Yuen, E. Y. N., & Wilson, C. J. (2021). The Relationship between Cancer Caregiver Burden and Psychological Outcomes: The Moderating Role of Social Connectedness. Current Oncology, 29(1), 14-26. https://doi.org/10.3390/curroncol29010002
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649-655. https://doi.org/10.1093/geront/20.6.649