Role of the medical community in detecting and managing child abuse

To the Editor: I thank Oates,1 and Gwee and colleagues2 for writing on the role of the medical community in detecting and managing child abuse. I would like to add to the points they make. Doctors have a crucial role in medical follow-up for children in out-of-home care. Many children in out-of-home placements have complex needs, with physical and mental health disorders.3 Placement breakdowns mean that some children lack consistency in medical follow-up, which can lead to complete treatment drop-out. This is a significant risk factor for children in care.4

Keeping the child health passport up to date can help with handover of medical conditions for children changing placements. General practitioners can assist with handover by keeping a log of prescriptions issued, with photocopies of private scripts.5 A doctor should highlight in the medical record when a patient is a child in care, making note of the name of the person who attends with the child, which organisation he or she works for, and details of the responsible government department and case worker. Such details can be useful to track a new abode for the child, particularly in the context of a missed appointment. Details of the guardian are also valuable when seeking consent for treatment.

Medication safety can be promoted through: carers leaving prescriptions at a designated pharmacy; weekly or fortnightly dispensing; use of Webster-paks; and the safe storage of medications by carers. The medical community can, with documentation and attention to prescribing, assist with the medical management of children in care.

Trends in hospital admissions for conditions associated with child maltreatment, Northern Territory, 1999-2010

Child maltreatment statistics are routinely reported by child protection services in all Australian jurisdictions.1 There are well documented variations in both the rates and trends of these statistics among states and territories. In the 6 years from 2004–05 to 2009–10, notifications of possible maltreatment increased fourfold in Western Australia but halved in Queensland. For the same period, the number of substantiated cases halved in the Australian Capital Territory but increased threefold in the Northern Territory.1 Explanations for the variation both within and between jurisdictions include: varying mandatory reporting requirements; changes in the threshold for documenting reports; changes in definitions; and changes in policy and service capacity.2 Rates also vary between countries. The rate for Australian children subject to substantiated maltreatment was 6.1 per 1000 in 2009–10,1 compared with 14.2 per 1000 in Canada in 20083 and 3.6 per 1000 children in England in 2009–10.4 Improved understanding of variations in child maltreatment rates is important in informing the rational development of services and has led to efforts to expand the sources of information used for child maltreatment surveillance. One possible source is hospital inpatient data.

Details of hospital admissions are coded by trained administrative staff using the International Classification of Diseases, which includes version 9, clinical modification (ICD-9-CM) and version 10, Australian modification (ICD-10-AM).5,6 The classification system includes codes for specific diagnoses and for cause of injury, including whether an injury was intentional. There are also codes for child maltreatment. A recent review of 47 international studies assessed the utility of hospital codes for reporting injury-related child maltreatment.7 The authors were guarded in their recommendation for the general use of hospital admissions data for reporting child maltreatment, concluding that the primary benefit was to identify “selected diagnoses” and patterns of child abuse.

The use of hospital data for more general surveillance has been uncommon. A 2004 analysis linked child protection data with diagnostic data from emergency departments and hospital admissions.8 The analysis identified 12% more cases of maltreatment than child protection data alone. Nonetheless, the authors concluded that the method was of only marginal benefit, and could not be justified as an ongoing model because of the limited subset of additional cases, methodological complexity and expense. More recently, it has been proposed that population surveillance may be feasible if based on a wider range of codes “suggestive” of child maltreatment.9 Researchers identified 68 ICD-9-CM codes which, when restricted by age bounds, were estimated to have a greater than 66% likelihood of being the result of child maltreatment. In WA, hospital maltreatment and assault codes have been validated by linkage with child protection data.10 The authors of this study subsequently reported long-term trends in child maltreatment and assault.11 WA hospital data were also used in a comparison of trends in maltreatment in six countries.12 A further variation in approach involved systematically identifying ICD-10-AM hospital inpatient codes “indicative” of child maltreatment.13 This approach included separate codes for four types of maltreatment — physical abuse, sexual abuse, emotional abuse and neglect. The application of these codes included a filter for specified perpetrator categories that may be recorded within admission codes.

We recently reported trends in notifications and substantiated cases of child maltreatment for the NT using child protection data for 1999 to 2010.14 Through this period of legislative change, service expansion and continued media attention, the rate of substantiated cases of maltreatment increased by 18% per year among Aboriginal children, while there was no evidence of increase among non-Aboriginal children. Despite the increase in substantiated cases, we were unable to identify whether there had been a change in the underlying rates of maltreatment in the population. The aim of this study was to investigate trends in child maltreatment among NT Aboriginal and non-Aboriginal children using a different data source — hospital admissions.

Methods

Data sources

We used the NT hospital separations dataset (HSD), which contains data (with coded diagnoses and procedures) for inpatient episodes for all five NT public hospitals. Data from the one private hospital in the NT were not available. The research dataset contained de-identified demographic information and up to 10 admission codes for all children aged 0–17 years admitted between 1993 and 2010. Demographic information included a unique identification number for each child. Rates were calculated using population data (by year, sex, 5-year age-group and Indigenous status), provided by the Health Gains Planning Branch of the NT Department of Health, based on Australian Bureau of Statistics estimates.15

Identification and classification of abuse-related episodes

Hospital admissions were coded using the ICD-9-CM until June 1998 and then ICD-10-AM from July 1998 onwards. Analysis was undertaken using both the definitive codes for maltreatment (ICD-10-AM codes T74.0, Y06 and Y07 and ICD-9-CM codes 9955, E9684 and E967) and indicative codes proposed by McKenzie and Scott (Appendix).13 Mapping of ICD-9-CM to ICD-10-AM codes was possible for definitive maltreatment codes;16 however, there was an anomalous surge in ICD-9-CM coded episodes after 1996 which was consistent with a systematic change in coding practice. There was greater difficulty mapping the indicative codes, with one-to-many mapping of the indicative codes between ICD versions. As a result of these inconsistencies, the final analysis was restricted to the 12-year period from 1 January 1999 to 31 December 2010. Interstate residents, patients with no diagnostic information and “statistical discharges” were excluded. A statistical discharge indicates a change in the type of care during a single admission in the same hospital.

A number of changes were necessary to the approach of McKenzie and Scott.13 Supplemental codes for perpetrators were introduced for external cause codes (ICD-10-AM codes X85-Y09) in 2002, after commencement of the study period, and were therefore not used in the general analysis. McKenzie and Scott also included two procedure codes which were not included in this analysis. There were no recorded episodes of physical abuse counselling (9608400) in the NT HSD, while the small number of full-body radiography procedures (5830600) not already identified using an admission code for child maltreatment were commonly associated with conditions such as the assessment of cancer or genetic conditions.

Repeat admissions of a child for the same incident, including interhospital transfers, were identified using separation mode, date of separation and admission codes. These admissions were then analysed as a single event based on details provided for the first admission.

Analysis

The incidence rates for all maltreatment-related hospitalisation episodes were calculated by Indigenous status for the age-group 0–17 years combined; a subanalysis for physical abuse-related hospitalisations included sex and age-specific (0–12 and 13–17 years) rates. Poisson regression was used to estimate the incidence rate ratio for the annual increase in rates by calendar year.

Ethics

The study protocol was approved by the Human Research Ethics Committee of the NT Department of Health and the Menzies School of Health Research (HREC 11-1501) and the Human Research Ethics Committee of the University of Adelaide (H-028-2011).

Results

The study dataset contained information on 150 962 public hospital admissions, from 1999 to 2010. Analysis was undertaken on 140 646 records after excluding 6857 interstate residents, 90 patients with no diagnostic information and 3369 statistical discharges.

Definitive maltreatment diagnoses

There were 323 admissions with at least one definitive code for maltreatment. After removing 10 repeat admissions there were 275 admissions of Aboriginal children and 38 admissions of non-Aboriginal children (Box 1). The average annual hospitalisation rate for Aboriginal children with a definitive code was almost ten times the rate for non-Aboriginal children (8.8 v 0.91 admissions per 10 000 per year, respectively). The rate for each group tended to decrease over time, but neither decrease was statistically significant.

Indicative maltreatment diagnoses

During the same period, there were 1201 admissions with one or more codes indicative of maltreatment. After removing 99 repeat admissions, there remained 885 admissions of Aboriginal children and 217 admissions of non-Aboriginal children (Box 1). The average annual hospitalisation rate was greater for Aboriginal children than non-Aboriginal children (28.4 v 5.2 admissions per 10 000 per year, respectively). Between 1999 and 2010, the estimated hospitalisation rate increased by 3% for Aboriginal and 4% for non-Aboriginal children, but the 95% confidence intervals were also consistent with no change or a small decrease (non-Aboriginal children) over time.

There was an overlap between types of maltreatment, with some children being diagnosed on the same admission with more than one type of maltreatment. Physical abuse was reported for about 85% of admissions for maltreatment among both Aboriginal and non-Aboriginal children (Box 1). The hospitalisation rate for Aboriginal children was almost five times the rate for non-Aboriginal children; rates increased for both groups between 1999 and 2010 (by 4% and 6% per year, respectively). The increase for Aboriginal children was statistically significant. For the group of non-specific indicative codes (“other”), including emotional abuse, the hospitalisation rate decreased by 14% per year for Aboriginal children and 17% per year for non-Aboriginal children. The decrease for Aboriginal children was statistically significant (but may reflect a shift in coding practice toward more specific codes).

The hospitalisation rate for conditions indicative of physical abuse was much higher for older children than younger children among both Aboriginal and non-Aboriginal children (Box 2). For non-Aboriginal children, the hospitalisation rate was 2–3 times as high for boys compared with girls in both age groups. Among Aboriginal children, the rates were similar for boys and girls aged 0–12 years, but higher for girls than boys among those aged 13–17 years, and increased for both older groups. The rate among older Aboriginal girls was 13.5 times the rate among older non-Aboriginal girls (Box 2).

Perpetrators

The available data with perpetrator codes, for 2003–2010, showed that among younger children, both Aboriginal and non-Aboriginal, most perpetrators were family members (Box 3). For most older children, a perpetrator was not specified. One notable difference among older children was that a spouse or partner was recorded as the perpetrator for 18% of Aboriginal children but only 1% of non-Aboriginal children.

Discussion

Our study shows the utility of hospital admissions data for population surveillance of child maltreatment. A direct comparison can be made between the results in this study and the results of our previous trend analysis, for the same period and same population, using child protection data.14 Among NT non-Aboriginal children there was a significant increase in notifications of possible maltreatment between 1999 and 2010, but both child protection substantiations and hospital admissions data suggest that the underlying level of child maltreatment has remained stable. Among Aboriginal children, the comparison of child protection and hospital data is more complex. Between 1999 and 2010, notifications to child protection authorities increased for all types of maltreatment, with an overall annual increase of 21%. This was matched by an annual increase of 18% in rates of substantiated cases. Numbers of cases also increased by type of maltreatment, except for physical abuse.14 The current study shows no increase in definitive codes and a 3% annual increase using the indicative codes, of uncertain significance. The difference in trends between data sources supports the argument that the increases in substantiated cases were a result of factors including improved identification, changes in policy and increased capacity in child protection services. The judgement by a clinician that a hospital admission was maltreatment-related involves a level of subjectivity, but the results suggest that clinical reporting practice did not change substantially over time.

Among older Aboriginal children, there was an increase in admission rates for physical abuse. Of particular concern was the violence against older Aboriginal girls, who had the highest rate of hospital admission for physical abuse among all groups, which was 13.5 times the rate for older non-Aboriginal girls. Perpetrator coding was available for more recent years; and while for most admissions the perpetrator was not specified, those that were specified suggest that the violence against older children extended beyond the historical definition of maltreatment (involving only parents and caregivers) to violence within the broader community, including from peers and partners. The results are consistent with previous reports on interpersonal violence that have highlighted the increased risk among Aboriginal children and women.17–20

The study results also support a more general application. In WA, a maltreatment admissions rate of 2.7 per 10 000 children was reported for 1999, falling to 1.3 per 10 000 children in 2005.11 The WA rate in 2005 is consistent with the rate of 0.91 per 10 000 for non-Aboriginal NT children reported in this study. The WA rate of assault-related hospitalisation was 6.1 per 10 000 children in 2005,11 while for NT non-Aboriginal children in our study the average annual rate for physical abuse was 4.5 per 10 000 children. There are variations in the methods, populations and the time periods between studies; however, the similarity of results indicates that hospital admissions may provide a more consistent basis for comparison between Australian states and territories than the current reliance on child protection reports.

Whether based on child protection sources or hospital admissions, child maltreatment rates are only indicators of the prevalence of child maltreatment in a community. Hospital admissions data have the further limitation of only containing a subset of more severe episodes of maltreatment. In particular, emotional abuse is a rare hospital diagnosis, but is commonly reported in child protection data. A second limitation is that reporting is entirely dependent on clinical records. Definitive codes have the requirement that they can only be applied if there is a clear statement within the clinical record that the episode is a consequence of maltreatment. Clinicians may be suspicious, but not certain, so an episode can pass without a definitive record. Despite recommendations for developing classifications, there is currently no diagnosis code for “possible” maltreatment.9,21 As a result of not being able to use perpetrator codes for the general analysis in this study, there will be an overestimate of maltreatment-related admissions. However, the study shows a converse difficulty that, even when available, the perpetrator code was not specified in a substantial proportion of admissions.

This study demonstrates that hospital admissions data can provide an additional source for surveillance of child maltreatment in a population. The use of hospital data is particularly useful among younger children where there is a clearer association with family-related incidents. In this study, the stable rate of maltreatment-related admissions in younger Aboriginal children was in contrast to the increase in substantiated cases reported by child protection services.14 For older children the codes indicative of maltreatment overlap with incidents within the wider community. The extent of violence and overlap of family and community incidents lends support to the calls for a broad population strategy, with focus on prevention, to protect vulnerable children.21,22

1 Trends in hospital admission rates for child maltreatment, using both definitive and indicative codes (by type of maltreatment), 1999–2010

No. of admissions

Average annual rate per 10 000 (95% CI)

Annual change in rate, IRR (95% CI)

Aboriginal children

Definitive codes (1999–2010)

275

8.8 (7.4–10.2)

0.96 (0.91–1.01)

Indicative codes (1999–2010)

Neglect

170

5.5 (4.7–6.3)

1.03 (0.96–1.11)

Physical abuse

747

24.0 (21.5–26.5)

1.04 (1.01–1.08)

Sexual abuse

3.1 (2.3–3.9)

1.05 (0.96–1.16)

Other*

132

4.2 (2.6–5.9)

0.86 (0.79–0.93)

All admissions

885

28.4 (25.8–31.1)

1.03 (1.00–1.07)

Non–Aboriginal children

Definitive codes (1999–2010)

0.91 (0.59–1.22)

0.92 (0.77–1.10)

Indicative codes (1999–2010)

Neglect

0.26 (0.05–0.48)

1.01 (0.73–1.39)

Physical abuse

188

4.5 (3.5–5.4)

1.06 (0.98–1.14)

Sexual abuse

0.6 (0.4–0.9)

0.98 (0.81–1.21)

Other*

0.6 (0.3–0.9)

0.83 (0.66–1.06)

All admissions

217

5.2 (4.4–6.0)

1.04 (0.96–1.11)

IRR = incidence rate ratio. * Emotional abuse has been included within “other”.

2 Trends in hospital admission rates for children with a diagnosis indicative of physical abuse, 1999–2010

No. of admissions

Average annual rate per 10 000 (95% CI)

Rate ratio (Aboriginal v non-Aboriginal)

Annual change in rate, IRR (95% CI)

Aboriginal children

Boys

0–12 years

104

8.8 (6.7–10.8)

4.1

1.01 (0.96–1.07)

13–17 years

237

58.2 (49.4–67.1)

3.1

1.04 (1.01–1.06)

Girls

0–12 years

7.2 (5.9–8.5)

8.9

0.99 (0.94–1.06)

13–17 years

325

82.8 (69.2–96.3)

13.5

1.07 (1.05–1.09)

Non-Aboriginal children

Boys

0–12 years

2.1 (1.1–3.1)

1.11 (0.99–1.25)

13–17 years

110

19.0 (14.8–23.2)

1.05 (1.01–1.09)

Girls

0–12 years

0.8 (0.4–1.3)

1.06 (0.88–1.28)

13–17 years

6.1 (4.5–7.8)

1.01 (0.94–1.08)

IRR = incidence rate ratio.

3 Perpetrator categories for all maltreatment, 2003–2010

	Recorded perpetrator by category
	Spouse/partner	Family member	Other	Unspecified	Total

Aboriginal children
0–12 years	6 (2.2%)	192 (70.3%)	18 (6.6%)	57 (20.9%)	273
13–17 years	77 (17.9%)	80 (18.6%)	56 (13.1%)	216 (50.3%)	429
All children	83 (11.8%)	272 (38.7%)	74 (10.5%)	273 (38.9%)	702
Non-Aboriginal children
0–12 years	0 (0)	24 (55.8%)	5 (11.6%)	14 (32.6%)	43
13–17 years	1 (1.0%)	12 (11.7%)	25 (24.3%)	65 (63.1%)	103
All children	1 (0.7%)	36 (24.7%)	30 (20.5%)	79 (54.1%)	146

Patients’ and carers’ perceptions of safety in rural general practice

Engaging with patients to gain an in-depth understanding of their preferences, beliefs, values and contexts facilitates delivery of safe, high-quality care.1 Patient-centred care2 and being responsive to patient needs and desires is an international concept that is well recognised in the patient safety and health care quality literature.1

The importance of obtaining patients’ views about the health care they receive has been endorsed through the promotion of the Royal Australian College of General Practitioners standards.3 For accreditation to the standards, practices must regularly use an approved patient feedback tool, and must have a process for receiving and managing patient complaints.3 While such feedback enables comparisons at a health system level, it does not elucidate how patients think about safety and their involvement in health care. Qualitative methods can be used to uncover the complex, multifaceted issues concerning patients’ views of safety and quality in health care.4

In Australia, there has been ample research on patient preferences regarding quality of care in general practice5–10 and what constitutes the major incidences and causes of harm in this setting.11 Additionally, there has been some work on understanding what Australian patients know about problems and failures in health care,12 and adverse event and incident disclosure.13 A recent review found that only a small number of qualitative studies have been conducted with rural populations concerning quality of care, but none has focused on patient perceptions of safety in general practice.14 It is important to understand rural patients’ perspectives of safety, as they may have specific needs or different perspectives from urban populations.

With this in mind, we aimed to explore patients’ and carers’ experiences of rural general practice and to identify their perceptions of safety in this health care setting. We chose to conduct focus group interviews to gain a rich understanding of people’s attitudes, beliefs and views about their lived health care experiences.15

Methods

We targeted rural and regional patients and carers from south-west Victoria who were frequent users of general practice, such as those with a chronic condition, on repeat medication, older people and mothers with children. These patients were believed to have more experience with general practice, and therefore to have greater insight into specific safety issues.

Participants were recruited through local community health or allied health organisations between August and November 2012. Recruitment sources comprised education and support group meetings for type 2 diabetes self-management, cardiac rehabilitation, group exercise and a mothers’ group. Individuals were provided with study material, and if they were interested, they self-selected into the study.

The Flinders University Social and Behavioural Research Ethics Committee granted ethics approval (project no. 5667). Participants provided informed written consent and received a $50 shopping voucher for their time and travel expenses.

Focus group protocol

We conducted a series of focus group interviews between September and December 2012. They were recorded and transcribed verbatim. We administered a questionnaire to obtain basic demographic information before the start of each focus group.

A semi-structured focus group interview protocol was developed to gain a broad understanding of patients’ and carers’ experiences of care (Box 1). This exploratory study required a flexible approach and the use of general concepts that could be further refined and revised during data collection. Questions were adapted and follow-up questions were asked to probe particular safety points of interest from previous focus groups, and to confirm or contest these issues.

Focus group data were analysed using a thematic and iterative approach to identify the safety issues evident in participants’ narratives. Narrative analysis was used to explore and interpret the lived experience of individuals.16

Transcripts were reviewed by two authors (A L H and C W) and analysed using the constant comparative method to inductively generate a coding structure that outlined themes and subthemes. After the researchers reached consensus on the coding structure, the codes were applied to the entire set of interviews. NVivo 10 (QSR International) was used to support the analysis.

Results

During recruitment, 114 individuals were approached, with 32 providing consent. Twenty-six participants took part in one of four focus group interviews in the Victorian towns of Balmoral, Hamilton, Merino and Portland. Each group had three to 10 participants. Reasons for not participating in the focus groups included being too ill to attend, not able to attend at the specified time and date, loss of interest, and failing to attend. Box 2 shows participants’ demographic characteristics.

Participants who had experienced some level of harm were able to comment more extensively on safety aspects of care; however, themes related to safety were identified from the analysis of all participant narratives. Box 3 provides illustrative quotes associated with the key themes.

Risk awareness

Although not explicitly recruited with these criteria in mind, there were two types of participants — those who had experienced harm and those who had not. Harm was experienced in hospital care and general practice care, with the former being more common in the participants’ stories. The severity and seriousness of the circumstances that led to hospitalisation and the errors that occurred during the hospital journey created a heightened sense of awareness for safety in the hospital. Compared with hospital care, perception of risk in the general practice setting was perceived differently by some participants. Continuity of care and trust in the doctor–patient relationship allayed perception of risk.

Trust

Participants spoke of the characteristics of GPs that contributed to a sense of trust, which included confidence in their clinical competence and having personal knowledge of the patient.

When participants had experienced harm in general practice, their trust was compromised to varying degrees. Some patients took action to rebuild this trust, while others ended their relationship with that GP and sought care elsewhere.

Participants who had not experienced harm relied heavily on their trust in provider. Some were forthcoming about their lack of knowledge or understanding of safety, and their limited ability to accurately identify when risks could occur. Experience and expertise of the GP were additional factors which promoted trust.

Vulnerability

Participants described feelings of vulnerability in their experiences of care. Many suffered from multiple chronic conditions and therefore considered themselves more at risk of harm, whether these were clinical or psychological harms. Reported clinical harms included misdiagnosis, delays in treatment, not adhering to standard care procedures, and medication errors. Psychological harms that some participants experienced included verbal abuse, name calling and other disrespectful or dehumanising behaviours or practices such as lack of eye contact, and dismissive, rude or aggressive interactions.

Even participants who had not experienced harm emphasised their need to be treated with respect as an individual by the GP, demonstrating a collective sense of vulnerability faced by the general population of patients.

The power dynamics between the patient and the doctor also contributed to patient vulnerability. When participants attempted to voice their real or perceived fears about their health conditions to their GP, power imbalances between patient and provider led to feelings of embarrassment and foolishness.

A forgiving view of mistakes

Some participants considered mistakes or errors in their care as “normal”. They expressed an understanding and sympathy towards the GP’s situation and considered mistakes as part of being human. Many viewed the GP as an ordinary person in their community, not “god-like” or omnipotent.

The familiarity and continuity of the doctor–patient relationship in general practice may have enhanced this forgiving view of mistakes, when compared with one-off and short encounters with health professionals in hospital settings. The sense of closeness experienced in a rural community may also account for the differential tolerance of hospital versus GP mistakes.

Desire for an explanation and apology

Participants lacked appreciation of the systemic nature of medical error, and as a result they placed responsibility for errors solely on the GP. In contrast with accountability for errors, participants described system barriers that prevented GPs or other health care professionals from apologising and acknowledging patient harm, including a medical culture fearful of litigation.

Nevertheless, they reported a need for an explanation of what went wrong and why, and they described apology as the most effective way for patients to recover and move on from an incident. Some participants described feelings of admiration for those clinicians who apologised to patients when errors occurred despite the perceived threats of litigation.

Appreciation of general practitioner interpersonal skills over competence

Some participants did not focus on the safety of their care, but rather the GP’s interpersonal skills. In these instances, participants appeared to value the interaction and relationship with their GP without seeming to question the GP’s clinical competence. A desire for a caring GP and other relational attributes were considered to be more important, and care was assumed to be safe.

Discussion

Our study aimed to identify patients’ perceptions of safety in general practice and explore the factors contributing to the development of these perceptions. Many of the participants had an assumed sense of safety in the rural general practice setting. Only those who had experienced harms were able to comment extensively on safety, and much of this concerned experience with or awareness of hospital safety issues. Those who had not experienced harm did not conceptualise it, and furthermore, when these participants were in a trusting relationship with their GP, they assumed that the care provided was safe.

These findings directly contest previous research, which found that patients who have experienced harms in hospital settings could accurately identify and report on safety incidents,17,18and make recommendations on improvements to safety.12 Even the general public have an awareness and understanding of safety in health care due to increased amount of research, media attention, and political interest in recent years.19 However, much of this research has occurred in hospital settings and may not be applicable to the general practice setting, where issues of trust, vulnerability and preferences for interpersonal skills are prominent over safety.

Individual contribution at the beginning and throughout the focus group discussions was emphasised through the use of a skilled facilitator to minimise agreement bias. Interpretation bias was acknowledged and avoided through independent data review and analysis. Although there were only 26 participants, the issues raised reflected a diversity of views and experiences.

An assumed sense of safety is a concern, given that general practice is the first point of contact for most people seeking medical care, and its high volume of repeat interactions and frequency of adverse events.20In our study, risk perception in general practice was mediated by a variety of different factors. Trust was the most prominent factor, and it may mask the patient’s ability to identify possible threats to safety and hence reduce risk awareness. Trust in the patient–provider relationship has been researched,21 and has been used as a model to improve patient involvement in safety, with mixed results.22,23 The nature of general practice makes it amenable to the creation of trusting relationships between patients and doctors. However, patients reverting to a default position of trust when they believe they do not have sufficient knowledge or skills, or are not in a position to adequately comment on safety,24 is problematic because patient awareness of and involvement in safety has been shown to improve clinical effectiveness, health outcomes and satisfaction with care.25

This study also revealed unique safety-related themes. Feelings of vulnerability have been reported by patients with chronic diseases.26 Interaction and communication between the patient and the GP is important to reduce feelings of vulnerability and ensure that patients feel comfortable and confident with their GP. Effective communication during the consultation is the key to facilitating safe and high-quality care; however, there is no “one size fits all” approach, as patients’ preferences and desires for a style of interaction vary widely. Being flexible and adaptable to patients’ different communication needs has been recommended as a solution to the limitations of general communication guidelines.27 Further, communication with patients extends to the disclosure of errors when they occur. Patients in our study and in others28 expect an honest and timely apology where appropriate and explanation of what went wrong. While there is a code of conduct in Australia referring to open disclosure of medical errors, there are still gaps in compliance and patient satisfaction with this process.13

We found that only patients who had experienced harm were able to comment on safety issues, and safety was largely seen as a problem in secondary care. New insights into the factors that influence the development of safety perspectives have demonstrated the value of incorporating the patient voice into safety research. These findings contest current research on patient involvement in safety, and warrants further exploration.

1 Focus group interview questions and prompts

The primary questions posed in the focus groups were:

1. Can you describe what is involved in a normal visit to your general practitioner?

Prompts: Ringing to make an appointment, arriving at the
clinic, waiting time

2. Can you describe your relationship with your GP?

Follow-up question: What makes a good relationship?

Prompts: Communication, trust, information provision

3. What other staff do you come across at the GP clinic?

Prompts:Reception staff, practice nurse, practice manager

4. Is there anything about the clinic that influences you wanting to go there?

Prompts:Car parking, disability access, cleanliness

5. What is most important to you about the care you receive at your GP clinic?

Prompts:Patient-centred care, patient involvement in care

6. If you could improve something about the care you receive, what would it be?

Prompts:What do you do when things go wrong?

Prompts:Awareness of safety issues, risk perception

2 Demographic characteristics of the 26 focus group participants

Characteristic

Women, no. (%)

14 (54%)

Pension card holder, no. (%)

18 (69%)

Health care card holder, no. (%)

15 (58%)

Married, no. (%)

16 (62%)

Secondary education (years 7–10), no. (%)

10 (38%)

Retired, no. (%)

15 (58%)

Repeat prescription, no. (%)

18 (69%)

Common health conditions, no. (%)

High blood pressure

11 (42%)

High cholesterol

10 (38%)

Arthritis

10 (38%)

Mean age in years (SE); range

59 (3.8);
range, 27–83

Mean number of health conditions (SE); range

3 (0.6);
range, 0–14

Mean number of visits to general practitioner in previous year (SE)

12 (2.3)

SE = standard error.

3 Participant quotes associated with safety themes

Risk awareness

If I know I’m being looked after I feel safe. Like if I know, all right, they may not have all the answers but people are onto it … people are working together with me and then I feel safe. Whether it’s like my current doctor who doesn’t know anything much about my condition anyway, but he’s working together with my cardiologist and they’re working it out together and so I feel quite, far safer than I have in a very long time so. But not so with the hospital. That’s a different thing. (37-year-old woman with a congenital chronic condition)

[Hospital acquired infections] are the things you see in the major hospitals that cause havoc. Where … what you end up with is worse than what you went in with. (83-year-old man with multiple chronic conditions)

Trust

The thing is … when you don’t have confidence in a doctor either a) because of something they’ve done or b) because you don’t know them, it makes life even that more difficult. (69-year-old man with multiple chronic conditions and a carer)

Conversation between two participants:

P1: You don’t know I don’t reckon … I’m just like “whatever” you know like I didn’t want to be there so they kept coming and saying “oh we’ll try this”, and I’m like “yep whatever go for it”, you know … (27-year-old mother)

P2: You trust, yeah. (28-year-old mother)

P1: … you just “OK”, you’re just in there, you know, emotional to say the least … you have no idea what’s about to happen … Well they’re doctors and they’re nurses and they’ve probably done it 100 times before, they all know. You just go with it, like that’s me and I’m one of those personalities to just say “yep, yep OK”. I just trust that they know what they’re doing.

Vulnerability

… [we] told her that his bowel habits had got worse, they changed, he wasn’t feeling that well and everything. And he said I wouldn’t mind a colonoscopy and she’s saying “you don’t need it, I’ll give you something else for your haemorrhoids”. After she finished we were getting ready to leave and he said “I’d really like a colonoscopy” and I can still see her sitting there, she was kinda half turned her back to us with the computer and she looked over like that [over shoulder] and she said “I cannot send you for a colonoscopy like that for haemorrhoids” … he felt really stupid for asking then … We did feel rather foolish the way she spoke with us … (64-year-old woman carer)

Conversation between two participants:

P1: You’re vulnerable. You’re vulnerable to them … (37-year-old woman with a congenital chronic condition)

P2: Yeah, yeah. (73-year-old man with multiple chronic conditions)

P1: And you’d prefer if they don’t abuse that …

P2: We’re pretty frail creatures, aren’t we, when it comes to sickness?

A forgiving view of mistakes

I felt that, ah, more should have been done when I went to doctor for a respiratory problem … Not a sign of sounding me or doing anything like that, but he was busy and as I was told he was having a bad day, and the phone had gone out and a few things like that. Well OK, he’s only human. (83-year-old man with multiple chronic conditions)

Desire for explanation and apology

I’d prefer someone to say to me “look I’ve made a booboo”, “yes you’re right”, “OK, we’ll make sure that doesn’t happen again”. All over red rover. (73-year-old man with multiple chronic conditions)

Conversation between two participants:

P1: Like, I feel like you need an explanation and why everything went chaotic. I think they should explain this is what happened. They can’t tell you at the time because it’s all happening. (28-year-old mother)

P2: No, nobody was telling me anything. (35-year-old mother)

P1: But afterwards I think you definitely need a, your doctor should debrief you and say this is what is happening; this is why we did this and that.

Appreciation of general practitioner interpersonal skills over competence

… so I went to there and, um, this fella was a lovely fellow but he had no idea about five of the illnesses that I had suffered from. He had no idea about what medications I ought to take. He still doesn’t figured out what the blood tests I get for the leukaemia, and um, so you know, that’s where, but he is a lovely fellow, and I love going to him because we have a good chat … (70-year-old man with multiple chronic conditions)

P1 = participant 1. P2 = participant 2.

Engaging Aboriginal and Torres Strait Islander men in primary care settings

To the Editor: It is well recognised that Aboriginal and Torres Strait Islander men are one of the most disadvantaged population groups in Australia in terms of physical wellbeing.1 Annual Medicare Benefits Schedule health assessment items are essential tools to help Aboriginal and Torres Strait Islander men (and women and children) receive primary health care matched to their needs, as well as opportunities for preventive health care and education.

A growing body of evidence suggests that erectile dysfunction (ED) coexists with, or is a clinical marker for, other common life-threatening conditions, such as coronary heart disease and type 2 diabetes, due to shared underlying neurovascular mechanisms.2 Indeed, the relative risk and severity of coronary artery disease appears to be higher for young men reporting ED.3 Despite this, discussion with Aboriginal and Torres Strait Islander men about sexual health is often lacking. In such population groups at risk of chronic disease, the opportunity to assess erectile function may present a window of opportunity to identify and better manage life-threatening disease.2

To engage these men in sexual health discussions, a greater focus on culturally appropriate health services is needed. Cultural competency training is essential to overcome the barriers affecting how Aboriginal and Torres Strait Islander men access health services (Box 1). However, the sex-specific nature of some barriers and the impact of traditional and cultural roles on health service access pathways for men often require further attention, particularly for more culturally sensitive issues such as sexual health.

There are many other strategies and practical approaches that health services and primary health care professionals can implement to better engage Aboriginal and Torres Strait Islander men in positive and broader help-seeking behaviour and health service access (Box 2).6 Being able to implement such strategies may be an indirect reflection on the ability of health services to support cultural respect and provide culturally safe health care more broadly.

1 Factors influencing health service access and help-seeking behaviour for Aboriginal and Torres Strait Islander men4,5

Societal

Illness-related stigma
Sex-specific differences in health

Cultural

Traditional gender-related law, masculinity and gender roles
Language barriers
Beliefs around causation

Logistical

Lack of transport
Conflict of appointment times with other family and community priorities (eg, ceremonies)

Health system

Limited access to specialist services and/or treatment
Complicated referral process
Too few (male) health professionals, leading to patients seeing many different doctors
Medical terminology and jargon

Financial

Difficulties in meeting health service costs

Individual

Knowledge or perception of the nature of the illness
Previous illness experience
Low prioritisation of preventive health care
Lack of understanding and embarrassment
Low self-esteem and confidence

2 Examples of culturally appropriate strategies for engaging with Aboriginal and Torres Strait Islander men about sexual health issues

Provide a safe, private and comfortable environment that supports open and free dialogue
Men may not open up in the first consultation — take time to build trust and respect
Encourage men to have annual health assessments and incorporate sexual health questioning into these
Make the clinic conducive to talking about sensitive issues; for example, a model of the male pelvis in the consulting room might help initiate discussion
If only female health care providers are available, approach gender-specific issues in a sensitive way and use male Aboriginal health workers for advice or, if not urgent, refer to a male general practitioner

Experiencing racism in health care: the mental health impacts for Victorian Aboriginal communities

Racism can be broadly defined as the behaviours, practices, beliefs and prejudices that underlie avoidable and unfair inequalities across groups in society based on race, ethnicity, culture or religion.1 Racism is often conceptualised at three different levels, which overlap in practice: interpersonal racism, internalised racism and systemic or institutional racism.2,3

The link between self-reported experiences of racism and poorer physical and mental health is well documented.4 There is ample evidence that racism contributes to worse health among Aboriginal Australians.5–9 There is also evidence that there are differences in the health care provided to Aboriginal and other Australians and that these differences can contribute to worse health outcomes.10 This in turn suggests that the deleterious effects associated with exposure to racism are likely to be amplified in health settings compared with other settings because of the impacts on future health-seeking behaviour and quality of care in addition to negative psychological and physiological effects.

To date, there has been little research examining exposure to racism in health settings and its impacts on mental health, particularly in comparison with other settings.4 This research is important to informing appropriate antiracism interventions. In this paper we explore three research questions:

How frequently do Aboriginal Australians experience racism in health settings?
Are Aboriginal Australians in some demographic groups more likely to encounter racism in health settings than others?
What are the mental health impacts of exposure to racism in health settings compared with exposure to racism in other settings?

Methods

Survey design

The Aboriginal Experiences of Racism surveys were conducted in two rural and two metropolitan Victorian local government areas (LGAs). These localities were selected for their high levels of cultural diversity compared with other Victorian localities, rather than because of particular concerns about racism in these communities.

Local Aboriginal community interviewers were recruited and trained to administer the surveys with support from the research team. Survey participants were recruited through the interviewers’ professional and personal networks. Participants were aged 18 years or older and had lived within their locality for at least 1 year. Surveys were administered face-to-face in group or individual sessions. Interviewers kept consent forms and surveys in separate envelopes at all times in order to reassure participants that their confidentiality would be protected.

Surveys were administered between 1 December 2010 and 31 October 2011. The full survey design and methods are described in the report Mental health impacts of racial discrimination in Victorian Aboriginal communities.11 The study received ethics approval from the University of Melbourne (0932878.6).

Key variables

The key variables used in this paper include:

demographics: Aboriginality, age, sex and education;
types of interpersonal racism experienced in the past 12 months;
settings within which people experienced interpersonal racism;
mental health, assessed using the 5-item scale based on the Kessler Psychological Distress Scale (K5).12 The reliability of the scale was high among this sample (Cronbach α = 0.85).

For full survey variables used in this paper, please see Appendix 1.

Data analysis

IBM SPSS Statistics version 21 was used to analyse the data. Descriptive analyses were conducted on the demographic composition of the sample, the proportion of people who experienced racism in different settings in the past 12 months and the types of racism experienced in health settings. Logistic regression was used to assess demographic differences between people who reported experiencing racism in health settings and people who did not. The analysis controlled for LGA. Logistic regression was used to assess the relationship between participants’ experiences of racism in the past 12 months and being above the threshold for high or very high psychological distress on the K5 scale. Experiences of racism were classified into health settings, other settings and none. Scores of 12 to 25 on the K5 scale are indicative of high or very high psychological distress.12 The analysis controlled for LGA, age, sex and education.

Results

A total of 755 people participated in the Aboriginal Experiences of Racism survey, with a 99% response rate across all LGAs. Demographic data for participants is presented in Box 1. Participants from Rural Councils 1 and 2 made up most of the sample, with Metropolitan Councils 1 and 2 each having fewer than 100 participants. The proportion of the Aboriginal population over 18 years old surveyed was 27% in Rural Council 1, 32% in Rural Council 2, 14% in Metropolitan Council 1 and 7% in Metropolitan Council 2.13 Most participants were women (61.4%), with a mean age of 36 years. About one-fifth of participants held either tertiary, trade or TAFE qualifications (Box 1). The 2011 Census reports that across the four LGAs, most Aboriginal residents over 18 years old are women (55%) with a mean age of 38 years. In the 2011 Census, 11.3% of Aboriginal residents aged 15 years and over in these LGAs held tertiary, trade or TAFE qualifications.13

Experiences of racism

Nearly all participants (97%) reported at least one racist incident in the preceding 12 months, with 25% reporting between one and seven experiences, 38% reporting between eight and 11 experiences and 34% reporting 12 or more experiences.

Participants indicated that racism was most commonly experienced in shops and public spaces, as reported by 67% and 59% of participants, respectively. Nearly one-third of the sample reported experiencing racism within health settings. For details of experiences across all settings, please refer to the full report.11

Within health settings, participants most frequently reported being a target of racist names, jokes or teasing, or hearing comments that relied on stereotypes of Aboriginal Australians. This experience was reported by 52% of respondents who reported racism in this setting. Ten per cent of respondents who reported experiencing racism in health care indicated that they had been told that they “didn’t belong in Australia”, that they should “go home”, or “get out” within this setting (Box 2).

People aged more than 24 years and people educated at university level or higher were more likely to report experiencing racism within health care (Box 3). However, there were no significant differences between the proportion of men and women who experienced racism in this setting (Box 3).

People who experienced racism in health settings were more likely to be above the threshold for high or very high psychological distress compared with respondents who reported no experiences of racism. Respondents who experienced racism in non-health settings were also significantly more likely than people who did not experience racism to be above the threshold for high or very high psychological distress. The association was less marked than in health settings (Box 4).

Discussion

Almost every Aboriginal Victorian who participated in this survey had experienced at least one racist incident in the previous 12 months.

Nearly a third of people in the study reported racism in health settings in the past 12 months, suggesting considerable room for improvement in creating safe spaces for Aboriginal people. Our study adds to the existing literature on health care provider racism14–16 by showing that experiencing racism in health settings is associated with psychological distress. It is innovative in suggesting that racism in health settings may have a more negative impact than racism in other settings. Racism in health settings may contribute to poorer health through stress-mediated pathways as well as through reduced quality of health care and limited access to health services and other resources that protect and promote health (Appendix 2).17,18

Experiences of racism were less common in health settings than in most other settings, which may in part reflect investment in reducing racism as part of the pathway to improving health care. The need to improve the capacity of mainstream services to meet the needs of Aboriginal Australians has been recognised in National Partnership Agreements to close the gap in Indigenous health outcomes through initiatives to improve cultural competency among mainstream services providers.19,20 However, there has been a lack of effort to evaluative these initiatives and where evaluation has been undertaken, it has thus far focused on changes in providers’ attitudes, rather than examining impacts on patient experiences of racism.21 There is therefore little evidence about effective ways of reducing patient exposure to racism within health care settings, including within Australia.22 Nevertheless, a number of evidence-based principles for reducing racial bias in health care providers are supported by social-cognitive psychology, including a focus on individual attributes rather than categorical stereotypes, an improved understanding of bias, enhancement of providers’ confidence in interacting with members of dissimilar groups, and improvement in perspective-taking and affective empathy.23 There is also some evidence that developing comprehensive models of care that are orientated to Aboriginal people can have positive impacts on the quality of care.24 Future systematic assessment of cultural competency initiatives will be essential for understanding how best to improve patient experiences in health care settings, and how to conceptualise the intervening steps between practitioner training and patient perspectives.

The results suggest that some Aboriginal Australians are more likely to report experiences of racism than others. Aboriginal Australians who have higher levels of formal education reported higher levels of discrimination than their peers with lower levels of education. This effect was particularly marked for the small number of Aboriginal Australians with university education in the sample. The finding that more educated people in minority groups report higher exposure to racism is consistent with the research literature and is considered to result from a combination of both greater exposure to racism and a higher likelihood of perceiving and reporting experiences of racism.25 People aged over 25 years were more likely to be exposed to racism than younger people. This may reflect differences in actual experiences or be associated with greater use of health services among people aged over 25.

The study has a number of limitations. The survey was cross-sectional, so it is possible that reverse causation is a factor in some of the associations reported. However, existing longitudinal studies suggest that racism is associated with worse health rather than the converse.

While random sampling was not used in this study, the sample demographic profile across the four LGAs closely matches the combined Census profiles.13 The purpose of this study was to explore the associations between experiences of racism and mental health outcomes, rather than examining the prevalence of racism within or between the four localities. Selection into the study was not based on either exposure to racism or mental health status; accordingly, the validity of the relationship observed between experiences of racism and mental health status would not be expected to be affected by the selection process.

The study did not examine characteristics of perpetrators in depth. It is therefore unknown whether racist incidents in health settings were initiated by health care staff, patients or others. Additionally, the study did not assess the type of health services where the racism occurred. Studies providing more setting-specific detail and data about perpetrators would greatly add to the existing literature.

Our study highlights that experiencing interpersonal racism in health settings is associated with increased psychological distress which itself is an indicator of increased risk of mental illness. Such a finding supports the rationale for improving cultural competency and reducing racism as a means of closing the health gap between Aboriginal and non-Aboriginal Australians. Capitalising on this investment will require explicitly evaluating the impact of these initiatives on reducing patient experiences of racism.

1 Demographics of 755 survey participants

Variable	Participants*

Local government area
Rural Council 1	313 (41.5%)
Metropolitan Council 1	90 (11.9%)
Metropolitan Council 2	57 (7.5%)
Rural Council 2	295 (39.1%)
Sex
Male	284 (38.6%)
Female	451 (61.4%)
Age, years
18–24	178 (26.4%)
25–34	175 (26%)
35–44	174 (25.9%)
45–54	90 (13.4%)
55+	56 (8.3%)
Education
Below year 10	111 (17.2%)
Year 10	249 (38.7%)
Year 12	108 (16.8%)
TAFE/trade	128 (19.9%)
University	48 (7.5%)
Number of experiences
None	26 (3.4%)
Low (1–7)	191 (25.3%)
Medium (8–11)	285 (37.7%)
High (12 +)	253 (33.5%)

* Denominators vary due to missing data.

2 Aboriginal Victorians’ experiences of racism within health settings

3 Demographic characteristics of survey participants and experiences of racism in health care settings in the past 12 months

Demographic characteristics of participants

Experienced racism in a health care setting in past 12 months

Proportion of respondents

Odds ratio
(95% CI)*

Under 24 years old

Yes

25.0%

0.53 (0.35–0.80)

< 0.001

33.5%

University education

Yes

47.9%

2.60 (1.37–4.97)

< 0.001

29.6%

Female

Yes

32.6%

0.79 (0.56–1.12)

0.18

29.4%

* Odds ratio adjusted for local government area.

4 Experiences of racism in the past 12 months by setting and being above the threshold for high or very high psychological distress

Experiences of racism by setting

Over the threshold for high or very high psychological distress

Odds ratio
(95% CI)*

None

24.1%

1.00†

In health care setting

62.4%

4.49 (2.28–8.86)

< 0.001

In other setting

47.3%

2.66 (1.39–5.08)

0.03

* Odds ratio adjusted for local government area, age, sex and education. † Reference category.

Experiencing racism in health care: the mental health impacts for Victorian Aboriginal communities

How frequently do Aboriginal Australians experience racism in health settings?
Are Aboriginal Australians in some demographic groups more likely to encounter racism in health settings than others?
What are the mental health impacts of exposure to racism in health settings compared with exposure to racism in other settings?

Methods

Survey design

Key variables

The key variables used in this paper include:

demographics: Aboriginality, age, sex and education;
types of interpersonal racism experienced in the past 12 months;
settings within which people experienced interpersonal racism;
mental health, assessed using the 5-item scale based on the Kessler Psychological Distress Scale (K5).12 The reliability of the scale was high among this sample (Cronbach α = 0.85).

For full survey variables used in this paper, please see Appendix 1.

Data analysis

Results

Experiences of racism

Discussion

Almost every Aboriginal Victorian who participated in this survey had experienced at least one racist incident in the previous 12 months.

1 Demographics of 755 survey participants

Variable	Participants*

Local government area
Rural Council 1	313 (41.5%)
Metropolitan Council 1	90 (11.9%)
Metropolitan Council 2	57 (7.5%)
Rural Council 2	295 (39.1%)
Sex
Male	284 (38.6%)
Female	451 (61.4%)
Age, years
18–24	178 (26.4%)
25–34	175 (26%)
35–44	174 (25.9%)
45–54	90 (13.4%)
55+	56 (8.3%)
Education
Below year 10	111 (17.2%)
Year 10	249 (38.7%)
Year 12	108 (16.8%)
TAFE/trade	128 (19.9%)
University	48 (7.5%)
Number of experiences
None	26 (3.4%)
Low (1–7)	191 (25.3%)
Medium (8–11)	285 (37.7%)
High (12 +)	253 (33.5%)

* Denominators vary due to missing data.

2 Aboriginal Victorians’ experiences of racism within health settings

3 Demographic characteristics of survey participants and experiences of racism in health care settings in the past 12 months

Demographic characteristics of participants

Experienced racism in a health care setting in past 12 months

Proportion of respondents

Odds ratio
(95% CI)*

Under 24 years old

Yes

25.0%

0.53 (0.35–0.80)

< 0.001

33.5%

University education

Yes

47.9%

2.60 (1.37–4.97)

< 0.001

29.6%

Female

Yes

32.6%

0.79 (0.56–1.12)

0.18

29.4%

* Odds ratio adjusted for local government area.

4 Experiences of racism in the past 12 months by setting and being above the threshold for high or very high psychological distress

Experiences of racism by setting

Over the threshold for high or very high psychological distress

Odds ratio
(95% CI)*

None

24.1%

1.00†

In health care setting

62.4%

4.49 (2.28–8.86)

< 0.001

In other setting

47.3%

2.66 (1.39–5.08)

0.03

* Odds ratio adjusted for local government area, age, sex and education. † Reference category.

Mental health emergency transport: the pot-holed road to care

Historically, police have had powers under successive mental health legislation to apprehend people with mental illnesses without a warrant. This is a widespread practice around the world and in all Australian states. Further, police are frequently the first point of contact for people with a mental illness in the Australian community, particularly after hours when mental health crisis team resources are limited.1 However, people living with mental illness are increasingly recognised as a vulnerable population with high rates of exposure to traumatic life events;2 and many are exposed to distressing experiences within mental health care systems. Being transported in handcuffs in a police vehicle has recurrently been reported as particularly distressing3 (see also John’s experience in the fictional scenario4). A submission to the Australian Human Rights Commission’s “Not for Service” inquiry summed up the experience within the context of perceived mental health service failures:

Because intervention comes so late, consumers and families report that once the police are involved and no matter how the police are, there is still a sense of not being treated with dignity . . . “I know when I get sick that I quickly lose insight and will resist treatment but I am sick and there I am being handcuffed by police. No other groups of people with an illness are treated like this. Why are we? Surely there can be a better way. I think it starts with me being able to say, I’m becoming unwell and clinicians taking me seriously”.5

Recent changes to legislation in New South Wales sought to reduce police involvement in mental health by expanding state coercive powers to paramedics and registered mental health practitioners. While paramedics are taking on more emergency mental health responsibilities, police involvement does not appear to have been substantively reduced. New ways of thinking about community mental health responses are required. The primary aim of this discussion is to explore factors that may contribute to ongoing reliance on police involvement in transporting people affected by mental illness, by examining the Mental Health Act and the ensuing interagency response to mental health incidents.

Current mental health legislation

Under the current Mental Health Act 2007 (NSW), police may apprehend and transport a person to a declared mental health facility (DMHF) for psychiatric assessment if the officer believes the person: is committing or has recently committed an offence; has recently attempted or is probably going to attempt to kill himself or herself or someone else; or will probably attempt to cause serious physical harm to himself or herself or someone else (s. 22(1)(a)); and that it would be “beneficial to the person’s welfare” to be dealt with under mental health, rather than criminal, legislation (s. 22(1)(b)). This is in keeping with the enacted mission statement of the NSW Police Force, which provides for “the protection of persons from injury or death . . . whether arising from criminal acts or any other way” (Police Act 1990 (NSW), s. 6(3)(b)). The Mental Health Act allows police to divert people whom they suspect have a mental illness to health system, rather than justice system, end points.

The remarkable revisions enacted in the 2007 Mental Health Act extended state coercive powers to NSW Ambulance paramedics (s. 20) and other accredited NSW Health practitioners (s. 19 and s. 23), authorising them to detain and transport people living with mental illness to a DMHF for assessment. Paramedics and mental health practitioners were given powers to use “reasonable force” (s. 81(2)(a)) and physical restraint (s. 81(2)(b)), and trained paramedics could administer sedation (s. 81(3)). Paramedics were given authority to request police involvement where there were serious concerns for safety (s. 20(2)), and both paramedics and mental health practitioners could request police assistance, where practicable (s. 21(1)).

Evaluating the outcomes of changes to the Mental Health Act

Statewide statistics provided by the NSW Mental Health Review Tribunal (MHRT)6 suggest that transport by police (under s. 22 of the Mental Health Act) has remained stable, at about 20% of all presentations to DMHFs. In contrast, transport by paramedics (under s. 20) has increased to 6% (Box). These data do not include transport by police under other sections of the Act.

The Ambulance Service of NSW has estimated that of all occasions of transporting people affected by mental illness in an ambulance, only about 2% per year involve involuntary transport (personal communication, Kevin McLaughlin, Manager Mental Health, Ambulance Service of NSW). This low scheduling rate may reflect NSW Ambulance policy that decisions undertaken by paramedics to transport a person against his or her will should be viewed as an option of last resort. Further, it may reflect people’s preference to be taken to the nearest health facility that has the resources to provide care, which may not necessarily be a DMHF if people agree to be transported voluntarily.

The NSW Police Force estimated that they responded to about 34 000 mental health-related incidents statewide in 2009.7 In 2012, there were 38 534 such incidents, with about two-thirds resulting in a designated police function under the Mental Health Act (eg, transfer from court, interhospital transport) and including about 12 000 occasions of police detaining people under s. 22 (data obtained by M I). In the 6 months to May 2013, police detained 6149 people under s. 22 of the Mental Health Act across NSW, according to the NSW Police database (Computerised Operational Policing System [COPS]; data obtained by M I). Police do not necessarily transport all people detained under s. 22. Increasingly, people detained by police are then transported by ambulance to a DMHF; however, no records of this are kept. Further, there is a significant discrepancy between the number of people detained involuntarily by police in 2012 recorded by NSW Police and the number recorded by the MHRT (12 000 v 3000, respectively) that challenges the veracity of the available data. High-quality baseline data are required for accurately estimating the extent of police and ambulance involvement in the transport of people with mental illness across regions, and for evaluating outcomes resulting from changes to policy.

Problems with the current legislation

Risk of serious harm is the guiding principle

Under the Mental Health Act, a mentally ill or mentally disordered person is a person who is suffering from mental illness (s. 14) and/or whose present behaviour is “so irrational” (s. 15) that immediate care, treatment or control is necessary to protect the person or others from serious harm. “Risk of serious harm” is the guiding principle in any decision by mental health practitioners, paramedics and police to invoke a non-consensual intervention under the Mental Health Act.

The most significant implication of the sole reliance on this criterion is that a person’s mental health must deteriorate to the point that they become a serious harm risk before intervention through non-consensual action is legitimate. At the point where a person living with mental illness reaches a point of risk of serious harm, the probability of police involvement appears to increase according to the severity of risk.

Lack of capacity is not taken into account

Decisional capacity refers in this context to the mental competence of a person to make his or her own health care decisions. Legally and ethically, it is argued that competence is essential for autonomy, as only competent decisions reflect a person’s free will.8 Two important assumptions regarding decisional capacity should be noted: first, capacity is not necessarily global to the person but may be relative to a situation or decision; and second, it is a threshold concept, perhaps best understood in terms of a degree of capacity.9 The formal assessment of capacity must be made by a trained clinician, but carers and people living with mental illness may become attuned to signs that a period of diminishing capacity may be approaching.

A strong proponent for the use of capacity as a criterion in mental health legislation, Ryan, argues that the loss of capacity is not an all-or-none phenomenon, and suggests that a range of supported decision-making processes, including advance directives, could be instigated.10 This may help fill the apparent gap in service provision between when a person loses decisional capacity and when they pose a risk of serious harm. Ryan and others have argued that using capacity to determine the threshold for non-consensual treatment would provide a legal and ethical justification for earlier intervention.10 Doctors, carers, mental health practitioners and people living with mental illness could activate a legal mechanism for non-consensual intervention for assessment before the onset of high-risk behaviour. In principle, this has the potential to increase the capacity of mental health services to assist people living with mental illness, and may reduce the necessity for emergency responses.

The Act embodies legal, not benevolent, paternalism

The current mental health laws have evolved from centuries-old English laws that originally served the purpose of protecting society (preventive detention).11 Over time, the focus became care and treatment for the person — benevolent paternalism (parens patriae)12 — by which “we decide for him as we assume he would decide for himself if he were of sound mind”.11

Under the current Mental Health Act, however, paternalism is based on criteria other than the individual’s own presumed choices. This legal paternalism, based on harm, is distinguishable from benevolent paternalism, which would be based on capacity. This is a disquieting ethical–legal contradiction deserving the attention of policymakers.

Implications for practice of the changes to the Mental Health Act

A memorandum of understanding (MOU) was developed between NSW Health, the Ambulance Service of NSW and the NSW Police Force to delineate interagency roles and responsibilities during a mental health emergency. It stipulates that police should be involved only in high-risk situations.13 Nevertheless, the capacity of the MOU to cover the complexities of real-world mental health emergencies is limited by practicalities — for instance, mental health practitioners may not be available after hours; there may not be onsite interagency agreement on the person’s presenting level of risk; nor may there be ready availability of an appropriate transport vehicle. Additionally, in the many regional and rural centres across NSW, the drive to the nearest DMHF may involve extreme distances and take a long time.

Advances in online technologies and the availability of videoconferencing call into question the transporting of people living with mental illness long distances for assessment. The Mental Health Emergency Care — Rural Access Program trialled the use of videoconferencing to provide rural and regional hospitals in western NSW with timely access to expert mental health assessments.14 Among other positive outcomes, there was a significant reduction in the referral rate (ie, transport) to the distant DMHF, from 73% to 52% of all admissions by the end of the 20-month study. The program has continued as usual practice at the trial site and is being extended to neighbouring areas.

A number of other strategies are being developed with the aim of limiting the occasions when police are the primary providers of transport for people living with mental illness and reducing police involvement to an interagency support role. For instance, NSW Health has developed a fabric mechanical restraint device that is now used by paramedics when physical restraint is required. This reduces the use of police handcuffs and caged vehicles, and enables clinical monitoring of the person during ambulance transport.

For people living with mental illness, access to voluntary inpatient services is an important consensual pathway to care; however, access is not universal. Regional and rural areas in particular are poorly served. For the foreseeable future at least, the pathway to inpatient assessment for many people continues to involve emergency transport to DMHFs. Limiting the need for police attendance may be achieved by developing a model of care that aims to prevent situations where police are involved in mental health interventions.

Ethics in practice: case scenario

In the accompanying scenario4 there is a point where John’s parents and his caseworker, Kate, are all concerned that John is showing signs of serious deterioration. At the point where Kate advises John’s parents that she cannot force John to receive care there may be strong ethical grounds for non-consensual intervention. It appears that John’s decisional capacity has been reduced by his illness, perhaps beyond the point where he could be considered competent enough to be self-determining. At this point, Kate could arrange for a clinician who is qualified to assess capacity to visit John to determine whether his decisional capacity is critically compromised. If so, the Mental Health Act could be invoked to transfer responsibility for care decisions temporarily from John to the state, to provide the care that John would presumably choose for himself were he of sound mind.

Conclusions

The issue of ongoing police involvement in mental health services beyond high-risk situations is vexed. Two major contributors to ongoing reliance on police involvement are the enacted risk-of-serious-harm criteria and rural and regional resourcing issues.

There is an ethical imperative for earlier intervention in mental health situations. While police will always need to attend situations involving high risk for any member of the community, an earlier, more therapeutic intervention is required for a person living with mental illness who is losing the capacity to determine his or her own health care needs. A legal mechanism for non-consensual assessment based on decisional capacity could be explored. People living with mental illness could be supported, during periods of capacity, to identify indicators of diminished capacity as key intervention points, and doctors making clinical assessments in chronic and potential first-episode psychosis could give serious consideration to capacity. Thinking about capacity at an earlier intervention point may reduce the number of people requiring an emergency response. Further, making telehealth programs available in more rural and regional areas could help minimise long-distance transport. The establishment of reliable incidence statistics for emergency mental health transport would enable accurate assessment of the effects of policy changes on practice.

Ideally, people living with mental illness should be able to access quality mental health services voluntarily, long before non-consensual intervention is required. Once voluntary options have been exhausted, the point at which a person loses decisional capacity may represent an earlier, more benevolent juncture for non-consensual intervention. Reaching the point of emergency services intervention in a mental health incident should be the last option along the pot-holed road to care.

Statewide statistics concerning people taken to a mental health facility under the Mental Health Act 2007 (NSW)7

	Police (s. 22),* no. (%)			Ambulance (s. 20),* no. (%)
Financial year	Admitted	Not admitted	Total†	Admitted	Not admitted	Total†	Total no. presentations‡

2008–09	2712 (80%)	682 (20%)	3394 (22%)	263 (99%)	4 (1%)	267 (2%)	15 496
2009–10	2536 (74%)	889 (26%)	3425 (23%)	494 (85%)	88 (15%)	582 (4%)	15 199
2010–11	2293 (71%)	940 (29%)	3233 (22%)	669 (69%)	301 (31%)	970 (7%)	14 566
2011–12	2150 (69%)	968 (31%)	3118 (20%)	742 (73%)	272 (27%)	1014 (6%)	15 765

* These data refer to the Mental Health Act ss. 20 (paramedics) and 22 (police) only and do not include mental health transports by police under other sections of the Act, including police assistance to ambulance (s. 21), doctors and accredited persons (s. 19), carers (s. 23 and s. 26), courts (s. 33), breach of Community Treatment Orders (s. 142 and s. 58), nor voluntary or informal transports by police or paramedics. † Proportion of total agency (police or ambulance) transports (under schedule) to total presentations at mental health facilities (NSW Health). ‡ Does not include people reclassified from informal to involuntary.

A functional dependence? A social history of the medical use of morphine in Australia

The history of morphine use in Australia has shaped public perception and current challenges

Morphine has had an important role in the history of Australia and continues to play a major part in the medical, social and economic aspects of this country.1 The extent of its multitude of uses (and misuses), its constant depiction in the media, and its role in the history of Australia have created a complex public understanding of the drug. There is a broad array of perceptions regarding addiction, tolerance, fear of side effects and an association with death, which may complicate morphine’s use in clinical care.2 An understanding of the history of morphine in Australia can enable a greater understanding of its current use, and provide some background to the increases in opioid prescription seen in the past two decades.3,4

Such a rapid expansion in the use of medical morphine has been experienced before in Australia, on a much greater scale, towards the end of the 19th century before the creation of a regulatory system.5 Although Australia currently has the fifth highest per capita consumption of licit morphine, this is a marked decrease from the first half of the 20th century — in 1936, 14% of the world’s legally produced morphine was consumed by Australia, which then had a population of 6.7 million.4,6

Here, we review the history of morphine use and regulation in Australian society, and consider how the past may influence the attitudes and perceptions of the present. We searched the following electronic databases for studies published in English: MEDLINE (1950 – March 2013), the Cochrane Library, PsycINFO (1806 – March 2013), CINAHL, EMBASE (1980–2013), PubMed and ProQuest. Search terms included morphine, opioids, Australia, narcotics and law. These electronic searches were supplemented by hand searches of key references cited, including historical sources.

Early use of morphine

Opium was widely used and unregulated in colonial Australia, although records of its early use are incomplete. Increased use coincided with the arrival of Chinese immigrants during the gold rush of the 1850s, as this population had high rates of opium use for recreational purposes following British importation of opium to China and the subsequent Opium Wars.5,7,8 It was widely available as a raw product, often used for smoking or dissolved in alcohol as a mixture known as laudanum.

Morphine was originally isolated from opium in 1804 by German pharmacist Friedrich Sertürner, but it was initially difficult and expensive to manufacture.9 Laudanum, by contrast, was readily available, cheaper, well known to doctors and patients alike, and showed similar clinical benefits, although it varied greatly in strength and additives. It was not until the introduction of the modern hypodermic needle in 1853 that morphine became more readily used by physicians, initially for surgical interventions.9 The American Civil War (1861–1865) saw the first use of morphine on a wider scale, where, especially due to its multiple routes of administration and short onset of action, it was recognised for its utility.

Morphine gained popularity in Australia in the 1860s, marketed as an antidiarrhoeal medicine for infants and young children at a time when infantile diarrhoea was responsible for around a quarter to half of all infant deaths.10 Morphine and laudanum were sold virtually unregulated, often by door-to-door salesmen in the form of mixtures, powders and lozenges. The use of morphine increased as physicians became more accustomed to prescribing, dispensing and administering the drug, and societal recognition increased due to marketing through newsprint and magazines.10 Compared with laudanum, which was often inconsistent in strength, morphine was recognised as having standardised dosing and therefore a predictable effect.

Growing concerns

The wide availability of opioids continued unregulated, with neither the public nor government expressing appetite for change, for two main reasons. First, the morbidity associated with infantile diarrhoea ensured great public support for unrestricted availability of a possible remedy. Second, the Australian population was widely dispersed, and with few experienced medical practitioners there was a need for fast access to these medications.10

However, the harmful effects of opioids became increasingly evident over time. In the 1880s, Queensland coroners investigated 98 infant deaths and determined that 15 of these children had been given “infant soother” drugs, most of which contained opioids.10 Coronial records demonstrate that increasing numbers of infant deaths related to opioids were investigated in the 1890s and early 20th century, and doctors became reluctant to sign death certificates in cases where opioids had been used.10 While anxiety surrounding the overuse of opioids for infants grew, for many, the benefits continued to outweigh possible harms.

Australian society seemed largely indifferent to the use of medical opioids for recreational or habitual use, as this practice remained mostly invisible and of little moral consequence.5 The use of opium for smoking was viewed differently, being closely associated with the Chinese population and carrying particular social and racial stigma.8 The Chinese immigrants at the time were poorly accepted in many respects, due to their foreign customs and language, yet the smoking of opium was a very visible vice to which racist sentiment could easily be attached.5 As The Bulletin wrote in 1886, “… where the legions of aggressive stinks peculiar to Chinamen seem ever to linger … The very air of the alley is impregnated with the heavy odour of the drug”.5

Legislative changes

The first Australian laws to limit the supply of narcotics appeared in 1897 in Queensland, largely as a response to the anti-Chinese sentiment surrounding opium smoking rather than as a harm-reduction measure.5 These original laws prohibited the smoking and supply of raw opium but did not address control of medical opioids. In the following 10 years, the remaining states passed similar laws. In 1913, a Bill was passed in Victoria requiring a medical prescription for the supply of opioids, with other states soon following.11

The trend towards regulation soon turned towards criminalisation. With tighter regulation, profiteering from illegal markets increased, and international opinion supported changes aimed at more stringent control, particularly in the United States. The first international drug control treaty was created in The Hague in 1912, with Australia signing the following year.12 The Hague International Opium Convention originally sought to control the international trade of opium and cocaine, but over time placed further restrictions on trade, manufacture and use of all narcotics and psychotropic drugs. At this time, there was a significant cultural shift around the use of opioid medications in the US, which had previously tolerated a free market for these substances, similar to Australia. By 1922, courts had interpreted the Harrison Narcotics Tax Act, passed by the US Congress in 1914, as meaning it was illegal to supply narcotics for people with opioid addiction. Around 25 000 physicians were charged under this legislation in the US, with 3000 serving prison sentences.11

These international influences significantly shaped Australia’s policy on opioids. In 1927, New South Wales passed a Bill providing criminal sanctions against recreational narcotic use and supply. Despite such measures, use continued to grow, with increasing consumption of morphine and heroin nationally.6

A series of legislative acts in the US in the 1950s increased the severity of criminal sanctions for narcotic use and supply, ensuring prescribing of opioids only occurred in narrow, clearly justified circumstances.13 This influence stretched to Australia, with public opinion favouring a criminal justice approach to the problem, leading to increasing numbers of arrests for opioid misuse and supply from 1960 to 1990.11

Conclusion

The history of morphine reflects its effects — of being able to provide great relief or cause significant harm. Despite remaining unchanged as a medication since its discovery, its uses and perception have changed considerably and have been profoundly affected by the legal and political climate in a manner unlike few, if any, other medications in Australia. The place of morphine in our society has been transformed from one of widely unregulated acceptability to decades of intense scrutiny governed by a legal and regulatory framework and increasing levels of public concern. Its uses extend beyond the scope of the medical sphere, as a device of recreation and habit, and also as an important source of legal export income — opioid production is worth about $100 million annually to the Australian economy.1

What the future holds for morphine is uncertain. The history of its use demonstrates the harms of poor regulation and, with a rising tide of deaths attributable to opioids in Australia and internationally, this appears to again be an increasing problem.3 Yet to strictly control these medications, as was done in the mid 20th century, is not without its costs. Society has been adversely affected by the decision to persecute doctors and to not allow supervised access to these medications for patients with genuine pain. Government and media condemnation of opioid use has had a detrimental impact on the public perception of opioids, especially in oncology and treatment of terminal disease, where they may be needed most.2

The impact of the history of use, legal and political attention and media scrutiny appears to have had a significant effect on society’s understanding of morphine. An understanding of the past may provide greater insight into the full effect of this evolving social history, enrich our clinical discussions and provide a discourse to guide future use.

Reports indicate that changes are needed to close the gap for Indigenous health

Major changes in health services are needed to redress health disparities

Two recently released reports from the Australian Institute of Health and Welfare (AIHW) make it clear that there must be major changes in the way health services for Indigenous Australians are delivered and funded if we are to improve Indigenous health and health care and ensure real returns on the substantial investments that are being made.1,2

These reports show Australia’s level of financial commitment to Indigenous health. In the 2010–11 financial year total spending on Indigenous health was $4.552 billion,1 almost double that spent in 2004–05. This was $7995 for every Indigenous Australian, compared with $5437 for every non-Indigenous Australian;1 over 90% of this funding came from governments. The surest sign that this money was not well invested in prevention, early intervention and community services is that most of it (on average $3266 per person but $4779 per person in remote areas) was spent on services for patients admitted to hospitals, while spending on Medicare services and medicines subsidised by the Pharmaceutical Benefits Scheme (PBS) on a per-person basis was less than that for non-Indigenous Australians by $198 and $137, respectively.2

The series of AIHW reports since the 1995–96 financial year highlights both where progress has been made and where programs have failed. There have been considerable increases in funding for primary care, acute care and community and public health. The 2010–11 data do not reflect the full implementation of the Indigenous Chronic Disease Health Package, but do suggest that the measure to subsidise PBS copayments for patients with chronic disease is having an effect, specifically in more remote areas where PBS spending is higher than in regional areas.

On the other hand, it is obvious that access to primary care services in remote areas remains limited, and access to referred services such as specialists and diagnostics is poor for Indigenous people everywhere, even in major cities. Per-person spending on non-hospital secondary services is about 57% of that for non-Indigenous people.2 Indigenous Australians receive nearly all their secondary care in hospitals.

The hospital data hammer the story home. In 2010–11, the overall age-standardised separation rate of 911 per 1000 for Indigenous people was 2.5 times that for non-Indigenous people; for people living in the Northern Territory the rate was 7.9 times that for non-Indigenous people.3

About 80% of the difference between these rates was accounted for by separations for Indigenous people admitted for renal dialysis, but further examination highlights how a lack of primary care and prevention services drives increased hospital costs. In 2010–11, total expenditure on potentially preventable hospitalisations for Indigenous Australians was $219 million or $385 per person, compared with $174 per non-Indigenous Australian.3 For all Australians most of this spending is for chronic conditions like complications from diabetes, but, too often, Indigenous Australians are hospitalised for vaccine-preventable conditions like influenza and pneumonia, acute conditions like cellulitis, and injury.

Avoidable hospitalisations are an important indicator of effective and timely access to primary care, and provide a summary measure of health gains from primary care interventions. The inescapable reality is that current primary care interventions are not working.

We know what the problems are. Around two-thirds of the gap in health outcomes between Indigenous Australians and other Australians comes from chronic diseases such as cardiovascular disease, diabetes, respiratory diseases and kidney disease.4 Suicide and transport accidents and other injuries are also leading causes of death.5 Half of the gap in health between Indigenous and non-Indigenous Australians is linked to risk factors such as smoking, obesity and physical inactivity.6 A number of studies have found that between a third and half of the health gap is associated with differences in socioeconomic status such as education, employment and income.7

The 2006 Census (the latest available data) found that 39% of Indigenous people were living in “low resource” households (as defined by the Australian Bureau of Statistics8), almost five times the non-Indigenous rate.9 Such disparities in income limit Indigenous people’s capacity to pay for health care and provide some context for why they are more likely to use public hospitals than privately provided services that require copayments.

There are commitments from all the major stakeholders, political parties and policymakers to close the gap. There is a new National Aboriginal and Torres Strait Islander Health Plan 2013–2023. And, arguably, there are enough funds if these are spent wisely. What is needed is a new approach to how health care is developed for and delivered to Indigenous Australians.

The approach needs to be grounded in three broad principles:

Adhering to the principle of “nothing about me without me”.10 Shared decision making must become the norm, with patients and their needs at the centre of a system they drive.
Addressing the social determinants of health, in particular, the impact of poverty.
Addressing cultural barriers in the way that Indigenous people want.

These are not new ideas and all the right words are in the new national health plan, as they were in the previous strategy document — cross-portfolio efforts, partnership, sustainability, culturally competent services, community, a rights-based approach to providing equal opportunities for health. What we must do is move beyond these fine words to meaningful action.

We have the exemplar of how to do this with Aboriginal Community Controlled Health Organisations (ACCHOs), and we need to (i) provide increased opportunities for engagement, collaboration and service delivery with ACCHOs and (ii) expand this way of working into mainstream services. This will require a different approach to policy development and implementation.11

The key barriers to health care for urban and remote populations alike relate to availability, affordability and acceptability12 and the dominance of biomedical models of health.13 ACCHOs are a practical expression of self-determination in Indigenous health and health service delivery,14 and have been very successful at reducing many of the barriers that inhibit Indigenous access to mainstream primary care.15 Importantly, ACCHOs provide both cultural safety, which allows the patient to feel safe in health care interactions and be involved in changes to health services, and cultural competence, which reflects the capacity of the system to integrate culture into the delivery of health services.16

However, the success of the design and work practices of ACCHOs have had little influence on the mainstream health system17 which remains, necessarily, the source of health care for many Indigenous people. And it can be argued that the current funding and regulatory practices of Australian governments are a heavy burden and consume too much of the scarce resources of ACCHOs in acquiring, managing, reporting and acquitting funding contracts.18

Governments and all stakeholders, including Indigenous people themselves, need to be bold enough to redesign current mainstream health policies, programs and systems to better fit Indigenous health concepts, community needs and culture. This approach should not be seen as radical — it is where we are currently headed with Medicare Locals. We should not ignore the fact that ACCHOs have led the way in developing a model of primary health care services that is able to take account of the social issues and the underlying determinants of health alongside quality care.19 Tackling these reforms will therefore benefit all Australians, but especially those Indigenous people who currently feel disenfranchised. Without real and meaningful change, we are all condemned to more government reports bearing sad, bad news and a continual yawning gap of Indigenous disadvantage.

Human rights trauma and the mental health of West Papuan refugees resettled in Australia

Concerns have been raised about human rights violations occurring over an extended period of time in West Papua, although the flow of information is limited because of restrictions in access to the province.1–5 The territory occupies the western half of the New Guinea landmass and was a Dutch colony until 1966, when it was annexed by Indonesia after a referendum that was widely regarded as invalid.2 Since then, there has been an ongoing resistance war aimed at achieving independence for West Papua, with reports of human rights violations including murder, torture and other forms of abuse. In addition, the indigenous population live in conditions of socioeconomic underdevelopment in spite of the wealth generated by the exploitation of natural resources.1–4

The ongoing conflict has resulted in a number of refugees seeking asylum in neighbouring Papua New Guinea and Australia. Refugees have been targeted directly by the Indonesian military for having an association with the independence movement.2,3,5,6 Most refugees are settled in Papua New Guinea, given that the onward trip to Australia is fraught with danger and uncertainty about achieving residency status.

The existing community of West Papuan refugees in Australia have permanent residency visas, the right to work and to health and social services, including English language training.

To our knowledge, there have been no systematic reports to date on the traumas, stresses and mental health of West Papuan refugees living in Australia.2 In this study we aimed to explore West Papuan refugees’ reported exposure to human rights violations and other traumas in West Papua, their ongoing living difficulties, particularly those associated with separation from their homeland, and manifestations of mental distress consistent with these experiences.

Methods

The study was undertaken between October 2007 and November 2010. We adopted a mixed-methods approach, combining mental health measures and in-depth interviews, following a procedure that is consistent with the Consolidated criteria for reporting qualitative research (COREQ).7 We were guided by the theoretical perspective of pragmatism, affording equal weighting to the quantitative and qualitative data,8,9 and drawing on the principles of complementarity, where quantitative and qualitative methods are used to address different facets of the same problem, and confirmation, where the results of two methods are examined to assess for convergence, dissonance or ambiguity.8

Study sample

West Papuan leaders estimated that there were 60 refugees residing in Australia, forming our target group. We applied a snowball recruitment method, with early participants assisting in locating and approaching other members of the West Papuan community who had arrived as refugees. We achieved an 88% response rate, with 37 men and 7 women participating. Of the total 44 participants, 28 resided in Melbourne, and 16 in North Queensland; however, members of the community tended to move between the two locations for work purposes. The gender balance reflects the pattern of migration, with more men leaving West Papua as refugees.

Six of those approached refused interviews because of fear of reprisal, and four returned to West Papua before their interview. We could not contact the remaining six identified West Papuan refugees. Given that several participants did not know their date of birth, we derived broad age groupings as follows: 19–30 years (14 participants), 31–40 years (17), 41–50 years (six) and 51 years and over (seven). Twenty-eight participants were single, 11 were married and four had been married previously. Sixteen participants were students, 20 were employed in agriculture (mainly on banana plantations), and the remainder were unemployed. To ensure protection of identities, we did not record actual dates of arrival in Australia. Nevertheless, we could confirm that most participants arrived in Australia during two migration waves (1980–1986 and 1995–1996), with a small number resettled in the 1970s.

Measures

The Harvard Trauma Questionnaire (HTQ) is the most widely used measure of post-traumatic stress disorder (PTSD) in the refugee and post-conflict mental health field.10 Two threshold scores have been applied in the literature: the commonly-used clinical cut-off of 2.5 and the lower cut-off of 2.0.11 The measure also lists commonly experienced human rights-related traumas and related severe stresses (scored 0 for no, 1 for yes), yielding a summary score of premigration potentially traumatic events (PTEs). Based on preliminary focus group data, we adapted the list to include items relevant to West Papua. Similarly, the Post-Migration Living Difficulties (PMLD) checklist was modified to assess postmigration stresses relevant to the experiences of West Papuan refugees in Australia over the past 12 months.12 The PMLD provides a summary score of total living difficulties (sum of items each scored 1 if causing severe or very severe stress).

The Kessler Psychological Distress Scale (K10) is a self-reported measure of psychological distress used extensively across countries, and provides a proxy index of depression and general mental disorder.13,14 We applied the established thresholds of mild (20–24), moderate (25–29) and severe distress (> 30) to provide gradations of symptoms within the community.

We applied an index of days out of role as a measure of disability, based on the number of days, out of the past 30 days, in which health-related problems prevented participants from conducting their usual daily activities.15

Procedure

The quantitative measures were applied across the whole sample. Qualitative data were collected in two phases. Phase 1, in the North Qld group, included in-depth open-ended interviews focusing on experiences before, during and after migration. Phase 1 also explored indigenous concepts and descriptions of idioms of distress reported elsewhere.6 From Phase 1 data, we derived themes relevant to the stressors and traumas experienced, which formed the basis of a semi-structured interview used in Phase 2 with West Papuans living in Melbourne.

Interviews were undertaken by West Papuan or Australian members of the research team. Australian interviewers not fluent in Bahasa Indonesia worked in parallel with West Papuan collaborators acting as translators. Participants were interviewed in their homes or at other private locations. Interviews extended up to 2 hours and included short breaks. Consent was obtained in accordance with ethics clearance from James Cook University, where the first author was employed at the beginning of the project.

Statistical analyses

We provide descriptive data (counts, means, SD) for premigration (human rights-related) traumas, postmigration stresses and measures of mental health. Pearson correlation coefficients are reported for associations between mental health indices and days out of role. Statistical analyses were undertaken using IBM SPSS Statistics version 20.

Mixed-methods data analysis

NVivo version 9 (QSR International) was used to derive metathemes and subthemes from the qualitative data to illustrate the interaction of stresses and traumas with mental health symptoms.16–18 All data were collected and recorded systematically, with triangulation of results achieved by cross-verification of findings across research methods (qualitative interviews, quantitative measures), thereby providing additional validity for the findings.19

Results

Human rights violations and
other PTEs

Most of the West Papuan refugees (40/44) reported experiencing one or more categories of PTEs relating to their lives in West Papua (Box). In order of prevalence, the PTEs reported included family members being sick and unable to access health care (40/44), lack of food or water (39/44), personally being sick and unable to access health care (38/44), forced separation from family members (35/44), witnessing the murder of a family member or friend (34/44), lack of shelter (31/44) disappearance of family members (33/44), having one’s house intentionally burnt down by Indonesian militia or police (29/44), physical assault (27/44) experiencing a combat situation (26/44) and torture (21/44).

Describing the range and contemporary relevance of these traumas, a participant said:

People don’t know much about West Papua, there is a lack of interest in West Papuan issues. They don’t know about 10 to 15 students who support West Papuan independence every week being taken to prison to be tortured.

and

. . . they [Indonesian military] take over my country, kill, rape, and steal our property like gold, oil, timber, copper and fish.

Postmigration living difficulties

The most prevalent stresses faced by West Papuan refugees while living in Australia were associated with unresolved conflict in their homeland, including forced separation from family members residing in the home country (43/44), associated worries about the safety and wellbeing of family members (43/44), and not being able to visit their homeland in times of emergency because of ongoing conflict (41/44) (Box). Sharing the experience of most, a participant explained:

I feel sad and grieving because of the loss of land, separation from family, and the abuse of Papuans, I feel helpless, I can’t help my family back home, and we have lost everything.

PTSD symptoms

Most of the participants (26/44) reached the lower threshold for PTSD symptoms of 2.0, and 13 participants met the clinical threshold of 2.5. Commonly reported symptoms of post-traumatic stress included repeated nightmares and memories associated with traumatic experiences, flashbacks, periods of memory impairment, persistent avoidance of triggers of trauma events, reduced emotional responsiveness and social detachment, as well as a heightened state of arousal.

Reminders from the homeland triggered intrusive memories of past trauma:

I get very frightened when I hear news from home like family member pass away or Indonesian army killed one of my family members which reminded me of what happened before . . .

K10 results

According to the conventional cut-off scores for the K10, 21 participants had mild psychological distress, 11 had moderate psychological distress, and 14 had severe psychological distress. Over 30 participants reported prominent symptoms indicative of depression and anxiety, including feeling everything was an effort, that nothing could cheer them up, and feeling restless and fidgety. Explaining the significance of the trauma and loss to ongoing symptoms of distress, a participant said:

I feel sad because of what Indonesian military has done in WP [West Papua] . . . because my family passed away back home; because I can’t help my family back home; because people lost everything back home.

Disability

PTSD symptoms (mean, 2.05; SD, 0.62) were associated with the mean days out of role in the past month (mean, 3.71; SD, 5.76; Pearson correlation coefficient [r] = 0.375, P = 0.01), with psychological distress showing a trend in the same direction (mean, 24.25; SD, 8.90; r = 0.229, P = 0.15).

Discussion

Our study is the first mental health inquiry worldwide to document reported human rights violations and other PTEs and stressors experienced in the homeland, difficulties after migration, and trauma-related mental symptoms among refugees from West Papua. The data indicate that West Papuans report exposure to a wide array of human rights violations and other traumatic events in their home country, comparable to the experiences of other refugee groups exposed to conditions of mass conflict.20,21 Commonly reported traumas in our survey included lack of food or water, witnessing the murder of a family member or friend, having family members disappear, houses being intentionally burnt down and being involved in combat. Being unable to access medical care for oneself or one’s family in an emergency was the most widely experienced stressor, endorsing other reports identifying the problem of access to adequate health services for the indigenous people of West Papua.2–4

Importantly, refugees reported that family, friends and others were being exposed to similar traumas in their contemporary lives in West Papua. It is noteworthy that 48% of our sample reported being tortured, a form of abuse that is particularly potent in generating severe and persisting PTSD.20 The rate of exposure to torture is notable, given that an extensive systematic review of refugee research has shown that 21% of participants in 84 epidemiological surveys among refugees and conflict-affected societies worldwide reported being subjected to this form of abuse.20

There is accruing evidence that postmigration stressors can interfere with successful settlement among refugees.22,23 It was notable that the most highly reported postmigration stresses related to ongoing conflict in the homeland and anxieties about the safety and security of family remaining behind. Many refugees indicated that they would not be able to overcome their state of distress until the conflict in their home country ended and they were assured of the safety of their families.

The prevalence of symptoms of PTSD and psychological distress are comparable to those reported by refugee and conflict-affected populations in many other countries worldwide.20 Nevertheless, a number of refugees indicated that in spite of their symptoms, they made efforts to continue working and interacting socially with their compatriots. This commitment to maintain their level of functioning may account in part for the relatively low correlation between mental health symptoms and the days-out-of-role index.

The limitations of the study are the small sample size and issues relating to its representativeness. Privacy considerations limited us in gathering sensitive data such as the actual dates of arrival of refugees in Australia. The sample was restricted to refugees in Australia, so the prevalence of trauma and mental health symptoms cannot be generalised to the whole population of West Papua. We do not know if non-participants differed from respondents on key indices of trauma and mental health, a potential source of bias. In addition, we cannot dismiss the possibility of reporting bias given that several of the participants had taken a stand against the occupation of West Papua. We did not recalibrate the HTQ or K10 to norms for this culture, so international cut-off scores should be regarded as only broadly indicative of incremental levels of distress.

In summary, our findings shed light on the extent and nature of reported human rights violations and other traumatic events and consequent mental distress among West Papuan refugees resident in Australia. The results are particularly concerning given recent media reports that there are ongoing human rights violations occurring in a territory that is one of Australia’s closest neighbours.5 The data will be of value in alerting clinicians treating West Papuan refugees to underlying trauma and mental distress in this population that may not be readily revealed. More broadly, our research may provide impetus to initiating further and larger studies investigating the range of traumas and mental health problems of West Papuans both inside the territory and living as refugees in other countries.

Reported frequency of potentially traumatic events (PTEs) and severe traumas before migration, and living difficulties after migration

	n
Premigration PTEs

Family members sick and unable to get medical treatment	40
Lack of food and water	39
Lack of access to medical treatment	38
Forced separation from family members	35
Witnessing murder of family or friend	34
Disappearance of family member	33
Lack of shelter	31
House burnt down by Indonesian militia	29
Physical assault	27
Experience of combat situation	26
Witnessing murder of stranger	25
Torture	21
Imprisonment	10
Serious injury	9
Postmigration living difficulties
Separation from family in homeland	43
Worries about family in homeland	43
Unable to return home during emergency because of ongoing conflict	41
Communication difficulties	35
Poor access to favourite foods	26
Discrimination	24
Loneliness and boredom	21
Fears of repatriation	19
Difficulties in employment	18
Isolation	18
Poverty	16
Difficult work conditions	14
Delays in processing asylum application	13
Limited work rights	8
Difficulties in interviews with immigration officials	7
Limited government assistance in welfare	7
Worries about lack of access to treatment for health-related problems	6
Poor access to dental care	6
Poor access to counselling services	5
Being in detention	3
Conflict with immigration authorities	3
Poor access to long-term medical care	3
Poor access to emergency medical care	2
Limited support from charities or non-government organisations	1