Care networks in later life: A comparative study of five communities in Indonesia using ethnography and surveys

随着年龄的增长，他们有时需要照顾或日常活动的实际帮助。通常家庭成员提供大部分的护理。但是家庭变得越来越小。成年子女离开。妇女外出工作和照顾年幼的孩子。并不是每个老人都有孩子。这些趋势使家庭更难照顾。此外，老年人的护理需求变得更加复杂。他们可能患有多种健康问题和残疾，如痴呆症，或需要长期护理。除非不同的照顾者合作，否则老年人可能得不到充分的照顾，照顾者负担过重。这就提出了本研究的核心问题：如何在快速变化的社会中为老年人提供可接受的护理，而不给提供护理的人造成不可持续或不公平的负担？为了回答这个问题，我们首先需要详细回答这些问题：老年人有什么护理需求？谁提供护理，为什么？可接受的护理是什么样子的，需要护理的人是如何被感知的？谁没有得到适当的照顾，为什么？该项目为世界第四大人口国印度尼西亚解决这些问题。这是一个快速变化的多民族国家。有些地区有核心家庭，如英国;有些地区有复杂家庭，如印度或中国。许多家庭很穷，而且贫富差距很大。这些方面使它成为一个有趣的国家进行比较研究，从中可以得出更广泛的经验教训，照顾提供晚年生活。我们的方法是首先在五个不同的社区进行民族志研究。这涉及一名研究人员生活在研究人群中，观察日常生活，并反复采访需要照顾的老年人及其照顾者。我们选择这些社区是因为他们已经在为另一个项目进行研究，该项目由澳大利亚资助，与我们有联系。这意味着研究人员了解社区，我们可以共享数据。一旦我们知道老年人需要什么样的护理，谁提供护理，什么样的护理是可以接受的，护理的负担是什么，我们将为在同一社区进行的家庭调查设计问题。这将使我们能够分析某些安排或问题的普遍程度，以及男女、贫富和不同社区之间是否存在差异。通过纳入印度尼西亚全国调查中使用的问题，我们也可以将我们的研究结果与这些调查进行比较。三个想法是我们研究的核心，并抓住了我们的主要理论贡献所在。首先，我们认为关怀是一种文化实践。我们的意思是，文化塑造了对护理提供者的偏好，什么是可接受的护理，以及依赖对一个人的社会价值的影响。这就是为什么我们使用民族志，它揭示了当地的价值观和偏好，也是为什么我们比较印度尼西亚境内的种族群体。其次，我们认识到，护理往往是由家庭成员、邻居、卫生保健提供者和志愿者提供的，护理需求也在不断变化。这就是为什么我们收集人们的完整护理网络数据的原因。我们还寻求人们的生活史，以分析晚年的护理如何与老年人过去的贡献有关。第三，我们了解到老年人在性别、财富、家庭网络等方面存在差异，因此我们收集了人们的经济、人口和社会地位信息，并对各亚组的护理进行了比较。我们的研究非常及时，因为世界卫生组织（2016）呼吁发展中国家实施可持续的长期护理系统。印度尼西亚政府希望发展长期护理系统，地区政府希望满足当地的护理需求。为此，他们需要知道目前谁在提供护理，什么工作效果好，如何支持家庭护理，以及护理提供方面的差距在哪里。我们的目标是提供这些知识。

As people age, they sometimes need care or practical help with daily activities. Usually family members provide most of this care. But families are becoming smaller. Adult children move away. Women go out to work and care for young children. Not every older person has children. These trends are making it more difficult for families to care. Additionally older people's care needs are becoming more complex. They may suffer from several health problems and disabilities, such as dementia, or need care over long periods. Unless different carers cooperate, older people may receive inadequate care and carers become overburdened. This raises the central question for this research: How can acceptable care for older people in rapidly changing societies be developed without creating unsustainable or unfair burdens on those providing the care? In order to answer this, we first need detailed answers to these questions: What care needs do older people have? Who provides care and why? What does acceptable care look like, and how are people who need care perceived? Who doesn't get appropriate care and why?This project addresses these questions for Indonesia, the fourth largest population in the world. It is a rapidly changing, multi-ethnic country. Some areas have nuclear families, as in the UK; others have complex families, as in India or China. Many families are poor, and there are large wealth differences. These aspects make it an interesting country for comparative research from which wider lessons about care provision in later life can be drawn. Our approach is to first do ethnographic research in five different communities. This involves a researcher living among the study population, observing daily life and repeatedly interviewing older people who need care and their carers. We chose the communities because they are already being studied for another project, funded by Australia, to which we are linked. This means the researchers know the communities, and we can share data. Once we know what kind of care needs older people have, who provides care, what acceptable care looks like and what the burdens of care are, we will design questions for a household survey done in the same communities. This will allow us to analyse how common certain arrangements or problems are, and whether there are differences between men and women, rich and poor, and the different communities. By including questions used in national Indonesian surveys, we can also compare our findings to those surveys.Three ideas are central to our study and capture where our main theoretical contributions lie. First, we think that care is a cultural practice. By this we mean that culture shapes preferences for care providers, what counts as acceptable care, and what being dependent does to a person's social value. This is why we use ethnography, which uncovers local values and preferences, and why we compare ethnic groups within Indonesia. Second, we recognise that care is often provided by a mix of family members, neighbours, health care providers and volunteers, and care needs evolve. This is why we collect data on people's complete care networks over time. We also seek people's life histories to analyse how care in later life is related to an older person's past contributions. Third, we understand that older people differ in terms of gender, wealth, family networks etc. This is why we collect information on people's economic, demographic and social status and compare care among sub-groups.Our research is timely because the World Health Organisation (2016) has called on developing countries to implement sustainable long-term care systems. The Indonesian government wants to develop a long-term care system, and district governments want to meet local care needs. For this, they need to know who is currently providing care, what works well, how familial care can be supported, and where gaps in care provision occur. We aim to provide that knowledge.