Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study
Abstract Background Most Chinese patients chose to die at home, therefore there is a reliance on the family caregivers to be involved in their palliative care. The needs and coping strategies of family caregivers in home-based palliative care are rooted in culture. Little is known about the needs an...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-12-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-023-01315-0 |
| _version_ | 1797388005604851712 |
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| author | Xiaotian Zhang Tianmeng Xu Yuan Qin Minghui Wang Zhaoyu Li Jingyu Song Qianqian Tang Zidan Wang Lijie Xu Lingling Wu Peng Yue |
| author_facet | Xiaotian Zhang Tianmeng Xu Yuan Qin Minghui Wang Zhaoyu Li Jingyu Song Qianqian Tang Zidan Wang Lijie Xu Lingling Wu Peng Yue |
| author_sort | Xiaotian Zhang |
| collection | DOAJ |
| description | Abstract Background Most Chinese patients chose to die at home, therefore there is a reliance on the family caregivers to be involved in their palliative care. The needs and coping strategies of family caregivers in home-based palliative care are rooted in culture. Little is known about the needs and coping strategies of family caregivers taking care of dying patients at home. Methods A field study using semi-structured interview, participant observation, documents and records collection was employed. The study was conducted in two palliative care outpatient departments in tertiary hospitals and four communities in Beijing, China from March 2021 to July 2022. Using purposive sampling, twenty-five family caregivers were recruited. All collected data were analyzed using content analysis approach. Results Five themes emerged, including three care needs and two coping strategies. Family caregivers need to learn care skills and acquire care resources, including (i) decision-making about home-based palliative care, (ii) improving patient’s quality of life, and (iii) signs of final hours and funeral procedures. In facing the care burden, family caregivers coped by (iv) balancing the roles of caregivers and individuals: giving priority to patient care while maintaining their own normal life. In facing the death of a loved one, family caregivers responded by (v) making room for coming death by facing death indirectly and “rescuing” patients for consolation while preparing for the coming death. Conclusion Family caregivers strive to balance the roles of being caregivers and being themselves. As caregivers, they actively prepare patients for good death with no regrets. As individuals, they preserve themselves from being hurt to maintain normal life. The needs of family caregivers focus on caregiver role and are manifested in care skills and resources. Trial registration Not registered. |
| first_indexed | 2024-03-08T22:34:26Z |
| format | Article |
| id | doaj.art-87d9240781814d8fbd4e9b5a428eb85e |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-03-08T22:34:26Z |
| publishDate | 2023-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-87d9240781814d8fbd4e9b5a428eb85e2023-12-17T12:33:34ZengBMCBMC Palliative Care1472-684X2023-12-0122111110.1186/s12904-023-01315-0Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field studyXiaotian Zhang0Tianmeng Xu1Yuan Qin2Minghui Wang3Zhaoyu Li4Jingyu Song5Qianqian Tang6Zidan Wang7Lijie Xu8Lingling Wu9Peng Yue10School of Nursing, Capital Medical UniversityWenzhou Medical University, University TownHospice & Palliative Care Department Ward of Beijing Haidian HospitalPuhuangyu community health centerSchool of Nursing, Capital Medical UniversitySchool of Nursing, Capital Medical UniversitySchool of Nursing, Capital Medical UniversitySchool of Nursing, Capital Medical UniversitySchool of Nursing, Capital Medical UniversityPuhuangyu community health centerSchool of Nursing, Capital Medical UniversityAbstract Background Most Chinese patients chose to die at home, therefore there is a reliance on the family caregivers to be involved in their palliative care. The needs and coping strategies of family caregivers in home-based palliative care are rooted in culture. Little is known about the needs and coping strategies of family caregivers taking care of dying patients at home. Methods A field study using semi-structured interview, participant observation, documents and records collection was employed. The study was conducted in two palliative care outpatient departments in tertiary hospitals and four communities in Beijing, China from March 2021 to July 2022. Using purposive sampling, twenty-five family caregivers were recruited. All collected data were analyzed using content analysis approach. Results Five themes emerged, including three care needs and two coping strategies. Family caregivers need to learn care skills and acquire care resources, including (i) decision-making about home-based palliative care, (ii) improving patient’s quality of life, and (iii) signs of final hours and funeral procedures. In facing the care burden, family caregivers coped by (iv) balancing the roles of caregivers and individuals: giving priority to patient care while maintaining their own normal life. In facing the death of a loved one, family caregivers responded by (v) making room for coming death by facing death indirectly and “rescuing” patients for consolation while preparing for the coming death. Conclusion Family caregivers strive to balance the roles of being caregivers and being themselves. As caregivers, they actively prepare patients for good death with no regrets. As individuals, they preserve themselves from being hurt to maintain normal life. The needs of family caregivers focus on caregiver role and are manifested in care skills and resources. Trial registration Not registered.https://doi.org/10.1186/s12904-023-01315-0Coping strategyFamily caregiversField studyHome-based palliative careNeed |
| spellingShingle | Xiaotian Zhang Tianmeng Xu Yuan Qin Minghui Wang Zhaoyu Li Jingyu Song Qianqian Tang Zidan Wang Lijie Xu Lingling Wu Peng Yue Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study BMC Palliative Care Coping strategy Family caregivers Field study Home-based palliative care Need |
| title | Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study |
| title_full | Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study |
| title_fullStr | Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study |
| title_full_unstemmed | Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study |
| title_short | Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study |
| title_sort | exploring the needs and coping strategies of family caregivers taking care of dying patients at home a field study |
| topic | Coping strategy Family caregivers Field study Home-based palliative care Need |
| url | https://doi.org/10.1186/s12904-023-01315-0 |
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