Background: Respiratory Illnesses (RI) in Australia’s Aboriginal and Torres Strait Islander population are predominant causes of morbidity and mortality. To date, however, although more than half of Australia’s Aboriginal and Torres Strait Islander peoples reside in urban regions₁, there have been no studies focusing on young Indigenous children with RI in an urban setting.
Focusing on respiratory health in Aboriginal and Torres Strait Islander children is important as RI in Indigenous children are common and serious. Nationally, diseases of the respiratory system, although ranked fourth as the cause of death in Indigenous infants, are the most common cause of preventable deaths (Australian Institute of Health and Welfare (AIHW) 2008). They are also the most common reason for presentation to general practitioners and the second leading cause of all self-reported ill-health in this population (AIHW 2011). Chronic respiratory disease is the second most common reason for hospitalisation among Indigenous Australians, after renal dialysis (Australian Health Ministers’ Advisory Council, 2008). The incidence of non-Cystic Fibrosis bronchiectasis is excessive in remote area children (Chang, Grimwood, Mulholland & Torzillo 2002) and it is associated with repeated infections in early childhood (Valery, Torzillo, Mulholland, Boyce & Purdie 2004). Aboriginal and/or Torres Strait Islander children bear a disproportionate burden of acute and chronic lower respiratory infections (O’Grady, Taylor-Thomson, Chang, Torzillo, Morris, Mackenzie, Wheaton, Bauert, De Campo, De Campo & Rubin 2010) with disease in childhood being increasingly recognised as antecedents for chronic lung disease later in life (Galobardes, McCarron, Jeffries & Smith 2008). The highest incidence of RI occurs in children aged less than 5 years, particularly in young children aged less than 2 years (AIHW 2011).
Despite the burden of disease, there are no studies that have examined risk for, and impact of, RI in Indigenous children from an Indigenous perspective. This lack of data limits the ability to plan, implement and evaluate strategies and interventions to reduce incidence and improve respiratory health outcomes.
Aim: This study aimed to inform the development of future research and interventions by gaining an understanding of Indigenous contexts and perceptions of risk for RI in Indigenous children. Specifically, we aimed to examine the cultural context and risk factors of Aboriginal and/or Torres Strait Islander children with acute and chronic RI in an urban setting.
Primary objective: The primary objective of this study was to explore risk for RI as perceived by the parents of young Aboriginal and/or Torres Strait Islander children from within an Indigenous context.
Secondary objective: The secondary objective of this study was to explore the impact of RI in urban Aboriginal and Torres Strait Islander children on families and communities from within an Indigenous context.
Specific Research Questions
1. What are the meanings and consequences of RI, and the associated risk factors, in urban Indigenous children within the social and cultural context of Indigenous families and their communities?
2. What is the impact of RI amongst urban Indigenous children and their families, including individual, family and community impacts
Methods: My research consisted of a study that provided a picture of the risks and impacts of RI in urban Indigenous children, their families and communities. A specific definition of respiratory illness (ie acute or chronic, asthma, pneumonia etc) was not used to avoid limiting the potential scope of information gained. It employed a qualitative approach utilising Indigenous research methodology. Focus groups were conducted with members of Brisbane’s Aboriginal and Torres Strait Islander community in order to access the lived experiences of Indigenous people who have cared for children with RI. The study explored the concept of risk for RI from an Indigenous perspective and how RI impacted upon families. Focus group discussions were digitally recorded (with prior permission of participants) and transcribed verbatim by myself. Once transcriptions were complete, I analysed the data using a thematic analysis method.
Results: We conducted a total of four focus groups, each of 6-8 members, between November 2012 and April 2013. There were 24 participants; 15 participants identified as Aboriginal, seven as Torres Strait Islander, one as both and one (a carer of Indigenous children) as neither. There were 21 females and three males. All participants stated that they (a) identified with an Indigenous community and (b) actively maintained connections with their Indigenous culture at home. The majority of participants also stated that they preferred to access Indigenous-specific or Indigenous-friendly primary health care.
In summary, participants’ perceptions of risk & impact were influenced by:
Traditional Indigenous values, culture and practices, including traditional medicine
Connections to family, friends and community
Beliefs handed down from elders, parents and other family members about illness and wellness
Experiences within mainstream and Indigenous-specific health services
Access to knowledge and information about RI
Access to reliable support networks
Social, emotional and spiritual wellbeing
All of these factors impacted how participants perceived health and wellbeing that in turn influenced how they and their family experienced health care and how they were impacted by RI.
Discussion: My study has identified that the perceptions of Indigenous parents/carers about RI (and health and wellbeing in general) are different to those of mainstream health care professionals; that these perceptions and beliefs have a profound effect not only on their experiences of health care but may also provide an explanation for the high prevalence of RI in Indigenous children. These outcomes illustrate that medical professionals, researchers and health care providers need to acknowledge and address the concerns of Indigenous parents/carers in order to begin to address not only the prevalence of RI in Indigenous children but also the larger health disparity between Indigenous and non-Indigenous children in Australia.
Outcomes: Anticipated outcomes from this research include:
• Recommendations to build upon the information from this study and improve health outcomes for Indigenous people
• Data to inform the development of an Indigenous-specific risk assessment tool for RI that can be utilised by both clinicians and researchers