I anticipate that this page will be refined as my research progresses, so please don’t read it as a final document. Any questions and feedback from interested readers would be gratefully received (as long as it is constructive, naturally).

In my work with families affected by a leukodystrophy, I’ve been struck by the vast array of different services and service systems that carers* interact with on a day-to-day basis. These services may sit within sectors as diverse as health, finance, education, employment, and disability, and can be in acute or community-based settings…not to mention the implications of transition points such as paediatric/adult services.

Historically, most Australian services for people with a disability have been funded by governments (State or Federal) and charitable organisations, and access to these services is often limited or influenced by a range of factors outside the control of the service recipient. In Australia currently, as in many other Western countries, the political context in disability services is moving toward direct funding models, in other words provision of funds to a person with a disability or their carer so that they can make their own decisions about which services to use, and to pay for these directly. This may be seen as a way of increasing choice and control – undoubtedly a commendable aim.

But what does interaction with such a complex ‘system’ of services really mean for families, and in particular for carers? My exploration so far indicates that there is very little in the way of strong research to present their perspectives. Much of the ‘evidence’ is anecdotal and potentially skewed in favour of those who are articulate and politically savvy, or presented from the perspective of other stakeholders.

Against this background, the short title of my research topic is: “Parent-carers’ perspectives on their relationships with complex service systems”. The research project will examine the perspectives of parents who are caring for offspring (child or adult) diagnosed with a genetic condition resulting in high-level care needs. Such conditions present a particular complexity of service involvement, due to the increasing level of care required over time, questions of definition as a condition of health and/or disability, and the potential for multiple family members to be affected, often with varying support needs and service utilisation.

This will be an exploratory enquiry, taking a social constructivist world view. In other words, I will be focusing on the meanings given to these experiences by the parent-carers themselves. While I acknowledge that as a social researcher I bring my own interpretations and biases to the project, I will be endeavouring to be aware of these and to set them aside as much as I can, so that I can truly ‘hear’ the perspectives of the parent-carers. The posts in the blog will no doubt be a platform for untangling some of the questions and dilemmas that emerge from these ontological and epistemological positions.

* My use of the term ‘carer’ reflects the Australian context of my research. It is equivalent to the term ‘care-giver’, which may be more familiar to readers from other countries.

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