RESUMO
Globally, there is a growing acknowledgment of Indigenous Peoples' rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it's crucial to apply these standards in research involving Indigenous communities. Our study, therefore, aims to systematically review research using routinely collected health data of Indigenous Peoples, understanding the Indigenous Data Governance approaches and the associated advantages and challenges. We searched electronic databases for studies from 2013 to 2022, resulting in 85 selected articles. Of these, 65 (77%) involved Indigenous Peoples in the research, and 60 (71%) were authored by Indigenous individuals or organisations. While most studies (93%) provided ethical approval details, only 18 (21%) described Indigenous guiding principles, 35 (41%) reported on data sovereignty, and 28 (33%) addressed consent. This highlights the increasing focus on Indigenous Data Governance in utilising health data. Leveraging existing data sources in line with Indigenous data governance principles is vital for better understanding Indigenous health outcomes.
RESUMO
BACKGROUND: It is well known that cancer greatly affects not only patients but also their families. However, few studies on caregivers' quality of life have been conducted within the Asian population. METHODS: We carried out a survey using well-constructed, self-administered questionnaires that were answered by pairs of patients with cancer and their spouse-caregivers (n=100 pairs) who were visiting the cancer daycare center at Seoul National University Hospital. The caregiver's quality of life (QOL) was assessed by the Korean version of the Caregiver Quality Of Life Index-Cancer (CQOLC), which contains four domains along with other items. Possible determinants of caregiver QOL were categorized according to sociodemographic factors, caregiver burden, health risk factors, spirituality, and family function. Multiple linear regression analysis was used to identify the factors associated with spouse-caregivers' QOL. RESULTS: Having a reason or purpose for living was associated with the total CQOLC score (ß=3.408, p=0.025) and positive adaptation (ß=1.035, p=0.009). Family function was associated with total CQOLC and all the domains except burden, and caregivers' religion was associated with total CQOLC. Monthly household income and cigarette smoking status were associated with financial concern. CONCLUSIONS: Having a reason and purpose for living, which is an aspect of spirituality, was a relevant factor in the spousal caregivers' QOL. Future research is needed to confirm the association between spirituality and caregivers' QOL and whether interventions supporting spirituality could improve their QOL.