Little research has taken place on the topic of carers in low and middle income countries and the challenges that they face.
To ensure that we both implement and campaign for appropriate support for carers, it is necessary to conduct research to form a comprehensive evidence base that provides an understanding on the number of carers, characteristics and needs of different groups of carers, and the effectiveness of measures implemented to assist carers.
In collaboration with our partners, academics, service providers and others working in the (I)NGO sector, we are currently taking a lead role in identifying relevant research topics and co-ordinating such research.
The data and results of our research form the basis for our policy and advocacy work which we engage in at regional, national and international levels. It is our belief that advocacy and campaigning work which is grounded in the experiences of carers themselves is critical to the achievement of inclusion of carers into the mainstream, ultimately bringing about sustained change.
As part of our policy work, we focus on creating a strong civic voice by bringing carers together in district-level associations and state-level forums with plans to establish national-level forums. Carers and other key stakeholders including NGOs working in various health fields, academics, private companies, and government officials are brought together in numerous conferences and events where informed discussions about the best way to address the needs of carers take place.
In September 2019 a Policy Review was conducted in to existing legislation, policies and schemes in India that could be utilized by carers in order to improve their economic and social wellbeing.
Texts which refer specifically to carers were included in the review; however, such references are scarce. The review also included legislation, policies and schemes that could be made applicable to carers, even if they do not refer to carers specifically.
As well as discussing which existing entitlements and benefits could be accessed by carers, the review made suggestions on how existing legislation, policies and schemes could be further developed to offer even greater protection for carers.
The review is currently being used as a starting point to encourage future discussions on policy engagement and advocacy processes that will transform the lives of carers and, in turn, those they care for.
In June 2019 we conducted a qualitative study in Baglung and Myagdi, two regions in Western Nepal to determine how helpful women-led self-help groups, Carers Associations and Carers Co-operatives, and additionally cooperative microfinance initiatives, can be in tackling the challenges faced by carers.
The study also investigated whether such activities are seen as empowering by those carers. Overall, the investigation provided evidence that self-help groups, Carers Associations and Carers Co-operatives are powerful tools that can be utilized to transform lives and empower carers, the majority of whom are women.
This research provides a strong evidence base as to the effectiveness of our work and can be used to encourage the implementation of our methods in to new areas and regions.
In 2019 we began forming our first State-Level Carers Forums (SLCFs) in India. Working with our existing partners we are creating SLCFs in four states of India – Karnataka (with SAMUHA), Andhra Pradesh (with SACRED), Jharkhand (with NBJK), and Odisha (with SPREAD, WORD, and EKTA).
The overall purpose of SLCFs will be to promote the recognition of the existence and role of family carers; to raise the voice of carers and promote their inclusion; and to develop a state level strategy framework for promoting and protecting the rights of carers.
The SLCFs are a move towards us establishing our first national alliance, an Indian National Alliance of Carers (INAC).