The socioemotional challenges and consequences for caregivers of Aboriginal and Torres Strait Islander children with otitis media: A qualitative study

Abstract Introduction Living with ear disease can have extensive impacts on physical, emotional and social well‐being. This study explored otitis media (OM) and its management from the perspective of caregivers of Aboriginal and Torres Strait Islander children. Methods Semi‐structured interviews were conducted from 2015 to 2020 with caregivers of Aboriginal and Torres Strait Islander children with OM. Thematic analysis of transcripts was undertaken using a constructivist grounded theory approach through the leadership and the cultural lens of an Aboriginal community‐based researcher. Results Caregivers described OM as having profound impacts on their child's physical, developmental, and emotional well‐being, with long waits for specialist treatment contributing to extra strain on families. Children's well‐being suffered when OM was mistaken for poor behaviour and children were punished, with caregivers subsequently experiencing strong feelings of guilt. Concerns were conveyed about the social implications of having a sick child. The variable nature of OM symptoms meant that caregivers had to monitor closely for sequelae and advocate for appropriate treatment. Success in navigating the diagnosis and treatment of OM can be strongly impacted by the relationship between caregivers and health professionals and the perceived access to respectful, collaborative and informative healthcare. Conclusion OM may have substantial social and emotional consequences for children and their caregivers. A holistic understanding of the way in which OM impacts multiple facets of health and well‐being, as well as recognition of challenges in accessing proper care and treatment, will aid families managing OM and its sequelae. Patient or Public Contribution Governing boards, managers, staff and community members from five Australian Aboriginal Medical Services were involved in the approval, management and conduct of this study and the wider clinical trials. The caregivers of Aboriginal and Torres Strait Islander patients at these services informed the interview study and guided its purpose.


| INTRODUCTION
Living with chronic middle ear disease, and managing its sequelae, is a common reality for many Aboriginal and Torres Strait Islander children and their families. [1][2][3] Middle ear disease (otitis media [OM]) encompasses all inflammation or infection of the middle ear including acute infection (AOM), OM with effusion (OME) and acute or chronic discharge of pus through a hole in the tympanic membrane (including chronic suppurative OM [CSOM]). 3 OM is regarded as a complex disease, most commonly experienced in childhood, with the potential to result in short-or long-term consequences for hearing, language development, school performance and behaviour. 1,4,5 The physical impacts of the disease, such as pain, are important to consider in improving outcomes for children with OM, but so too is the impact of OM on the social and emotional well-being of children, as well as their caregivers and their ability to manage their child's OM. 1,6,7 OM is often a silent disease, and symptoms can be subtle and detected only by caregivers understanding the disease and closely monitoring hearing-related behaviour. 1,5 Studies of the impact of OM typically focus on direct costs in high-income countries or communities, 8 despite OM rates and the potential social costs being disproportionately high in First Nations populations. 2,6,[9][10][11] Qualitative explorations of OM experiences for the Aboriginal and Torres Strait Islander populations in Australia have been very limited, so the impact of OM on these families is not well understood. 6 In this study, with the criminal justice system. 12,13 Systemic racism, lack of culturally appropriate care and decreased trust of healthcare institutions create ongoing barriers to accessing the necessary resources for achieving better health. 12 The health disparities include a high prevalence of OM and conductive hearing loss, which in turn drives the vicious cycle of socioeconomic disadvantage in education, employment and well-being for Aboriginal and Torres Strait Islander peoples. 3 There is a need for OM research that engages with Aboriginal and Torres Strait Islander children and families to identify and address the gaps and tailor healthcare and information. 14 Research context: Health research has reflected the same institutional and structural biases evidenced in the health system, relegating Aboriginal and Torres Strait Islander peoples to objects of study, with nonindigenous persons controlling the narrative of investigation and publication. 14 Research conceived and led by First Nations peoples is essential to decolonize the western processes of racialized knowledge production of Indigenous deficit. 15 In accordance with an Indigenist Standpoint, 16

| Participants
Participants included parents or carers who consented for their child to be screened for the WATCH and INFLATE trials and will hereafter be referred to as 'caregivers' to allow inclusiveness of the varied care arrangements of these families. Screening for the trials involved otoscopy and tympanometry testing of the child typically by a research officer. There were two groups of participants. One group included caregivers of children eligible to participate in the WATCH or INFLATE trials including caregivers who declined RCT participation but agreed to be interviewed. The second group included caregivers of children ineligible for the RCT because of complex ear disease. The first group of participants was recruited between 2015 and 2020 as part of the RCT's process evaluation, and the second group was recruited by L. C. in 2020 using purposive sampling to include caregivers with a broader range of OM experiences and diverse family situations. All participants provided informed consent before any data collection.

| Data collection
Semi-structured interviews were conducted over the phone or in person in a private room in the participants' AMS. Expert knowledge and a review of literature informed the development of the interview schedule (see Table 1). Four team members conducted the interviews with RCT-eligible caregivers, none having any other direct involvement with these families. L. C. conducted eight interviews with caregivers of children with complex ear disease who were ineligible for the RCT. L. C. had prior involvement with the families attending her AMS as a staff member and as a member of the local community.
Four researchers had qualitative interview experience including L. C.; one was a novice. Two interviewers were Aboriginal. The AMS research officers were present in some face-to-face interviews when preferred by participants. A yarning approach was adopted by interviewers with the experience to do so. 22,23 All caregivers completed only one interview, which they consented to be audio-recorded, and received a $25 gift voucher.

| Data analysis
Transcripts were thematically analysed using a constructivist grounded theory approach, which encourages reflection on how researcher perspectives, position and privilege influence the analysis. 24 Using NVivo 12 software (QSR), initial coding on all transcripts was undertaken by L. C., with independent co-coding of

| RESULTS
Interviews were undertaken with 28 people, of whom 21 identified as parents (19 mothers and two fathers) and seven were carers who identified as grandparents (one grandfather, four grandmothers), a What about hearing problems in the family?
Do you think they should be given antibiotics? What makes you think this way?
What do you think about ear disease in your community? Do you think ear disease is a normal part of childhood?
| 1377 maternal aunt and a non-related carer. Interviews ranged in duration from 12 to 53 min (26 min average). The generated themes reflect the socio-emotional challenges and impacts on children, caregivers and interactions with the healthcare system (see Figure 1).

| Caregiver impacts
Caregivers described the emotional and logistical impact that having a child with OM had on them and the lengths to which they went to try to ensure that their child's needs were addressed in a timely manner.

| Caregiver work on behalf of their child
Caregivers experienced uncertainty as to how they would know when their child had OM or hearing loss and how to judge severity.

| Significant gains with intervention
Despite long wait-times for some treatments like surgery, caregivers reported feeling more comfortable when they felt that their child was being monitored closely so they could focus on managing the child's symptoms and not managing the health system. Caregivers often reported immediate improvements after surgery for OME, like children responding to sounds when returning from hospital or speaking for the first time. While speech and language consequences often took years to rectify, caregivers expressed gratitude at receiving the intervention, particularly when services responded quickly.
But she's not as bad now, she focuses a lot more. Ever OM is an emotionally charged experience for the children suffering from the disease and also for their caregivers. Research focusing on the caregiver has frequently exposed the strain of the financial and logistical impacts of OM such as time for attending appointments, collecting and administering medication, absences from work and disrupted sleep. 7,11,27 However, qualitative studies have also highlighted that the presence and continued reoccurrence of OM provoke feelings of guilt, helplessness, despair and a sense that they or the healthcare system are failing the child. 8,10 Self-blame can be focused on the belief that the caregiver actively caused the OM through environmental and family factors, 10 or shame can centre on the delayed diagnosis and misinterpretation of the child's behaviour rather than OM aetiology. 8 25 The research also maintained the notion of Rigney's political integrity, 16 with the researchers ensuring that their roles as