Respiratory follow-up to improve outcomes for Aboriginal children: twelve key steps

Abstract

Background

Among Aboriginal children, the burden of acute respiratory tract infections (ALRIs) with consequent bronchiectasis post-hospitalisation is high. Clinical practice guidelines recommend medical follow-up one-month following discharge, which provides an opportunity to screen and manage persistent symptoms and may prevent bronchiectasis. Medical follow-up is not routinely undertaken in most centres. We aimed to identify barriers and facilitators and map steps required for medical follow-up of Aboriginal children hospitalised with ALRIs.

Methods

Our qualitative study used a knowledge translation and participatory action research approach, with semi-structured interviews and focus groups, followed by reflexive thematic grouping and process mapping.

Findings

Eighteen parents of Aboriginal children hospitalised with ALRI and 144 Australian paediatric hospital staff participated. Barriers for parents were lack of information about their child's condition and need for medical follow-up. Facilitators for parents included doctors providing disease specific health information and follow-up instructions. Staff barriers included being unaware of the need for follow-up, skills in culturally responsive care and electronic discharge system limitations. Facilitators included training for clinicians in arranging follow-up and culturally secure engagement, with culturally responsive tools and improved discharge processes. Twelve-steps were identified to ensure medical follow-up.

Interpretation

We identified barriers and enablers for arranging effective medical follow-up for Aboriginal children hospitalised with ALRIs, summarised into four-themes, and mapped the steps required. Arranging effective follow-up is a complex process involving parents, hospital staff, hospital systems and primary healthcare services. A comprehensive knowledge translation approach may improve the follow-up process.

Funding

State and national grants and fellowships.

Abbreviations

ALRI

Acute lower respiratory tract infections

WA

Western Australia

ATSI

Aboriginal and Torres Strait Islander

GP

General Practice doctor

AHP

Aboriginal Health Practitioner

SMS

Short Message Service

ALO

Aboriginal Liaison Officer

RESEARCH IN CONTEXT.

Evidence before this study

There are large differences in health outcomes and life expectancy between Aboriginal and non-Non-Aboriginal Australians, as recently highlighted by a Lancet editorial that expressed ‘a feeling of déjà vu’, finding the ‘2018 Closing the Gap report on health of Aboriginal people in Australia’ ‘utterly disappointing’. Contributors to this gap include respiratory diseases such as bronchiectasis; the life expectancy for Aboriginal people with bronchiectasis is 20 years less than for non-Aboriginal people. Aboriginal children experience disproportionately higher rates of both acute and chronic respiratory disease and higher rates of hospitalisation for respiratory disease. Aboriginal children who are admitted with acute respiratory infections are particularly vulnerable to developing chronic respiratory disease, namely, bronchiectasis. However effective follow-up and treatment of persistent symptoms may prevent bronchiectasis. While national guidelines recommend medical follow-up 3-4 weeks post discharge from hospital, there are currently no widespread strategies to follow up Aboriginal children in Australia.

We conducted a PubMed and OVID search for studies published between 12 March January 2001 and 12 March 2021 with search terms (Indigenous OR Aboriginal OR First Nations) AND (child OR children OR paediatric OR pediatric) AND (lower respiratory tract infection OR pneumonia OR bronchiolitis OR chest infection) AND (hospitalisation OR follow-up OR post-hospitalisation OR medical follow-up) AND (persistent symptoms OR bronchiectasis). We searched articles published in all languages.

Added value of this study

We demonstrated that arranging effective post-hospitalisation follow-up for Aboriginal children is a complex process involving parents, hospital staff, hospital systems and primary healthcare services. We identified key barriers and facilitators for parents and staff for effective follow-up, which included the need for culturally responsive care, provision of health information in a culturally secure way and health systems changes. Twelve key steps were identified as being necessary in the process from admission to discharge and then medical follow-up.

Implications of all the available evidence

Comprehensive knowledge translation initiatives, which addresses the identified barriers and facilitators, may improve the follow-up process by empowering families to seek medical follow-up and equip hospital staff with skills and environment to provide culturally responsive care to Aboriginal children. Careful implementation and evaluation of the strategies will provide insight into potential solutions to the current gap in respiratory health outcomes for this group of children and potentially narrow the elusive health gap between First nations and non-First Nations people in Western countries.

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1. INTRODUCTION

Aboriginal children have higher rates of hospitalisation for acute lower respiratory tract infections (ALRI) and experience more severe disease [1] than non-Aboriginal children in Australia regardless of where they live. [2] In Western Australia (WA), the burden is particularly high, with admission rates for ALRI's and pneumonia 7•5 and ~14 times higher respectively, in Aboriginal children compared to non-Aboriginal children. [3]

Aboriginal children are at high risk of developing chronic lung disease post-hospitalisation. Two studies found that 15-19% of First Nations children hospitalised with ALRI have bronchiectasis within 18-months of discharge from hospital. [[4],[5]] Specifically, those with a persistent wet cough at 3-4 weeks post-discharge post-bronchiolitis have significantly higher risk of a future diagnosis of bronchiectasis. [5]

Australian national guidelines for Aboriginal children recommend primary care follow-up at four-weeks post-hospitalisation to screen for and manage persistent wet cough, if present. [[6],[7]] The recommended management of children with a chronic wet cough (>4 weeks) in the absence of pointers to alternative causes, is to prescribe appropriate antibiotics i.e., treatment of protracted bacterial bronchitis, so as to ameliorate development of bronchiectasis. [6]

There are currently no state-level hospital policies for routine follow-up of Aboriginal children hospitalised with chest infections. Therefore, there is a need to develop and implement strategies for effective post-hospitalisation follow-up for this at-risk group. For long-term success, strategies implemented should be developed with a comprehensive and integrated approach, based on identified barriers and facilitators, which draw on local knowledge of both Aboriginal families and hospital staff. [8] Hence, our aims were to (i)identify the barriers and facilitators and (ii)map the steps required for following-up Aboriginal children hospitalised with ALRIs.

2. METHODS

We used a knowledge translation and Aboriginal driven [9] participatory action research design. [10] The participatory action research approach was selected to ensure Aboriginal perspectives informed and transformed existing biomedical paradigms. [10] The project represents the first phase of a larger knowledge translation study, which applied the Consolidated Framework for Implementation Research (CFIR) [11] to investigate the effectiveness of implementing strategies, based on the identified barriers and facilitators identified in this paper.

As part of the CFIR process, widespread external stakeholder consultations were undertaken prior to data collection. External consultations included the Aboriginal Medical Services (Kimberley and Pilbara regions, i.e., two northern most regions of WA where approximately 40% of the population are Aboriginal), Aboriginal Health Council WA, a non-government, not for profit organisation supporting state-wide Aboriginal controlled primary health services, a rural primary care health support organisation, and the WA Country Health Service which provides primary and secondary level care to regional WA.

2.1. Framework for interview questions and coding

The process for developing interview questions was based on our previous work, [12] where both parents and primary care clinicians highlighted the need for improved follow-up mechanisms for children hospitalized with ALRI and following external stakeholder input. Semi-structured questions were refined between two qualitative researchers. Following analysis of all interview data, identified themes were allocated to the questions. i.e., 1. Knowledge, 2. Skills, 3. Hospital environment and resources and 4. Beliefs and attitudes. (Table 1 and Table 2). The themes were selected by the researchers, based on the best-fit, to capture succinctly and efficiently the key issues surrounding patient care and follow-up.

Table 1.

Interview question guide to conduct parent interviewers

Question	Theme
1. Did the doctor or other staff talk to you about your child's condition and the need to follow-up in a month?	1. Knowledge
2. What did the doctor/nurses tell you when you were in the hospital?
3. Did the doctor or other staff explain to you about lung health?
4. What did you know about lung health in children?
5. Did the doctor explain medial information in a way you understood? What would help improve understanding?	2. Skills (of hospital staff)
6. What is it like coming to the hospital when your child is sick? (Do you feel safe or scared?)	3. Hospital environment and processes
7. Did you feel okay about talking with the doctors/nurses? How can we help improve things for families?
8. What can the hospital staff or system do to help you see a doctor in 1-month?
9. What things might make it hard to follow-up with your doctor or AMS when you leave the hospital?
10. Did you feel your Aboriginality or your child's Aboriginality affected anything while you were at the hospital?	4. Beliefs and attitudes
11. Did you feel comfortable to ask your doctor questions?
12. Did you feel listened to or understood by doctor/nurse?

Table 2.

Interview question guide to conduct with hospital staff

Question	Theme
1. What do you need to know/do to provide health information to families and arrange follow-up for Aboriginal children admitted with ALRI?	Knowledge
2. What would prevent you providing health information to Aboriginal parents and arranging follow up?
3. Do you feel confident in providing health information to Aboriginal families and arranging follow-up for Aboriginal children admitted with ALRI? What skills do you need?	Skills
4. What do you think are the barriers to providing health information and arranging follow-up for Aboriginal children hospitalised with ALRI? (i.e., lack of awareness, skills, knowledge, lack of training)
5. Are there factors within the hospital setting that could be a barrier or facilitator for Aboriginal families to take on board medical information and attend follow-up?	Hospital environment and processes
6. What processes or policies would assist or prevent with arranging follow-up?
7. Who is best placed to provide health information to families and arrange follow-up?	Beliefs and attitudes

2.2. Focus groups with staff

Staff were presented with an outline and rationale of the process required to facilitate follow-up for Aboriginal children with ALRIs, by a senior member of the research team who was also a consultant respiratory physician at the hospital and known to the participants. Staff were then given “a brief”, i.e.,

• •
  Aboriginal children hospitalized with ALRIs are at risk of developing chronic lung disease and there is currently no routine follow-up arranged. The solution: Hospital staff will facilitate primary care follow-up at 1-month. To facilitate follow-up at one-month:

  • ○
    Clinicians need to give parents/carers lung health information in a culturally secure way, including the need for follow-up.
  • ○
    Follow-up needs to be arranged through discharge instructions being sent to primary healthcare clinic/clinician

Barriers and facilitators were then identified and discussed regarding the required procedures. Staff were asked two key questions:

• 1.What are the barriers to you/your team arranging follow-up?
• 2.How can follow-up be facilitated by your team?

2.3. Interviewers for interviews and focus groups

The interview team consisted of five researchers in total: a female physiotherapist (PL) with expertise in Aboriginal qualitative research, a male Aboriginal Health practitioner (JW), a male respiratory physician (AS), a female qualitative researcher with expertise in Aboriginal research (RW) and a registered nurse and knowledge translation research expert (FG). Interviews and focus groups were conducted by at least two members of the research team with either audio recordings or written notes (as preferred by participants). Issues related to confidentiality, interview bias, role designation, power imbalance and assumptions influencing participants were discussed and resolved within the research team.

2.3.1. Interviews with parents

Semi-structured individual interviews were conducted with parents/carers of Aboriginal (henceforth respectfully termed parents) of children hospitalised with ALRI. JW was available for all parent interviews to ensure the cultural integrity for parent interviews. The interview process for parents first included an informal yarn, (Aboriginal term for informal conversation to first establish context, content, and trust about both the family and the researchers). The parents were then provided with lung health information, using a flip chart, with an explanation of the child's ALRI and the link to development of chronic lung disease following ALRI. [13] Table 1 outlines the framework for the semi-structured questions.

2.3.2. Staff interviews and focus groups

Knowledge of provision of culturally secure health information and the importance of clinicians arranging medical follow-up one-month post discharge were investigated. Staff were first provided with the rationale for arranging follow-up for Aboriginal children hospitalised with ALRI. Following this, semi-structured questions were asked. (Table 2). All staff approached for interview or focus group agreed to participate. One participant subsequently withdrew consent, due to concerns at their identifiability due to being Aboriginal.

The Consolidated Criteria for Reporting Qualitative Research reporting guidelines were followed. [14] Ethical approval was granted from the WA Aboriginal Health Ethics Committee (HREC 920) and the Child and Adolescent Child Health Service Ethics Committee (RGS 3220). All participants provided written, informed consent.

The study was conducted between October 2019 and December 2020 in the only paediatric hospital in WA. The hospital has 298 beds and provides paediatric care to children aged 0-16 years. WA is large, (2•6 million square kilometres) with most of the state classified as very remote. Four percent of the State's population are Aboriginal, a third of whom are aged <15 years. More than 60% of the Aboriginal population live outside metropolitan Perth in regional or remote settings. [15]

External stakeholders were consulted prior to hospital data collection to provide insight into regional service delivery, primary care follow-up mechanisms and logistics, and to better understand the needs and processes of state-level primary health care.

2.3.3. Selection criteria and recruitment

Parents of Aboriginal children hospitalised with ALRI were recruited during their child's hospitalisation. Parents were invited to participate in an interview during their child's hospitalisation. The invitation for the interview was suggested by the researcher. Pragmatically the interview occurred either at the time of recruitment or later during the child's hospitalisation, depending on the priorities of the parent/child and the hospital staff caring for the child. Hospital staff involved in caring for Aboriginal children with ALRIs were recruited via departmental meetings or by verbal or email invitation.

Purposive sampling was used with both criterion and snowball sampling [16] techniques to ensure a representative sample of parents was recruited. Similarly, the same technique was used for recruitment of clinicians and administrative staff, to represent all staff integral to influencing effective follow-up.

Sample size estimation is detailed in the supplement. Recruitment for both groups (parents and hospital staff) continued until information saturation was achieved for each group i.e., no new information or themes were evident. [17]

2.3.4. Data collection and analysis

Data from recorded interviews were transcribed verbatim. Hand-written notes were transcribed and crosschecked between at least two researchers (PL, JW, AS, RW or FG). Inconsistencies were discussed until consensus was reached or clarified with the interviewee when necessary. Reflexive thematic analysis, using deductive and inductive analysis [18] was undertaken to map themes by identifying codes and then sub-themes and agreed by the researchers using an iterative process. Key steps required to ensure medical follow-up were mapped, based on the identified barriers and facilitators, according to knowledge mapping processes. [19]

2.3.5. Analysis of data

Thematic analysis was undertaken in a step-wise process, which was consistent to the process outlined by Creswell et.al. [20] Figure 1 describes the systematic process and attributes researcher contributions.

Figure 1.

Steps of thematic analysis

Trustworthiness is outlined in the supplement

2.4. Knowledge mapping

Knowledge mapping [20] was undertaken using a process with four process steps based on Vail. [[19],[21]] The processes are outlined in Figure 2. The mapping process forms part of the CFIR framework to ensure all stakeholders are engaged and their needs are considered in the planning and organizing of the implementation process, complexities within the health system are accounted for to maximise both knowledge translation and its sustainability. [11] The knowledge map creation included identification of (i) all key people, i.e., child, parents, hospital clinicians, clerks, primary care doctors, (ii) key knowledge (iii) key resources (iv) process flow from beginning to end to ensure all essential elements were identified, and (v) identification and minimization of knowledge gaps. The mapping process was undertaken to promote knowledge translation within the health system for the implementation and evaluation phase of the larger project, using the CFIR framework.

Figure 2.

Knowledge mapping process

Role of the funding source: This project was supported by the Western Australian Health Translation Network and the Australian Governments Medical Research Future Fund (MRFF) as part of the Rapid Applied Research Translation Programme. The grant covered all direct research costs associated with the project including patient recruitment, data collection, production of health literacy tools and data analysis. PL's role in this project was funded by a grant from the Perth Children's Hospital Foundation. No payment or funding was made to write the manuscript by a pharmaceutical company or other agency.

3. RESULTS

External stakeholder findings are summarised in Table 3.

Table 3.

Summary of consultations with external stakeholders

Theme	Subtheme	Specifics
1. Knowledge	1•1 Primary care clinicians identified need to know how to manage children and recognise chronic wet cough	•Local clinicians need training in best practice guidelines. •Easy access to guidelines to existing updated guidelines. •Promote use of existing electronic training module. •Create and promote use of /listening to podcasts.
	1•2 Hospital staff need to ask parents about Aboriginal status	•Aboriginal status is not being asked and patients are not being identified.
	1•3 Hospital staff to ask parents for local clinic details	•Question of “Local doctor” being left blank, so summaries not being sent. Change way question is asked to “Where is your local clinic?” as local doctors change regularly and are not assigned to patients.
3. Skills	3•1 Liaison between hospitals and primary care is needed following discharge of children with ALRI	•Have a primary care liaison person in clinics to liaise with hospital about follow up for children.
	3•2 Expert input locally	•Ensure Specialist contact for local clinician provided to allow for any direction, clarification, or advice.
3. Environmental context and resources	2•1 Discharge summaries	•Discharge summary not arriving in a timely way. •Discharge summary needs clear instructions for local clinicians with clear summary of management and link to training and guidelines. •Improve system for timely discharge summary completions.
	2•3 Schedule appointment	•Make appointment for local follow-up while child still inpatient.

3.1. Demographics

Eighteen parents (16-female) aged 18-59 years, of children hospitalised with ALRI, were represented from the state's six major health regions, i.e., metropolitan Perth, South-west, Goldfields, Mid-west, Pilbara and Kimberley. Within the regions, families from both towns and remote Aboriginal communities were interviewed. Table-4 outlines demographics for parents. Figure 3 represents the flow of parents recruited for interview.

Figure 3.

Codes, subthemes and themes for parents to attend and hospital staff to arrange medical follow-up 1-month post discharge for ALRI in children

The 144-hospital staff interviewed (11-focus-group discussions [138-participants] and six-individual interviews) included doctors (paediatricians, respiratory physicians, Aboriginal services coordinator Aboriginal health practitioner, primary-care liaison), nurses, physiotherapists, and clerks. Clinicians and clerks from the hospital varied in experience (new trainees to specialist clinicians with >30 years expertise) and ethnic backgrounds (Aboriginal and non-Aboriginal). Interview duration 10-30 minutes.

3.2. Findings

Key barriers and facilitators for parents and staff are summarised in Table-5,6,7 and 8 respectively. We identified four themes [(i)Knowledge, (ii)Skills, (iii)Hospital processes and environment and (iv)Beliefs and attitudes)] derived from 11 and 13-subthemes and 40 and 38-codes for parents and staff respectively (Figure 4). We report parents and hospital staff themes together.

Figure 4.

Steps required to facilitate medical follow-up 1-month post hospitalization for ALRI.

4. PARENTS

4.1. Knowledge

A lack of health knowledge was a key barrier for parents to attend medical follow-up one-month post hospital discharge. Lack of clinician knowledge about culturally responsive engagement and care, with clinicians rushing, talking amongst themselves was also a barrier. Some parents reported previous doctors’ normalisation of cough symptoms (i.e., “wet cough is normal") also prevented their medical help seeking. However, parents reported culturally responsive engagement and provision of health information using simple language and teaching tools facilitated their attendance for medical follow-up.

4.2. Skills

A common barrier reported by parents was poor communication skills of clinicians with parents, i.e., clinicians not listening, dismissing parent concerns, using complex medical terminology, or failing to explain their child's health condition, resulting in parents feeling disempowered to ask questions. Parents stated clinicians who engaged with parents in a culturally responsive way, e.g., built trust, limited the number of doctors in the patient room, took time during consultations, invited questions, and listened to parents facilitated them to attend follow-up.

4.3. Hospital environment and processes

Several parents reported that discharge summaries did not reach their local clinics, and therefore local clinicians were not able to action follow-up. Parents suggested that the hospital could schedule appointments and send SMS reminder-texts to facilitate medical follow-up. Lastly, parents thought the hospital environment could be more inclusive of Aboriginal people if Aboriginal flags and art were clearly visible throughout.

4.4. Beliefs and attitudes

Some parents believed being Aboriginal negatively affected the way hospital staff engaged with them. Several parents felt discriminated against based on their race. The barriers facing parents are contextualised with hospitals being viewed as a “scary” place for Aboriginal people, due in part to the historical forcible removal of children and belief that hospitals were places where people died. Feelings of insecurity, fear or being overwhelmed, were reported as hindering parents’ communication and likelihood of asking questions. Parents expressed the need for Aboriginal staff to improve their cultural safety and for cultural training for non-Aboriginal staff. Lastly, some parents expressed that doctors’ authority was respected and information given to parents by doctors was highly regarded.

5. STAFF

All staff approached for interview or focus group agreed to participate. One participant subsequently withdrew consent, due to concerns at their identifiability due to being Aboriginal.

5.1. Knowledge

Clinicians generally did not know that current guidelines recommend that children should be followed-up one-month post-discharge, and they did not fully appreciate the importance of providing culturally secure health information to parents. [9] Many staff reported lack of knowledge about culturally responsive care. Clerks generally did not know that establishing Aboriginality was a national health requirement. [22] Key facilitators identified included provision of staff training in culturally responsive care and training in best-practice management for Aboriginal children hospitalised with ALRI, including knowledge of and access to Aboriginal interpreter services.

5.2. Skills

While all staff had completed mandatory on-line cultural training, many staff expressed low confidence in their skills to engage with Aboriginal families in an effective way, due to limitations in the scope of the mandatory training. However, some thought more training (including role-modelling ‘buddy’ system) would improve their knowledge, skills, and confidence.

5.3. Hospital processes and environment

Some staff acknowledged that the hospital environment may be intimidating for families, and the placement of Aboriginal art and flags throughout the hospital may provide a more welcoming environment. The lack of hospital policy for arranging medical follow-up was a barrier. Deficiencies in the electronic discharge system, which lacked an ethnic status drop-down option or pre-populated templates, were identified as barriers for efficient transmission of discharge instructions to local primary clinicians. Time pressures and high workloads were identified as barriers to staff completion of discharge summaries and provision of parent-health information. Facilitators identified included improving the electronic discharge system and the availability of easily accessible health literacy tools. There was widespread clinician agreement that follow-up would be best managed in primary care rather than through hospital outpatient clinics.

5.4. Beliefs and attitudes

While all clinicians agreed parents should be given culturally secure health information, there was widespread belief that it was other clinicians’ roles to deliver it, i.e., doctors suggested nurses provide education, nurses believed doctors or ALOs should and ALOs reported that they had no capacity to undertake disease specific education for all Aboriginal families. It was identified that the ideal was that doctors should provide education to parents, with support and reinforcement by nurses and physiotherapists.

While all staff expressed positive attitudes toward caring for Aboriginal children, some staff recognised the implications of institutional racism and individual prejudice or bias against Aboriginal people, and how this could negatively impact parents’ engagement within the health system. A belief that offence may be caused if clerks asked about Aboriginal status was the reason Aboriginality was not routinely ascertained.

5.5. Knowledge mapping

Figure 5 outlines the six-phases with 12 essential steps from the point at which a parent presents to the hospital with their child, to completing one-month medical follow-up.

6. DISCUSSION

Arranging medical follow-up for Aboriginal children hospitalised with ALRIs is a complex process involving parents, hospital staff, hospital systems, primary care (ideally local Aboriginal Medical Services) and clear and compatible communication systems between providers. Multiple steps (Figure 4) are required to facilitate effective follow-up, from initial contact with clerks to dispatch of discharge instructions to primary care clinics. Failure to implement any step could compromise follow-up. These complexities highlight the need to systematically address existing inadequacies using a theory-informed implementation framework [11] to facilitate measurable and sustainable improvements that translate to improved health outcomes. We identified barriers and facilitators to medical follow-up from parents and from hospital staff. The four themes were [i] Knowledge, [ii] Skills, [iii] Hospital processes and environment and [iv] Beliefs and attitudes.

Key barriers to effectively arrange follow-up included clinicians being unaware of the need for follow-up post-ALRI and not providing health information to parents. In addition, hospital staff did not routinely ascertain patients’ Aboriginal status. Time-pressures and a belief that other staff were responsible for discussing lung health with parents further compounded the problem. Limitations of existing health electronic systems prevented creation and sending out discharge instructions to primary health clinicians. Lack of disease specific health literacy was identified as a key barrier for parents understanding their child's medical condition and being aware of the importance of medical follow-up. These findings are consistent with previous research into health seeking by Aboriginal parents for their child's chronic wet cough, where parents reported lack knowledge about chronic wet cough delayed help seeking. [12] Importantly, when Aboriginal parents were provided with culturally secure health information, the number of parents seeking medical help for their child almost tripled. [9] Given that health literacy is a key determinant of health and wellbeing that strongly influences individual health care utilisation and outcomes, [23] provision of health literacy is critical to empower Aboriginal people.

Quality healthcare and health literacy are key facilitators of better health outcomes, requiring both health systems and providers to be culturally responsive to Aboriginal perspectives. [24] Indeed, the Australian policy context recognises that improving cultural safety can improve access and quality health care for First Nations. [24] Our findings highlight a gap in knowledge and skills of hospital staff in providing culturally responsive care. Parents reported how clinicians’ failure to engage in a culturally secure way left parents feeling disempowered and without knowledge of their child's health condition, its management and need for follow-up. Disempowerment was exacerbated by clinicians feeling rushed when engaging with parents, talking amongst themselves about the child in front of parents, using complex medical terminology and failing to listen to parents about their child's health. Perceptions of prejudice and racism by staff toward Aboriginal families during the hospital experience, compounded their feelings of disempowerment, disengagement and mistrust. [25] These findings are consistent with the Australian literature and government reports regarding negative impacts of culturally insecure practices within the health system on patient outcomes. [[26],[27]] Implicit and explicit racism within non-Aboriginal health systems, and has been widely reported in other studies, [12] highlighting the importance of improving cultural competency of the clinical workforce, [28] provision of culturally secure health care and health information. [29]

Failures to identify Aboriginal status and correctly document local primary-care clinicians confirms previous investigations into similar failings within the health system [27] and therefore underscores the need to identify Aboriginal status. Our study outlined that important demographic information may best be obtained once a patient has settled on the ward, when families are under less stress, when a child's medical status has settled. Many hospital staff cited time pressure as a barrier to providing culturally appropriate health information to parents, and follow-up instructions to the primary care provider. While time pressures have been cited as a barrier to providing health information in previous research [30], when considering how lack of follow-up places patients at risk, the provision of basic information to parents and primary care providers is essential to improve health outcomes. Indeed, previous research has confirmed improved health outcomes when clinicians provide culturally secure health information [9].

Facilitators for parents were culturally secure engagement by clinicians, which includes listening to parents, inviting questions, taking time to explain medical processes and timelines, and providing health information. Parents also expressed that increasing the Aboriginal workforce would improve cultural security as families can more easily relate to Aboriginal staff. These strategies to enhance cultural engagement are consistent with both the research to date [12] and National recommendations. [29]

Study limitations included being a single-site study and results might not be applicable to other sites. However, the hospital is the only referral hospital for children in the state, with relatively large systems and staff numbers. Hence, identifying barriers and tailoring solutions in this context will likely be generalisable to other sites. Some of the steps necessary to facilitate follow-up might have to be amended for local contexts, for instance, where follow-up would routinely be provided by the same service (and not by the local clinic). Another limitation was that staff working in primary care were not interviewed to understand local context. However, health professionals from the primary-care sector were consulted in the preparatory stages of the project and a primary care liaison doctor (with strong relationships with and experience in primary-care) was interviewed.

7. Conclusion

The process for ensuring medical follow-up of Aboriginal children post-hospitalisation for ALRI complex and includes at least 12 steps. Many of the facilitators, such as ascertaining Aboriginal status, providing Aboriginal parents with culturally appropriate health information should be embedded in routine medical care for all health conditions. Cultural competence training is an important strategy to improve the knowledge and skills for staff to confidently engage with Aboriginal parents will facilitate medical follow-up.

Declaration of Competing Interest

Prof. Chang reports fees to the institution from work relating to being a IDMC Member of an unlicensed vaccine (GSK) and an advisory member of study design for unlicensed molecule for chronic cough (Merck) outside the submitted work. The rest authors declare no conflict of interest.