Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study.

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.

End-of-life communication experiences within families of people with advanced cancer in China: A qualitative study.

BACKGROUND: Effective communication between people with advanced cancer and their family members on end-of-life issues has a profound impact on meeting needs and improving quality of life of both sides. Several studies have shown that patient-family end-of-life communication is not always adequate and optimal. Little is known about the experiences of end-of-life communication within families of people with advanced cancer in China. OBJECTIVES: The aim of this study was to explore the experiences of end-of-life communication between people with advanced cancer and their family members in China and the factors influencing their communication. DESIGN: A qualitative descriptive study using semi-structured interviews was conducted. SETTINGS: This study took place at three tertiary hospitals in Beijing, China from July 2018 to October 2019. PARTICIPANTS: Purposive sampling was employed to select participants. Eleven people with advanced cancer and 14 family members were finally interviewed. METHODS: Audio-recordings were transcribed verbatim and entered into qualitative data analysis software. Qualitative data were analyzed using a content analysis approach. RESULTS: Five themes and associated categories were identified: (1) silence without intention; (2) silence with intention; (3) silence-breaking; (4) openness without restraint; and (5) the influencing factors of end-of-life communication. These four states of end-of-life communication have different essential characteristics and change under the influence of the awareness of disease diagnosis, awareness and acceptance of the incurability of disease, and fear of impending death. CONCLUSIONS: Affected by the willingness and ability to communicate about end-of-life issues, people with advanced cancer and their family members present four communication states, namely silence without intention, silence with intention, silence-breaking, and openness without restraint. The study provides an insight into end-of-life communication experiences within families where different communication states are interconnected. The findings enable professionals to evaluate the communication and its influencing factors, so as to provide feasible and effective end-of-life communication support. REGISTRATION: Not registered.