Families with an Aboriginal and Torres Strait Islander child with disability : system, service and provider perspectives

University of Technology Sydney. Faculty of Health.Background: Aboriginal and Torres Strait Islander children experience a higher prevalence of disability and socio-economic disadvantage than other Australian children. Early intervention involving the health, education, and social service sectors is vital for improving outcomes, but complex and fragmented services limit access and can compound disadvantage. Aim and objectives: This project aimed to inform ways to improve access to non-Aboriginal community controlled health, education, and social service providers and services for families of Aboriginal and Torres Strait Islander children who have a disability in Western Sydney, New South Wales, as part of a larger community-initiated Australian Research Council Linkage project (LP120200484). The objectives were to: 1) investigate the important components of collaboration in the field of Aboriginal and Torres Strait Islander childhood disability; 2) better understand non-Aboriginal Community Controlled Health Organisation provider perceptions, understandings, and experiences of providing services; 3) explore the barriers and facilitators to service provision; and 4) identify optimal approaches to developing interdisciplinary collaboration to support the multidimensional needs of families in their quest to ensure their children’s health and well-being. Setting: As part of Australian Research Council Linkage project (LP120200484), University of Technology Sydney researchers partnered with an Aboriginal Community Controlled Health Organisation to better understand how to facilitate improved service access for Aboriginal families with a child with a disability in Western Sydney, New South Wales, Australia. Design: Phase one involved an integrative review of the literature using a systematic approach to elucidate how collaboration works in practice across and within sectors involved in service provision. This addressed a gap in the literature and informed development of the topic guide for Phase three. Phase two involved an asset-informed approach to mapping services relevant to Aboriginal childhood disability. The approach advocates the use of assets that already exist within communities to develop solutions for community-identified issues. This produced a directory of relevant services for families, and identified relevant providers and stakeholders for Phase three recruitment as well as advancing the methodological rigor of asset-informed mapping. Phase three involved in-depth semi-structured interviews with 24 non-Aboriginal community controlled health, education, and social service providers informed by the epistemology of pragmatism. Data analysis was informed by the general inductive approach. The Candidacy, and Collaborative Practice to Enhance Patient Care Outcomes, frameworks were employed as analytical frameworks to explore provider perceptions, understandings, and experiences. The concept of candidacy describes the joint negotiation between families and providers of the eligibility of Aboriginal children with a disability and their families for services. The Collaborative Practice to Enhance Patient Care Outcomes framework explores the processes and determinants of interprofessional collaboration in this context. Results: The perceptions, understandings, and experiences of providers in delivering care to Aboriginal children with a disability in Western Sydney fell into two main categories: 1) direct service provision to children and their families, and 2) drivers of those collaborating with other providers in this field. Providers’ perceptions, understandings, and experiences of providing direct services to families centred on their perceptions of factors that either impeded or enabled families’ access to their services. Candidacy is influenced by interactions throughout the following stages: Identification of candidacy, Navigation of services, Permeability of services, Presentation at services, Provider adjudications, and Offers and resistance to services. The process of candidacy is managed within operating conditions at the macro level related to the impact of the socio-political context of colonisation and the Stolen Generation, and funding and current policy directives. Providers’ perceptions, understandings, and experiences of working together across the health, education, and social service sectors centred on their perception of factors which either impeded or enabled collaboration. Interprofessional collaborative practice was influenced by interdependent interactional and organisational factors. Interactional factors fit within one of two dimensions: the ability of providers to share common goals and vision within a complex cross-sector service landscape, and sense of belonging in regard to factors that influenced trusting relationships and willingness to work together, particularly with Aboriginal providers and services. Organisational factors also fit within one of two dimensions: the influence of governance in relation to its important role in coordination and unlocking the strength of schools as service settings, and the essential role of the formalisation of processes to effective interprofessional communication. The processes of interprofessional collaborative practice were managed within the context of systemic factors of policy and funding at the macro level. Conclusion: Early intervention is vital to improving outcomes for Aboriginal and Torres Strait Islander children with a disability. Facilitating improved service access for families is key to ensuring that children receive early intervention. This will require holistic and collaborative responses from the health, education, and social service sectors involved in service provision. This thesis has advanced the field conceptually and methodologically by developing a framework for undertaking an asset-informed approach to service mapping. It has also contributed to the theoretical application of the Candidacy, and Collaborative Practice to Enhance Patient Care Outcomes, frameworks beyond their original focus on healthcare services to consider the interplay of factors related to the involvement of providers from the health, education, and, social service sectors