RESUMEN
This systematic review examined the role of social environment in pre-death grief experiences of dementia caregivers. Ninety-three Chinese and English articles were included from a comprehensive search of empirical studies using nine databases. Six social environment domains were generated: the person with dementia, dyadic relationship, family members and the wider community, health and social care services, place of care, and social-cultural contexts. A complex interplay between caregivers and their social environments that aggravate and attenuate pre-death grief experiences is evident. Research has focused mainly on the effects of people with dementia and dyadic relationships and has paid modest attention to the effects of family, relatives, and health and social care services. Caregivers' experiences with their friends, fellow caregivers, the wider community, and social-cultural norms are influential but understudied. Future research could adopt a systems thinking approach with sociological perspectives to generate a comprehensive and nuanced understanding of pre-death grief experiences.
RESUMEN
OBJECTIVE: To understand family caregivers' decision-making process to place their family members with terminal cancer in inpatient hospice care, especially in the social-cultural contexts whereby the caregivers have a dominant say about the care of their seriously ill family members. METHODS: A qualitative study with a phenomenological approach was undertaken to understand the lived experience of caregivers of persons with terminal cancer in the decision-making process. Semi-structured qualitative interviews were conducted with a purposive sample of 17 caregivers in Shanghai, China. Thematic analysis was used to analyze the data. RESULTS: The caregivers underwent a winding and socioculturally mediated four-stage process. The stages are (i) trigger for alternatives: lost hope for a cure, (ii) meandering the see-saw process, (iii) the last straws: physical limitations and witnessing unbearable suffering, and (iv) the aftermath: acceptance versus lingering hope. Caregivers' attitudes towards death and their family members with advanced cancer expressed care wishes influence the state of the aftermath. CONCLUSIONS: Chinese sociocultural values and beliefs about caregiving and death provide insightful explanations for the observed process. PRACTICAL IMPLICATIONS: Training healthcare professionals in cultural competence, developing an effective hospice referral system, and delivering socioculturally acceptable death education are critical interventions to facilitate better decision-making experiences.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Neoplasias , Cuidado Terminal , Humanos , Cuidadores , Pacientes Internos , China , Investigación Cualitativa , Familia , Neoplasias/terapiaRESUMEN
Hong Kong experienced the SARS pandemic in 2003. Seventeen years later, the Covid-19 pandemic now challenges Hong Kong and the world. This study aims to unveil the impact of the pandemic on health social workers. One hundred and sixty-six health care social workers in Hong Kong were recruited to join a cross-sectional online survey from November 2020 to March 2021. This paper includes the analysis of the demographic information, fear of contamination, resilience, perceived social support and physical health only. Irrespective of the demographic background, the level of fear of contamination, resilience, perceived social support and physical health were similar. The mean scores of the two dimensions of fear of contamination (Harm avoidance: m = 7.49, s.d. = 3.25; Disgust avoidance: m = 7.75, s.d. = 2.90) were higher than those of general public and clinical samples with Obsessive-Compulsive Disorder. No moderation effects were found in resilience and perceived social support in the relationship of fear of contamination and physical health. Instead, direct effects were shown.The impact of the pandemic on health social workers was universal. Psychoeducational programs to alleviate the fear of contamination and organizational-level interventions to improve workplace social support are highly needed.