The journey of aftercare for Australia’s First Nations families whose child had sustained a burn injury: a qualitative study

Abstract

Background

Access to ongoing multidisciplinary healthcare services for children who have sustained a burn injury is critical for optimal recovery. This paper reports on barriers and facilitators to culturally safe and appropriate burn aftercare for Australia’s First Nations children. The voices of First Nations families whose child had sustained a serious burn are central to this paper.

Methods

Eighteen families, which consisted of 59 family members, of children younger than 16 years who had sustained a burn injury were asked to describe their own journey in accessing appropriate burn aftercare. Interviews were conducted in the families’ homes using yarning (dialogue) and Dadirri (deep listening) as Indigenous research methods. Data was gathered in South Australia, the Northern Territory, Queensland and New South Wales, Australia. Using a cyclic process, transcripts and emerging themes were sent back to participants, and a collaborative approach was used to conduct the final analysis.

Results

Lack of culturally safe communication between service providers and family members, in addition to institutionalised racism, were found to be the major barriers to accessing healthcare services. Distance to medical treatment also impacted children’s access to aftercare. Involvement of First Nations Health Workers and/or Liaison Officers working with health providers, the child and family members, was found to be an important facilitator in reducing miscommunication and alleviating fear and anxiety in the children and families.

Conclusion

There are significant barriers to access to aftercare following a serious burn including miscommunication, lack of cultural safety, distance to medical treatment and racism. However, these can be largely mitigated when First Nations families have input into the care received and the care needed for ongoing burn care to be effective and are supported by First Nations Health/Liaison Officers support.

Background

Burn injuries can be devastating not only for the injured child but also for their family and their community. Australia’s First Nations children experience burns at a rate at least double that of non-Indigenous children [1]. To date, there has been limited published research on burns in Australia’s First Nations children, and what exists focuses largely on describing the burden using routinely collected data [2,3,4]. More recent work led by our team has highlighted the need for changes in policies and practices within the area of burns [5, 6]. The accessibility of high-quality aftercare for First Nations children, who constitute a high proportion of burns patients, predominantly those from regional and remote settings, is particularly important, given the complexity of long-term burns care, where access to appropriate treatment is essential to produce good long-term outcomes [7]. It is well-documented that burns can cause physical discomfort, lifelong scarring, and overwhelming psychological distress. Burn injuries also have an impact on the injured person’s family including dislocation from other family members and their communities [8]. Confusion about and a lack of understanding of healthcare procedures and protocols reinforce anxiety and mistrust of healthcare providers [9]. Ensuring that treatment and ongoing care is planned such that families are readily able to access appropriate care is an essential aspect of long-term burns care, but it is unclear how well this occurs in the treatment of burns in First Nations children. There are documented gaps in access to healthcare by First Nations people, both in primary and tertiary care settings [10], and there are studies highlighting delays which is suggestive of problems in the interface between primary care and the acute care sectors [11]. However, there are no studies on how First Nations children who have sustained a significant burn injury access burn aftercare once they have left the hospital burns unit. This study will focus on this gap by listening to the voices of children and their families through yarning (dialogue) and Dadirri (deep listening) about their experiences and the barriers or facilitators they experienced in accessing appropriate burn aftercare [12, 13].

Methods

Indigenous methods were applied to this research from inception through to data analysis through the standpoint of a First Nations researcher [14]. The use of Indigenous methods prioritises the voices of the families whose child had sustained a burn injury and needed to access burn aftercare [15]. Indigenous methods employed in this research include yarning and Dadirri, both recognised as techniques to gather stories of families’ lived experiences in partnership with the researcher [16, 17]. Yarning and Dadirri are forms of communication that are culturally safe and culturally appropriate ways of engaging in conversation [12, 13, 18]. The primary researcher is an Australian First Nations woman whose aim was to decolonise this research project by privileging the voices of the families [17].

Data collection

Australia’s First Nation families of 18 children younger than 16 years who had sustained a burn injury were asked to describe their lived experiences of their own journey from the time of injury to the time of recovery including accessing appropriate burn aftercare. Families were recruited purposively from a larger national study examining burn care in Australia’s First Nations Children (Ivers et al., 2015). Families were selected to ensure diversity of experience and access to burn aftercare. Data were gathered in South Australia, the Northern Territory, Queensland and New South Wales, Australia, from city, urban, remote and very remote areas. Families were diverse, from those having both parents to one parent homes where the carer was mother, father or a grandparent. Some families had a parent employed while others were unemployed. Two families from Northern Territory and one family from the Torres Strait Islands had English as their second language however no interpreter was needed for our yarns as their English was proficient and the families were comfortable communicating in English.

Families were invited to yarn about their child and family’s experiences between 2017 and 2018. All families had either one or both parents that identified as Aboriginal or Torres Strait Islander. Yarns were conducted in the family’s home and community using yarning and Dadirri as Indigenous research methods of storytelling. As yarning and Dadirri occurred within families’ home and community, there were no time constraints therefore sessions could last hours while sharing a meal, stories and connecting with one another. As experiences from the acute phase could impact on experiences of and access to burn aftercare it was important to understand the whole journey from the initial burn incident, the aftercare, through to the time of yarning together. Once the rapport and connection were established an audio recorder was brought out and, with the permission of the family, recording started.

Analysis

The family’s stories were audio-recorded and transcribed verbatim. The professional transcription service is based in Victoria, Australia. Using a cyclic process JC first reviewed the transcripts using a grounded theory approach and emerging themes were established. Families were then sent the emerging themes and their own manuscripts by mail for review. Phone calls were made to each family to yarn about the findings in their transcripts, this collaborative approach taken with each family contributed to the final analysis.

Ethics

Ethic approvals for the study were gained from seven Human Research Ethics Committees (HRECs) in Australia. The ethical procedure of this study referred to the relevant guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research [19, 20].

Results

In New South Wales we yarned with 5 families who were from urban areas, remote areas and very remote areas. In South Australia we yarned to 2 families that were from urban areas and 1 from a remote area. In Queensland, 2 families were from the city, 2 from an urban area, 2 were from a remote community, 1 family was from a very remote area and 1 family lived in the Torres Strait Islands. Two families from the Northern Territory, which included extended family members, had to relocate from a very remote community in an urban area due to ongoing aftercare for the burn injury. Three families had lost their employment due to their child’s burn injury and the time spent away from their homes and other family members. Eighteen children who sustained a burn injury and members of their families participate in the yarning and Dadirri this included mothers, fathers, Aunties, cousins, grandparents and siblings in total 59 family members participated in the yarning.

Communication

Families expressed the need for better communication from health workers. They described feeling confused when they left the burns unit after experiencing a lack of information about the burn care and what was expected once they had left the burns unit. Medical jargon and not being told what would happen next to their child was disconcerting for families, leaving them in fear and feeling angry. Communication lacking sensitivity and person-centred care was confronting to families trying to calm their child for their aftercare treatment (Table 1).

Table 1 Communication needs

Transport

Overall, transport was an issue that affected every family. Parking at hospitals was costly, sometimes resulting in fines due to appointment times being longer than expected. Distances from hospitals where aftercare was received caused stress on family budgets, schooling and work commitments. Appointments were made by the burns clinic and were not flexible in situations where families had other children to take into consideration (Table 2).

Table 2 Impact of travel

Child, parent/carer, family support

One of the biggest challenge’s families highlighted was the lack of local support or services for aftercare treatment. Services, nurses or allied health workers trained in the area of burns aftercare was especially important. Written, culturally appropriate information that was easily understood about the aftercare needed with contact numbers was a request each family shared. The need for contact numbers for local support agencies to assist with emotional support for family, child or single parents was also commonly voiced (Table 3).

Table 3 Family support

Family separation

Strong emotions were expressed when yarning about family disconnection. Families were separated for long periods of time and those with large families had to split up their other family members causing detachment. Being separated from their other children caused additional stress to the parent/carer. The child who had needed to travel large distances for aftercare became distressed at being separated from other siblings (Table 4).

Table 4 Family separation

Racism

The families told of their experiences of racism they had endured while engaging in Australia’s healthcare systems. Families told of feeling judged and disempowered and described the colonialism they experienced as a family while their child was being treated for the burn injury (Table 5).

Table 5 Racism

Healing in rural and remote communities

Staying in remote and rural communities with family and support systems was also identified as important for the ongoing health and wellbeing of the child and family. Families expressed the need for practical information on burn aftercare, as well as the aftercare being accessible to them in community clinics to lessen the stress and burden of travel and family dislocation (Table 6).

Table 6 Community support systems

Trauma

Trauma was evident when families in the study spoke about their child’s burn injury and the family’s journey through the healing processes. Although the child was treated for the burn injury in the burns unit, during the long process of aftercare there was no recognition or treatment for the psychological effects resulting from the injury for the child, or the one who caused the injury, or the family. A family experienced trauma through the removal of a sibling of the injured child to welfare other families were traumatised by fear of their child being removed (Table 7).

Table 7 Trauma

First nations health workers/ liaison officers

Most families expressed a lack of understanding about their child’s aftercare as well as a lack of understanding of the medical jargon used. Involvement of First Nations Health Workers and/or Liaison Officers working with health providers, the child and family members were voiced as important to improving communication, accessing ongoing healthcare and supporting the family (Table 8).

Table 8 Importance of First Nations health workers

When families were asked to prioritise the importance of the themes emerging from this study, the families identified transport and dislocation from family and community, racism and lack of culturally safe communication as critical elements affecting burn aftercare. A significant positive facilitator to burn aftercare, mentioned by each family, was the importance of First Nations health worker who they described as having a role in maintaining the wellbeing of child, family and culture.

Discussion

This is the first study that privileges the voices of Australia’s First Nations families on access to burn aftercare for children. Highlighted in this section are some of the significant systemic barriers to burn aftercare, which include but are not limited to, the lack of culturally appropriate communication, racism and distance from burn aftercare and family separation.

Issues around medical jargon and transport are also experienced by non-Indigenous Australians, however these themes that were identified by families are intensified from First Nations families. Whilst the issues regarding understanding of medical jargon affect non-Indigenous people from different racial backgrounds and those with limited literacy (particularly health literacy) this aspect of communication for Aboriginal and Torres Strait Islander peoples occurs on a background of ongoing colonisation and oppression as well as of intergenerational and individual trauma. Similarly, transport issues affect all rural and remote dwelling peoples, however, the context of colonisation means that the nature of these effects are experienced differently. Entrenched marginalisation in society has created contexts of poverty unique to First Nations peoples. Racism precludes First Nations peoples from fair access to public transport and private vehicle ownership. It is important to appreciate that some themes from this study may have broader applicability but there is a need to recognise and act upon the unique circumstances of First Nations families in order to improve experiences of ongoing care [21, 22]. The families that shared their experiences highlighted barriers which led to multiple and unnecessarily lengthy hospital visits for treatment and aftercare of their child’s burn injury.

Racism

In line with the work of Durey, Thompson and Wood, who discussed the need to address institutional racism and misunderstandings in communication, our results similarly show that the issues are the same for burn aftercare and particularly emphasise the need for cultural change to address the systemic racism experienced by First Nations children and their families [23].

Racism is a word that continually comes to the forefront not only in Australia but globally and needs to be addressed if equity and equality are to be attained in healthcare systems. Western biomedical frameworks which reinforce colonial power structures, has been the platform on which health policies have been developed, and continues to marginalise Australia’s First Nations concept of health and wellbeing in our healthcare systems [24]. Institutionalised racism does not encourage ethical, respectful or culturally safe healthcare for Australia’s First Nations people; Durey and Thompson propose that “In order to ensure culturally safe health service environments, both institutional and personal commitment is required” [24].

Families spoke of a breakdown in communication within and from the multidisciplinary team which led to a lack of coordinated care between the tertiary and primary healthcare systems. Because there is no coordinated care between the systems, families missed appointments which further reinforced the stereotypical assumptions that First Nations families don’t attend follow-up appointments, when in fact they did not attend due to the breakdown in communication, false assumptions and racism.

Interpersonal and systemic racism by healthcare providers was experienced by the study families, discouraging them from attending future appointments. In addition, some children feared having to return for further treatment because of the culturally unsafe treatment they had previously received from the healthcare providers. The families reported that previous treatment by healthcare workers left their child and family members traumatised.

Transport and family separation

A further barrier to children and families attending burn aftercare is the significant distance between burn aftercare facilities and family homes and the lack of transport services forcing dislocation and separation of families. This was demonstrated by Fraser et al. in a study which found that transport and distance from home and community were not taken into consideration in healthcare practices [5]. For instance, when one parent was caring for the child with the burn injury at the burns clinic, the other parent was elsewhere caring for the remaining children. Dislocation led to the family’s other children being at risk of removal by child services, this was highlighted by multiple families who participated in the yarning.

Families also spoke of a lack of planned processes for further management with the multidisciplinary team to ensure the best outcomes following their child’s discharge from the burns unit.

Some service providers encouraged relocation to the city from remote communities leading to displacement of the families. Families were told that their child would not receive the level of care needed, and that they should move from their community and home to live in the city.

Families shared how they felt these racist and colonialist statements did not take into consideration the importance of their connection to Country. To First Nations people, Country means connection, it is a spiritual belonging, and community and family are paramount to their psychosocial and cultural wellbeing. Families spoke about community being a place where many mothers and aunties help raise a child, and that comments like “you should move” amplify the issues of distance and led to experiences of hopelessness for First Nations families whose child required ongoing aftercare [25].

First nations workers

Communication was expressed by the families as one of the leading barriers to accessing burn aftercare in Australia. An example in this study was use of medical jargon ‘... I didn’t understand what they were talking about, them words were too big medical words..’ to answer families’ questions which effectively left their questions unanswered.

However, the presence of First Nations Health Workers as mediators and interpreters of the medical jargon enabled the child and family to understand in lay terms what had happened and what would happen in the future regarding their child’s burn aftercare [26].

Parents acknowledged that without First Nations health worker involvement, there was no connection to culture for their child or family in the burn clinics. Furthermore, families stated that engagement of a First Nations Health Worker enabled trust between the service providers and child and/or family. Studies from Australia have shown that the involvement of First Nations Health Workers was crucial in creating culturally safe and appropriate healthcare systems for aftercare and cultivated trusting relationships between multidisciplinary team, the child and families [27].

The primary strength of this qualitative study is that it uses Indigenous methodologies and prioritises the voices of First Nations families whose child had sustained a significant burn injury and needed access to burn aftercare.

Another significant strength of this paper is in the design where following transcription, the transcripts were sent to families for confirmation of accuracy and feedback, reflecting an alignment of the families’ views and ensuring their voices represented the researcher’s interpretation of the journey of First Nations families whose child had experienced a burn injury.

A limitation of this study is that we were only able to recruit First Nations families whose child had experienced a serious burn injury from five hospitals in Australia where paediatric burn services were offered. First Nations children who were treated in outpatient centres not included here may have had different experiences that were not captured in this study.

Conclusion

There is a lack of cultural competency and safety in healthcare for Australia’s First Nations people, creating barriers in access to health services, including burn aftercare. The lack of culturally competent communication causes fear, distrust and anxiety to the child and to family members. Aftercare cannot be separated from the initial care received, as it influences not only short-term but also long-term recovery for the child and the family.

A planned process enacted in a culturally appropriate and safe way would take into consideration the needs of all involved in the burn aftercare, including the multidisciplinary team, the First Nations Health Workers, the family and the child. Ensuring a clear pathway for the child’s aftercare needs, which is understood by the family, can lead to an easy transition to the multidisciplinary team from the burns unit to optimal healing for the child.

First Nations Health Workers had a positive influence on the impact for ongoing health and wellbeing as well as supporting the aftercare processes for healing. However, the role of First Nations Health Workers in supporting families and having an integral role in burn aftercare has not been recognised in Australia’s health systems to date [26, 28];. First Nations children who have experienced a serious burn and need a multidisciplinary team for ongoing aftercare to achieve a healthy, happy and productive life would benefit from the continued support and involvement of First Nations Health Workers.

The United Nations Declaration on the Rights of Indigenous Peoples clearly states that First Nations people globally have the right to best practice healthcare no matter where their choice of residence is [29]. Australia’s First Nations children also have the right to appropriate and beneficial aftercare for their burn injury to have the best outcomes for healing regardless of proximity to healthcare services.

“Somewhere closer to [for bandages or physio] instead of travelling all that way. So you’re really far away from your family... I’d love it if they had it in [Country places] or something like that. Not saying that my kids are going to get burned again, but it’s just for all families.” (Mother from remote community)

Collaborative and supported burn aftercare education and training for parents from experienced health workers to assist with home aftercare and added access to a burns unit for any queries parents may have will alleviate the need for constant long-distance travel, and therefore families can remain together and reduce dislocation.

The continued culturally unsafe practices experienced by the children and their families further reinforces racism in Australia. Health services in Australia need to incorporate culturally responsive healthcare as part of their routine burn aftercare. Training is necessary to foster good communication, stop racism and stereotyping, which in turn will encourage families to engage in aftercare appointments [30]. Training health workers in culturally responsive care ensures they are responsive to First Nations children and families’ needs in a vulnerable space.