Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies

Abstract

ObjectiveTo investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.MethodsA search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.ResultsThe literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients’ needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers’ needs included needs to care for and improve the quality of life of patients, and to care for themselves well.ConclusionThis study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients’ demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.

Association of rurality, type of primary caregiver and place of death with end-of-life medical expenditures among the oldest-old population in China

“…More importantly, the prevalence of home death increased from 86.0% in 1998 to 89.5% in 2018, and similar trends were observed among the urban and rural deceased, suggesting that more intensive education, training and support for informal caregivers is warranted [ 33 , 35 – 37 ]. Informal caregiving for elderly people with disabilities has been commonly used to provide services similar to those provided to paid formal caregivers in China [ 38 ]. However, with limited community-based care, family caregivers are unaware of what they do not know or should do.…”

Building bridges of excellence: a comprehensive competence framework for nurses in hospice and palliative care—a mixed method study

“…A previous systematic review summarized seven care needs of Chinese dying patients and their family caregivers (Fig. 3 ) [ 64 ]. The competences for meeting these needs are all covered by our competence framework.…”

The family caregiver needs assessment questionnaire for home hospice care of the dying elderly in Mainland China: Tool development and psychometric evaluation

“…In the literature review, Chinese and international databases were searched to understand family caregiver caregiving experiences and unmet needs. 2,10,13,15 Furthermore, the Chinese mature caregiver needs tool was retrieved as a reference, including the Chinese version of CNSAT and the Assessment of Questionnaire about the Needs of Dependents of Advanced Cancer Patients. 14,16 In the caregiver interviews, the purposive sampling method was used to recruit family caregivers of the dying elderly who received home hospice care services in Jinzhou, Liaoning Province.…”