Higher-degree research being undertaken by Pam Joseph




Dr Rosalie Pockett and Associate Professor Fran Waugh

Thesis title:

Parent-carers' perspectives on their relationships with diverse service systems



Project description

Care of a child (including adult children) with high-level care needs frequently involves interaction with multiple providers across diverse service systems. This study explores parent-carers’ perspectives on their relationships with these services. By listening to, and privileging, the voices of these parents, the study aims to contribute to an improved nexus between formal and informal care. Viewed through a critical lens, the emerging themes may challenge existing ways of thinking about these relationships and the conceptualisation of ‘care’ and ‘caring’.

The study uses a social constructivist approach, within a framework of critical post-modern feminism. Concepts found in complex systems theories, such as the importance of a nuanced and dynamic understanding of relationships, are also influential in the research design. In addition, I draw on the concept of disablement, as offered by the social model of disability, in my approach to this project.

Parents participate in semi-structured interviews and use a low-tech mapping tool to create a visual record of the service systems with which they interact. A thematic analysis explores areas of commonality and diversity across the parents’ verbal and visual data.

Questions of anonymity and confidentiality are pertinent when conducting research with participants whose individual circumstances may be sufficiently unusual as to be identifying. In addition to the standard written consent prior to data production, a post-interview consent form was used, enabling parents to specify any constraints on the usage of their information and ensuring maximum informed consent on the use of information emerging in the course of the study.

With an increasing focus on person-centred practices, and the implementation of the National Disability Insurance Scheme, it is timely to develop new understandings of what it means to be a parent-carer in the context of complex formal service system involvement. The study will have implications for policy and practice in fields of health, disability, community services and education.

Pam Joseph has qualifications in nursing, midwifery, maternal and child health, and social work. It was in a role as Family Advocate with the Australian Leukodystrophy Support Group that she became aware of the complexity of service systems confronting parents who cared or a child with complex care needs as a result of a rare white matter disorder. On moving to Sydney from Melbourne in 2012, she took the opportunity to combine her past professional experience with her ongoing passion for learning, to enable a deeper exploration of this issue through her PhD research.


  • Katharine Ogilvie Memorial Award 2015
  • Australian Postgraduate Award 2016

Professional and community roles:

  • President, Committee of Management, Leukodystrophy Australia (Australian Leukodsytrophy Support Group Inc.)
  • Chairperson, Social Workers in Disability (A practice group of the Australian Association of Social Workers) 2014/2015
  • Research Advisory Panel member, Master of Genetic Counselling program, University of Melbourne/Murdoch Children’s Research Institute

Conference presentation