Research Article
Year 2023,
, 91 - 102, 30.09.2023
Abstract
References
- 1. WHO. Palliative Care https://www.who.int/news-room/fact-sheets/detail/palliative-care
- 2. The Worldwide Hospice Palliative Care Alliance (WHPCA). Global Atlas of Palliative Care, 2020, 2. Edt.
- 3. Family Caregiver Alliance. © 2016 Family Caregiver Alliance
- 4. CDC. Caregiving for Family and Friends — A Public Health Issue
- 5. Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011; 14(7):864-869.
- 6. Gérain P, Zech E. Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Front Psychol. 2019;10:1748.
- 7. Perpiñá-Galvañ J, Orts-Beneito N, Fernández-Alcántara M, García-Sanjuán S, García-Caro MP, Cabañero-Martínez MJ. Level of Burden and Health-Related Quality of Life in Caregivers of Palliative Care Patients. Int J Environ Res Public Health. 2019;16(23):4806.
- 8. Hategan A, Bourgeois JA, Cheng T, Young J. Caregiver Burnout. In: Geriatric Psychiatry Study Guide: Mastering the Competencies, Springer International Publishing, 1st ed. 2018.
- 9. Maslach C, Jackson S. E, Leiter MP. Maslach burnout inventory, 3rd ed. Consulting Psychologists Press, 1996.
- 10. Burn-out an “occupational phenomenon”: International Classification of Diseases. Geneva: WHO, 2020. [cited 2022 July 10].
- 11. Recognizing Caregiver Burnout. Geneva: WHO, 2020.
- 12. Alam S, Hannon B, Zimmermann C. Palliative Care for Family Caregivers. J Clin Oncol. 2020; 38(9):926-936.
- 13. Berry LL, Dalwadi SM, Jacobson JO. Supporting the Supporters: What Family Caregivers Need to Care for a Loved One with Cancer. J Oncol Pract. 2017; 13(1):35-41.
- 14. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798-803.
- 15. Anderson F, Downing GM, Hill J, Casorso L, Lerch N. Palliative performance scale (PPS): a new tool. J Palliat Care. 1996;12(1):5-11.
- 16. Oğuz G, Şenel G, Koçak N, Karaca Ş. The Turkish Validity and Reliability Study of Palliative Performance Scale. Asia Pac J Oncol Nurs. 2021;8(4):413-418. Published 2021 May 31.
- 17. Küçükgüçlü Ö, Esen A, Yener G. The reliability and validity of the caregiver burden ınventory in Turkey. Journal of Neurological Sciences, 2009; 26(1).
- 18. Ergin C. Burnout in physicians and nurses and adaptation of the Maslach Burnout Inventory. VII. National Psychology Congress, Ankara, Publications of Organization of Turkish Psychologists, 1992; pp.143-154.
- 19. Çam O. Examination of validity and reliability of Maslach Burnout Inventory in a sample of education nurses. J. Ege Univ. Sch. Nurs, 1996;12(3): 61-69
- 20. Alsirafy SA, Nagy R, Hassan AD, et al. Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries. BMC Palliat Care. 2021; 20(1):163. Published 2021 Oct 18.
- 21. Ahmad Zubaidi ZS, Ariffin F, Oun CTC, Katiman D. Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC Palliat Care. 2020;19(1):186. Published 2020 Dec 8.
- 22. Krug K, Miksch A, Peters-Klimm F, Engeser P, Szecsenyi J. Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study. BMC Palliat Care. 2016; 15:4. Published 2016 Jan 15.
- 23. Saraçoğlu E, Altay B, Dönmez MV. Care Burden and Burnout Levels in Caregivers Family Members of Cancer Patients. The Journal of Academic Social Science,2022;10(124): 370-382.
- 24. Egici MT, Kök Can M, Toprak D, Zeren Öztürk G, Esen ES, Özen B, et al. Care Burden and Burnout Status of Caregivers Whose Patients are Treated in Palliative Care Centers. JAREN, 2019;5(2):123 - 131.
- 25. Cross AJ, Garip G, Sheffield D. The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research. Psychol Health. 2018;33(11):1321-1342.
- 26. Guerriere D, Husain A, Zagorski B, et al. Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada. Health Soc Care Community. 2016;24(4):428-438.
- 27. Schwartz K, Beebe-Dimmer J, Hastert TA, et al. Caregiving burden among informal caregivers of African American cancer survivors. J Cancer Surviv. 2021;15(4):630-640.
- 28. Fu W, Li J, Fang F, Zhao D, Hao W, Li S. Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China. BMC Palliat Care. 2021;20(1):167. Published 2021 Oct 22.
- 29. Janze A, Henriksson A. Preparing for palliative caregiving as a transition in the awareness of death: family carer experiences. Int J Palliat Nurs. 2014;20(10):494-501.
- 30. Gérain P, Zech E. Do informal caregivers experience more burnout? A meta-analytic study. Psychol Health Med. 2021;26(2):145-161.
- 31. Hiyoshi-Taniguchi K, Becker CB, Kinoshita A. What Behavioral and Psychological Symptoms of Dementia Affect Caregiver Burnout?. Clin Gerontol. 2018; 41(3):249-254.
The Evaluation of the Burden and Burnout Levels of the Caregivers of the Inpatients in Palliative Care
Abstract
The study was conducted to evaluate the care burden and burnout levels of caregivers for patients hospitalized in palliative care. This descriptive study was conducted with 76 caregivers who were hospitalized in the palliative care services of a university and state hospital between 02.12.2019 and 02.06.2022 in Turkey. After obtaining the permissions of the ethics committee and the institution, the data were collected with the Descriptive Characteristics Form, Palliative Performance Scale, Caregivers Burden Inventory, and Maslach Burnout Inventory. The total score of the Caregivers Burden Inventory was 50.31±15.37, sub-dimensions of time-dependency burden, developmental burden, physical burden, social burden, and emotional burden scores were 18.30±3.23, 10.94±6.03, 13.54±5.99, 4.09±4.68, and 3.42±3.89, respectively. The Maslach Burnout Inventory sub-dimensions were emotional exhaustion, depersonalization, and personal accomplishment, with mean scores of 24.78±10.33, 11.59±4.20, and 28.64±5.67, respectively. The mean Palliative Performance Scale score of the patients was 32.76±16.86. As the burden of caregivers increased, so did their exhaustion scores. Caregivers had moderate care burdens, high time dependency and physical burdens, high emotional exhaustion, and low personal accomplishment burnout. All patients who were cared for were bedridden. The presence of incontinence in the patient affected the time dependency burden of the caregivers, and the presence of chronic disease in the caregiver and living with the patient also affected the caregivers' emotional exhaustion. These results show that studies must be conducted to develop multidisciplinary interventions to reduce caregivers’ care burden and burnout.
Keywords
Ethical Statement
Non-Interventional Clinical Research Ethics Committee of a university (Sivas Cumhuriyet University, Decision No: 2019-11/19). Written permission was obtained from the Rectorate of the University (93596471-774.99-E.32863) and the Chief Physician of Sivas Numune Hospital (76728045-799-2557), where the implementation was made. The study was conducted following the principles of the Declaration of Helsinki.
Supporting Institution
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Thanks
We would like to thank the informal caregivers who participated in this study.
References
- 1. WHO. Palliative Care https://www.who.int/news-room/fact-sheets/detail/palliative-care
- 2. The Worldwide Hospice Palliative Care Alliance (WHPCA). Global Atlas of Palliative Care, 2020, 2. Edt.
- 3. Family Caregiver Alliance. © 2016 Family Caregiver Alliance
- 4. CDC. Caregiving for Family and Friends — A Public Health Issue
- 5. Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011; 14(7):864-869.
- 6. Gérain P, Zech E. Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Front Psychol. 2019;10:1748.
- 7. Perpiñá-Galvañ J, Orts-Beneito N, Fernández-Alcántara M, García-Sanjuán S, García-Caro MP, Cabañero-Martínez MJ. Level of Burden and Health-Related Quality of Life in Caregivers of Palliative Care Patients. Int J Environ Res Public Health. 2019;16(23):4806.
- 8. Hategan A, Bourgeois JA, Cheng T, Young J. Caregiver Burnout. In: Geriatric Psychiatry Study Guide: Mastering the Competencies, Springer International Publishing, 1st ed. 2018.
- 9. Maslach C, Jackson S. E, Leiter MP. Maslach burnout inventory, 3rd ed. Consulting Psychologists Press, 1996.
- 10. Burn-out an “occupational phenomenon”: International Classification of Diseases. Geneva: WHO, 2020. [cited 2022 July 10].
- 11. Recognizing Caregiver Burnout. Geneva: WHO, 2020.
- 12. Alam S, Hannon B, Zimmermann C. Palliative Care for Family Caregivers. J Clin Oncol. 2020; 38(9):926-936.
- 13. Berry LL, Dalwadi SM, Jacobson JO. Supporting the Supporters: What Family Caregivers Need to Care for a Loved One with Cancer. J Oncol Pract. 2017; 13(1):35-41.
- 14. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798-803.
- 15. Anderson F, Downing GM, Hill J, Casorso L, Lerch N. Palliative performance scale (PPS): a new tool. J Palliat Care. 1996;12(1):5-11.
- 16. Oğuz G, Şenel G, Koçak N, Karaca Ş. The Turkish Validity and Reliability Study of Palliative Performance Scale. Asia Pac J Oncol Nurs. 2021;8(4):413-418. Published 2021 May 31.
- 17. Küçükgüçlü Ö, Esen A, Yener G. The reliability and validity of the caregiver burden ınventory in Turkey. Journal of Neurological Sciences, 2009; 26(1).
- 18. Ergin C. Burnout in physicians and nurses and adaptation of the Maslach Burnout Inventory. VII. National Psychology Congress, Ankara, Publications of Organization of Turkish Psychologists, 1992; pp.143-154.
- 19. Çam O. Examination of validity and reliability of Maslach Burnout Inventory in a sample of education nurses. J. Ege Univ. Sch. Nurs, 1996;12(3): 61-69
- 20. Alsirafy SA, Nagy R, Hassan AD, et al. Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries. BMC Palliat Care. 2021; 20(1):163. Published 2021 Oct 18.
- 21. Ahmad Zubaidi ZS, Ariffin F, Oun CTC, Katiman D. Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC Palliat Care. 2020;19(1):186. Published 2020 Dec 8.
- 22. Krug K, Miksch A, Peters-Klimm F, Engeser P, Szecsenyi J. Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study. BMC Palliat Care. 2016; 15:4. Published 2016 Jan 15.
- 23. Saraçoğlu E, Altay B, Dönmez MV. Care Burden and Burnout Levels in Caregivers Family Members of Cancer Patients. The Journal of Academic Social Science,2022;10(124): 370-382.
- 24. Egici MT, Kök Can M, Toprak D, Zeren Öztürk G, Esen ES, Özen B, et al. Care Burden and Burnout Status of Caregivers Whose Patients are Treated in Palliative Care Centers. JAREN, 2019;5(2):123 - 131.
- 25. Cross AJ, Garip G, Sheffield D. The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research. Psychol Health. 2018;33(11):1321-1342.
- 26. Guerriere D, Husain A, Zagorski B, et al. Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada. Health Soc Care Community. 2016;24(4):428-438.
- 27. Schwartz K, Beebe-Dimmer J, Hastert TA, et al. Caregiving burden among informal caregivers of African American cancer survivors. J Cancer Surviv. 2021;15(4):630-640.
- 28. Fu W, Li J, Fang F, Zhao D, Hao W, Li S. Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China. BMC Palliat Care. 2021;20(1):167. Published 2021 Oct 22.
- 29. Janze A, Henriksson A. Preparing for palliative caregiving as a transition in the awareness of death: family carer experiences. Int J Palliat Nurs. 2014;20(10):494-501.
- 30. Gérain P, Zech E. Do informal caregivers experience more burnout? A meta-analytic study. Psychol Health Med. 2021;26(2):145-161.
- 31. Hiyoshi-Taniguchi K, Becker CB, Kinoshita A. What Behavioral and Psychological Symptoms of Dementia Affect Caregiver Burnout?. Clin Gerontol. 2018; 41(3):249-254.
There are 31 citations in total.
Details
| Primary Language | English |
|---|---|
| Subjects | Palliative Care |
| Journal Section | Surgical Science Research Articles |
| Authors | |
| Publication Date | September 30, 2023 |
| Acceptance Date | September 20, 2023 |
| Published in Issue | Year 2023 |