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

Subacute care funding in the firing line

Recent enhancements to subacute care services are threatened due to the uncertain future of federal–state funding agreements

The term “subacute” was coined for use in Australia 21 years ago to describe health care where the patient’s need for care is driven predominantly by his or her functional status rather than principal diagnosis.1 Subacute care includes rehabilitation, palliative care, geriatric evaluation and management, and psychogeriatrics. Rehabilitation represents more than 50% of all subacute hospital care in Australia.2

The past two decades have seen slow growth in subacute care. However, the public sector was given substantial momentum in recent years through two National Partnership Agreements (NPAs) between the federal government and the state and territory governments, negotiated by the Council of Australian Governments (COAG) — the Hospital and Health Workforce Reform (HHWR) NPA and the Improving Public Hospital Services (IPHS) NPA. Both NPAs aimed to “improve efficiency and capacity in public hospitals”.3

The 5-year HHWR NPA was signed in 2008 and, of the total funding of $3042 million negotiated under this agreement, $1383 million was provided by the federal government to the states and territories. This consisted of $133.41 million for activity-based funding (ABF) infrastructure, $500 million for subacute services, and $750 million for “taking the pressure off public hospitals” by addressing waiting lists and times.3 The $500 million allocated for subacute services was provided in one instalment, with its distribution to all states and territories based on age-weighted population.

The IPHS NPA was signed in 2011.4 It consisted of total funding of $3373 million, including up to $1623 million for new subacute beds. This was allocated over 4 financial years — $233.6 million in 2010–11, $317.6 million in 2011–12, $446.5 million in 2012–13, and $625.5 million in 2013–14.

Box 1 shows that activity increases in subacute services attributable to the HHWR NPA occurred in all states and territories. More than 600 000 extra bed-day equivalents (inpatient days plus ambulatory care equivalents) were provided in 2011–12 than in the baseline year of 2007–08, representing 25.9% growth across Australia.5 The target in the HHWR agreement was a 5% increase in each of the 4 years — this was exceeded by the end of Year 3 (2011–12).

The 2009 report of the National Health and Hospitals Reform Commission (NHHRC) stated that:

There is … an urgent need for substantial investment in, and expansion of, sub-acute services — the ‘missing link’ in care — including a major capital boost to build the facilities required.

It also recommended the introduction of clear targets to increase the provision of subacute services, and stated that “Incentive funding under the National Partnership Payments could be used to drive this expansion in sub-acute services”.6

The NHHRC recommended investment beyond the targeted 5% increase per year under the HHWR agreement, recognising that much of this 5% increase would only account for extra demand associated with population ageing and growth. Indeed, as shown in Box 1, most states and territories have delivered much greater than 5% growth, with South Australia and Queensland reporting increases of 50% and 43%, respectively.5

The HHWR agreement made provision for a review of progress “in respect of achieving the agreed outcomes”, to occur in July 2011.3 However, apart from the annual reports of the states and territories describing the services developed under the NPA, and the reporting of activity measures, there is no evidence that any review of the NPA on a national basis has occurred. Further, although the NPA specifically describes the role of the federal government as including provision of funding support for “research into best practice models of care” and funding and providing “national coordination of the initiative [and] monitor[ing] performance”,3 no provision was made for funding to continue beyond the term of the NPA, nor for a formal evaluation of outcomes at its conclusion. Consequently, the effectiveness of the developed services cannot be fully assessed because they have not been subjected to rigorous evaluation. Although formal outcomes cannot be reported, examples of rehabilitation programs funded by the HHWR agreement are given in Box 2.

In contrast, the IPHS agreement specifies that an evaluation framework will be developed and that a review of the agreement will be completed, with a decision by COAG by December 20134 — although no details have been released to date.

These two agreements have provided public hospitals with unprecedented opportunities to develop new inpatient and ambulatory rehabilitation services and to expand existing services. These new and expanded services have dealt with previously identified deficiencies, especially the need for early rehabilitation in the acute care setting and increasing the intensity of therapy within rehabilitation settings.8–10 Public hospitals have been able to develop better rehabilitation capital infrastructure and better meet the growing need for rehabilitation, particularly among the ageing population. Between them, these two agreements represented a turning point in the development of public sector rehabilitation services across the country.

There is growing international evidence showing improved patient outcomes from the provision of more intense therapy (ie, therapy “dose”) in the rehabilitation setting, as well as showing improved efficiency.8,9,11 In the United States, where therapy of 3 hours per day for a minimum of 5 days per week is mandated in inpatient rehabilitation,9 length of stay for patients undergoing stroke rehabilitation is shorter, and the rate of attainment of functional gain is higher, than in Australia.1 2

More intense therapy should result in more efficient use of rehabilitation beds if length of stay can be reduced as a result. This is because the cost of providing extra therapy is relatively low compared with the high fixed costs of running an inpatient bed.

With the HHWR NPA ending on 30 June 2013, many of these new and expanded rehabilitation programs will cease. Staff are already seeking alternative employment, and programs are beginning to wind down. The fact that many health services across the country will now be closing down rehabilitation and other subacute initiatives that were funded under this NPA suggests a lack of planning by the federal, state and territory governments for what would happen after the HHWR NPA ends.

Development of subacute care must continue if Australia is to keep pressure off the acute hospital system and deal effectively with population ageing. However, in our opinion, the lack of requirements for rigorous evaluation of services developed with HHWR NPA funding, which could have provided a basis for ongoing funding if the requirements were met, is not justifiable.

Even if these programs demonstrate system-wide efficiency gains, this does not free up resources; rather, it increases capacity. As such, it would be difficult for state and territory governments to continue to fund successful programs out of existing resources, unless other programs were cut. The new ABF arrangements are not sufficient to pick up where the HHWR agreement has left off, not least because federal growth funding does not begin until 2014–15.1 3

At the system level, the sudden closure of rehabilitation and other subacute services will have flow-on effects to the acute care system, as it will increasingly have to manage patients who would otherwise have been referred to rehabilitation. The net effect is likely to be that the length of stay in acute care will increase, along with bed occupancy and waiting times.

1 Reported increase in subacute care services under the National Partnership Agreement on Hospital and Health Workforce Reform, by state and territory*

Jurisdiction	Services in 2007–08 (baseline)	Services in 2011–12	Increase (%) in 2011–12 compared with baseline

New South Wales	679 048	813 283	134 235 (19.8%)
Victoria	786 648	933 930	147 282 (18.7%)
Queensland	290 368	414 531	124 163 (42.8%)
South Australia	197 583	296 604	99 021 (50.1%)
Western Australia	511 498	658 781	147 283 (28.8%)
Tasmania	46 815	56 243	9 428 (20.1%)
Australian Capital Territory	62 745	68 038	5 293 (8.4%)
Northern Territory	11 227	14 261	3 034 (27.0%)
All	2 585 932	3 255 671	669 739 (25.9%)

* Compiled from the individual state and territory government reports submitted to the Steering Committee for the Review of Government Service Provision (for Schedule C of the National Partnership Agreement on Hospital and Health Workforce Reform).5

2 Examples of rehabilitation programs funded by the National Partnership Agreement on Hospital and Health Workforce Reform

At St Vincent’s Hospital in Sydney, existing services were enhanced and two new services introduced: rehabilitation in the home, and a mobile rehabilitation team. The latter provides rehabilitation within 3 days of acute admission in parallel with acute care. The program targets young disabled patients for whom there are few community services. Hospital length of stay was reduced and patients avoided inpatient rehabilitation, instead accessing ambulatory programs after discharge.
In South Australia, large investments were made in home and day rehabilitation services, including substantial investments in Whyalla, Mt Gambier and Berri. The Women’s and Children’s Hospital in Adelaide is now able to provide multidisciplinary community services, allowing access to community-based rehabilitation for 50 children who have had complex surgery, as well as the establishment of a state-wide hip surveillance program for children with cerebral palsy.
The South Eastern Sydney Local Health District (SESLHD), one of the largest health districts in New South Wales, focused on increasing intensity of therapy in inpatient rehabilitation and developed acute rehabilitation teams in acute hospitals. The SESLHD has evaluated the outcomes of its enhanced rehabilitation services and reports a 13% reduction in the average length of stay, improved speed of functional gain, and more than 130 avoided rehabilitation admissions annually.7

Traditional healers help close the gap

IN 2009, THE ROYAL Australian and New Zealand College of Psychiatrists awarded the Mark Sheldon Prize for Indigenous mental health to ngangkari (traditional healers) Andy Tjilari and Rupert Langkatjukur Peter. The two were further honoured in 2011 by the World Council for Psychotherapy with the Sigmund Freud Award (bestowed by the City of Vienna, Austria). The awards recognised their distinguished contributions in mental health to the Aboriginal communities of Central Australia.

Traditional healers of Central Australia celebrates the important work done by these and other ngangkari. It is a rich compilation of stories told by the ngangkari themselves along with artwork and photographs of Central Australia.The tales told by a number of male and female ngangkari reflect their life and cultural experience with respect to their careers as traditional healers within their Aboriginal family and community. The book includes a general discussion of the work of the ngangkari as well as specifics on how they approach topics such as grief, death and dying, substance abuse, mental illness, and the way they work with conventional health services. The services the ngangkari offer to these communities are often conducted in coordination with formal clinical mental health service provision.

This beautiful and insightful work will give the interested reader a window into a cultural experience of healing that is a continuing vital element of the health of the Aboriginal communities in Central Australia. In the ongoing efforts to Closing the Gap, this book is a reminder that solutions to health may be assisted through the wisdom of local people and communities in coordination with the “evidence” that is so prominent in the discussions about health service delivery today.

It’s time to examine the status of our undergraduate mental health curricula

To the Editor: Review of undergraduate mental health education is timely, given the growing disease burden of mental disorders and the need to better equip doctors for their central role in treatment. Curricula should prepare all doctors with competencies in recognising and treating mental health problems,1 because these occur frequently in patients across all branches of medicine, leading to poorer outcomes.2 Curricula should also prepare a minority of doctors for specialist psychiatry training.1

Review of practices is particularly pressing in Australia, where current medical school expansion provides critical opportunities to influence many training doctors’ competencies. Despite this expansion, published reviews and curriculum models are notably lacking. Australian medical schools, unlike those of other countries, have yet to agree on a core curriculum in undergraduate psychiatry, and delivery, content and assessment vary widely.3 These factors increase the probability of isolated curriculum development and inefficiency in preparing doctors with core skills. The Royal Australian and New Zealand College of Psychiatrists has called for greater collaboration across medical educators to develop core psychiatry curricula.1

A strategic curriculum requires learning outcomes that move beyond traditional psychiatry competencies in mental status examination, to include preventive health care as well as key attitudes, knowledge and skills needed to equip future doctors to treat mental illness. Chronic challenges also require consideration — these include difficulty in recruiting psychiatrists, lack of clinicians for teaching, and stigma towards psychiatry as a specialty and towards those with mental disorders. High-quality, multidisciplinary, multi-setting teaching may boost teaching resources, expose students to first-line psychological interventions and sensitise them to early-stage presentations. Additionally, with current concerns over the mental health of doctors, medical education provides opportunities to better equip doctors to take care of their own wellbeing.

There are calls to allocate a third of medical school curriculum time to teaching about brain and mental disorders, proportional to their disease burden.4,5 We estimate that the current proportion in Australia is far lower. In 1999, an Australian study found inconsistency among medical schools, and an overall average of 416 hours psychiatry teaching.6 We have been unable to locate published figures on the percentage of total teaching hours allocated to psychiatry in Australian medical schools. More recent, and proportional, figures are needed.

Current challenges are to achieve consensus on core mental health curricula across Australian medical schools, and to ensure adequate curriculum time to enable updated learning outcomes. Publishing and critiquing our approaches to curriculum delivery will facilitate reform.

Improved prognosis for borderline personality disorder

New treatment guidelines outline specific communication strategies that work

Until recently, borderline personality disorder (BPD) was considered to be a chronic ongoing condition with a poor prognosis and no effective treatment. However, the tide of research and clinical opinion has turned, and the prognosis for this disorder is now considered improved for most patients if one of a number of effective evidence-based treatments is implemented.1 On 15 March 2013, the National Health and Medical Research Council (NHMRC) issued the Clinical practice guideline for the management of borderline personality disorder, which outlines best practice.2

BPD was first described in 1938 when referring to a recognised group of people who were thought to be on the “borderline” between neurosis (depression and anxiety) and psychosis (schizophrenia).3 The term “borderline personality disorder” became accepted medical terminology in 1980 with its inclusion in the third edition of the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders.2 The prevalence of BPD in the community is between 1% and 4%, but at least one-quarter of all mental health presentations to emergency departments or inpatient mental health units are people with a personality disorder.4

People with BPD may try to avoid abandonment by others, and they may have intense and unstable relationships, and feelings of insecurity and emptiness. They have difficulty with emotional regulation, manifesting as low mood, sudden anger, irritability, detachment and impulsivity in activities such as using drugs or engaging in risky sexual activity. The illness may include both anxious and labile mood, along with occasional more severe components such as transient stress-related psychotic-like symptoms, including paranoid delusions or hallucinations.

BPD is currently understood to be caused by a combination of biological factors (eg, genetic interpersonal hypersensitivity) and early environmental influences (eg, adverse childhood experiences).5 It cannot be said that BPD only derives from post-traumatic stress.6 Therefore, in view of current understanding, it is not “the person’s fault” or a result of “personal weakness” or “being manipulative” — labels that are sometimes prompted by the negative reactions of health care workers to people with the condition.

Clinicians are familiar with the problem of young people who self-harm, or who present as needy and impulsive, and who have a history of presenting to emergency departments in crisis. Managing these people can be a challenge, in part because they often have difficulty describing themselves.7,8 Such people can present sometimes as aggressive, entitled and disinhibited, but at other times as needy, timid and compliant. It is important to recognise that self-harm does not indicate BPD if it is the only presenting problem.

Psychological therapies are the treatment of choice. Over 25 randomised controlled trials have now demonstrated the benefits of specific types of psychotherapy that are known to be effective, such as dialectical behavioural therapy, mentalisation-based therapy, and transference-focused therapy.3 An important factor that is common to all effective therapies is the use of a specific form of communication focused on discussing current relationship difficulties and methods of problem solving with patients, so that they are able to choose healthier relationships and maintain study and work.9 Clinicians should avoid discussing past traumas in the early stages of treatment, as this has rarely been found to be helpful and usually worsens patients’ mental health and increases their risk of suicidality. Unlike depression, anxiety or schizophrenia, there are currently no approved medications that are “on label” indicated for the disorder, with Recommendation 11 of the NHMRC guidelines stating that “medicines should not be used as primary therapy for BPD, because they have only modest and inconsistent effects, and do not change the nature and course of the disorder”.2

Effective treatments aim to strengthen self-esteem, and use the therapist–patient or doctor–patient relationship to provide a “safe place” for the patient to discuss alternatives to destructive behaviour and relationship insecurities, with an unhurried, step-by-step “here and now” approach to improve daily functioning. One of the principles of the NHMRC guidelines is that to be effective, doctors should try to “act consistently and thoughtfully . . . to make sure the person stays involved in finding solutions to their problems, even during a crisis”.2,10 The availability of resources to help doctors, patients and their families and carers to understand and better respond to the condition is important; the NSW Health Project Air Strategy for Personality Disorders10 (www.projectairstrategy.org) referred to in the NHMRC guidelines is an example of such resources being made available in one place. People who suffer from the disorder almost always experience receiving a diagnosis as helpful, because it allows them and their families to understand that this is a recognised disorder and that there are good psychotherapies that provide hope.

A major focus of effective treatment is to support families, partners and carers of people with BPD.2 Because of the interpersonal nature of the disorder, families often feel burdened by their relative’s condition, and also need to learn effective ways to communicate and cope with living with a person with the illness. The doctor or therapist can encourage families to stay connected to the person with BPD, even though this may be stressful.10 Doctors and therapists have an important role in supporting both patients and families to get the help they need, and in providing education about the latest developments in our understanding of the disorder. Most of all, doctors and therapists are in a powerful position to give hope to those with the diagnosis, and to work to overcome the stigma and prejudice surrounding BPD. This is particularly important, as people with the condition are now known to respond well to new treatments.

Challenges to a more open discussion of suicide

The value and meaning of public discussion of suicide requires broader consideration

Recently, some commentators have called for a more open public discussion of suicide to promote community awareness of this important issue.1 The rationale for this is based on international research that advocates a multilevel approach to suicide prevention, combining mental health care with public awareness campaigns and gatekeeper training for those in close contact with at-risk groups.2 While this is intuitively appealing, the problem is that, as well as being a public health problem, suicide is inscribed with deeply felt moral, religious and cultural meaning that will influence any discussion, and that the potential outcomes of public discussion are poorly understood.

Unfortunately, the debate about the public discussion of suicide has often failed to go beyond consideration of the risks of such a “dangerous” discourse and often conflates public discussion of suicide with media reporting of suicidal events. Indeed, there is very little research that investigates public discussion outside this context.3 Most existing research relates more specifically to the domain of news and information media,3 and the debate in Australia has often centred on media guidelines for the responsible reporting of suicide.1,4 Many of those who have contributed to debates about public discussion of suicide have noted that increased media reporting may have a detrimental effect and lead to increased suicidal behaviour in vulnerable, at-risk populations.4 In support of such concerns, they cite a strong body of research that demonstrates a correlation between media reporting of suicide and actual suicide. But while such research indicates the dangers of irresponsible or insensitive reporting of suicidal events, there is also a small body of literature that shows how media reporting of suicide may operate positively and reduce the risk of suicide.5,6

However, media representations of suicide and community discussions of suicide are two distinct issues. Many different kinds of conversations are possible (in terms of their focus, format, setting and target group).3 For example, it is possible to discuss prevention, intervention and postvention (for the bereaved); it is possible to have discussions online, in the workplace, within families and in educational settings; and it is possible to have one-on-one discussions, group discussions and community discussions.3 It is important, therefore, to recognise these differences and the potentially different impacts and implications that these might have.3

Most of the research on discussion of suicide focuses on individual-level interactions. For example, literature reviews conducted in New Zealand7 and Canada8 focus on the question of whether asking about an individual’s suicidal ideation or intent increases the risk of that person either attempting or completing suicide — with neither study finding evidence to support or refute this claim. A review of the literature conducted on behalf of Choose Life, Scotland’s national action plan to reduce suicide, adopted a broader approach, investigating individual-level discussions as well as general public education and awareness campaigns.9 Like the New Zealand and Canadian studies, the researchers found no evidence that encouraging people to talk about suicide had any positive or negative impacts on primary outcomes of decreasing suicidal acts or higher levels of treatment seeking. The same was true of public education and awareness campaigns, although there was some evidence to suggest that public awareness campaigns may increase awareness of suicide and available resources.9

The failure of research to demonstrate many measurable changes in complex social behaviour after health promotion campaigns is, in many ways, not surprising. There are intellectual and emotional barriers to discussing things that are painful, threatening and complex,10 and it is unrealistic to expect significant social change within a short period of time.

Limiting the outcomes of research to suicide rates and the number of people seeking treatment, as generally happens, is also problematic: these are not the only measures of success. Other meaningful outcomes of facilitated public discourse may include, for example, increased public tolerance of mental illness, reduction in discrimination and stigmatisation of both people who have attempted suicide and those with mental illness, increased awareness of the risk factors for suicide and increased community cohesion more generally. For suicide is not simply a medical “problem”, or even a public health “problem” — it is a complex cultural and moral concern that is deeply embedded in social and historical narratives and is unlikely to be greatly altered by any form of health intervention.

While recent efforts by the New South Wales Ministry of Health to develop evidence-based guidelines for community discussion about suicide are welcome,3 we suggest that such approaches continue to confuse clinical with public discourse, persistently focus on the risk of public representation of suicide, and misapprehend the scope and benefit of public discussion.

The cultural conversation required to address deep-seated issues of stigma, blame and social responsibility, as well as morally unsettling questions about the particular nature of the hopelessness and helplessness that compels individuals to contemplate suicide, is not easy to articulate and less easy to measure. And, like discussions of gender roles or racism with which we believe public discussion of suicide may be more suitably compared, any social or cultural transformation may take many years to achieve. Nor can such discussions ever be completely free of risk. Talking about grief, fear, loss, isolation and destruction will always be challenging and, irrespective of how sensitively it is done, some will inevitably find that such discussions do not reduce these feelings but amplify them. We can try, as best we can, to respond to these feelings, thoughts and anxieties when they arise, but we cannot imagine their possibility out of existence.

While medicalisation of suicide has provided secular ways to understand suicide and has enabled the development of therapies and programs to prevent its occurrence and to assist at-risk individuals and those bereaved by suicide, it has also led to a narrowing of public discussion. A genuinely open discussion of suicide must be a wide discussion — not just a medical or public health discussion, but a social, cultural, moral, political and even religious discussion.

Public conversations about suicide are happening — and have always happened. Rather than seek to suppress or control such discussions, we need to understand that medicine does not have all the answers to such complex problems and to trust in people’s capacity to reflect on even the most difficult issues. It is time for us to have a much richer, more honest and more open public discussion about suicide.

Suicide prevention: signposts for a new approach

Suicide prevention can be improved by implementing effective interventions, optimising public health strategies and prioritising innovation

Suicide has overtaken motor vehicle accidents as the leading cause of death among young adults aged 15–44 years in Australia. In 2011, 410 Australians aged 25–34 years took their own lives, with a total of 2273 deaths from suicide reported across all age groups.1 In terms of funding allocations, the Australian Government’s investment in the National Suicide Prevention Program (NSPP) more than doubled from $8.6 million in the financial year 2005–06 to $23.8 million in the financial year 2010–11.2 However, it is uncertain whether specific activities funded under this and similar schemes have reduced suicide rates. One study reported that Australia’s efforts to improve youth suicide prevention through locally targeted suicide prevention activities under the National Youth Suicide Prevention Strategy were unsuccessful in the period 1995–2002.3 Recent studies highlighting the limitations of individual risk assessments have contributed to a sense of nihilism. In suicide prevention, there is an acute mismatch between evidence-based interventions and clinical and population-based practice. The evidence of effectiveness is very limited,4 while the need to act is compelling.

Given this picture, a new approach must be considered — one that optimises implementing the few public health interventions that are backed by strong research evidence, as well as testing innovative strategies. The following six recommendations may help focus a new suicide prevention policy.

Recommendation 1: implement known effective interventions

A first step in reducing suicide rates is to implement interventions that are known to work. The three public health interventions with the strongest evidence base in reducing suicide are gatekeeper training, reduction in access to means, and good-quality effective mental health care.4 Gatekeeper training involves teaching individuals such as health care professionals, army and air force officers, school staff and youth workers, who are primary points of contact for high-risk populations, to effectively identify, assess and manage risk of suicidality and provide referral to treatment if necessary. Reduction in access to means of suicide includes increased restriction of access to firearms, domestic gas and pesticides, reduced pack size of analgesics and physical barriers at suicide sites. Good-quality mental health care, such as training for general practitioners to identify depression, combined with collaborative care, quality assurance programs and nurse management, is effective in reducing depression. A descriptive, cross-sectional before-and-after analysis of national United Kingdom suicide data from 1997 to 2006 provided evidence supporting the utility of combining various prevention strategies within mental health services.5 In 2005, for example, services that implemented seven to nine out of a total of nine recommendations had suicide rates of 10.50 per 10 000 patients, while services that implemented zero to six recommendations had rates of 13.45 per 10 000 patients.

However, even as a first step in reducing suicide in Australia, the value of these strategies is limited. Most evaluations of community gatekeeper programs report improved knowledge about suicide and increased self-efficacy in gatekeepers (ie, gatekeeper trainees’ self-reported perceptions and appraisal of their own ability, competence and skills to successfully identify and assess suicidal risk and refer to appropriate services if necessary). However, gatekeeper training has established effectiveness for suicidal ideation or suicide attempts only in certain medical or institutional contexts, such primary care or the military.4 Community gatekeeper training, which is currently funded under the NSPP, has not been subject to rigorous empirical tests for core suicide outcomes. Means restriction is influential where access to suicide methods (such as pesticides) is prevalent. However, in Australia, efforts to restrict means are already in place. Improved mental health care will only be effective for those in contact with mental health services, estimated to be less than half of those who attempt suicide,6 and for only one-third (34.9%) of those with any mental disorder over a 12-month period.7 Health reform and investment to increase early access to headspace: the National Youth Mental Health Foundation and e-health services for young people may increase rates of help-seeking. However, effectiveness research is very limited — of the “effective” public health interventions for suicide described above, only gatekeeper training has been subjected to a single randomised controlled trial (RCT).4,8 In contrast, a 2012 paper reported more than 30 RCTs of non-pharmacological interventions to prevent depression,9 and a 2005 retrospective evaluation reviewed 477 RCTs of selective serotonin reuptake inhibitors to explore whether antidepressants increased risk of suicide.10

Recommendation 2: model for best
“bang for buck”

To gain maximum benefit from the available suicide prevention funds, we need to determine the impact, circumstances and audience of targeted or universal population-based approaches. Targeted approaches aim to lower risk in groups with higher risk of suicide, such as Indigenous youth, lesbian, gay, bisexual and transgender people, and older men,1 or those with higher risk of suicide attempts, such as young women. A broader population-based approach aims to lower the overall level of risk factors and behaviours in the population, thereby reducing the number in the “high risk” tail of the distribution.11 Modelling is required to determine the extent to which targeted or population approaches will deliver the best “bang for buck” in reducing suicide attempts, risk and burden on the health system, and in facilitating the uptake of specific prevention activities and health services. The economic costs of suicide need to be assessed more broadly.

Recommendation 3: evaluate if simpler interventions are as effective as more
complex ones

Internationally, the trend is to combine multiple elements into broader programs, such as the European Alliance Against Depression (EAAD), which involves 20 international partners representing 18 European countries, Optimizing Suicide Prevention Programs and their Implementation in Europe (OSPI Europe)12 and the “Don’t hide it. Talk about it” campaign, undertaken in conjunction with the Choose Life training program in Scotland. For most of these programs, we are unable to determine whether a single element, a combination of elements or the sheer intensity of the cumulative effect of the approach is the key to any potential impact. The downside of complex interventions is that costs rise and translation to practice requires intense effort, so there is urgency about evaluating each of the elements separately.

Recommendation 4: take advantage of opportunities early in the suicide prevention chain

Risk models indicate that suicide risk arises from depression, hopelessness and capability which, in combination with proximal and immediate triggers, lead to suicidal acts. Systematic intervention early in this “chain” is important. If depression is a necessary (albeit not sufficient) condition and prominent risk factor for suicide, intervening early for depression is critical. From a population perspective, schools are an ideal environment in which to deliver interventions that may lower the risk of suicide later. Australian researchers have shown that “upstream” modification of depression and alcohol misuse is achievable.13 However, these upstream interventions are not systematically implemented. Postvention programs have been newly introduced into high schools to deal with the fallout of an attempted suicide or a suicide, without support from RCTs. These may be useful, although this remains to be seen. The point is that our strategy needs to put more emphasis on prevention in those with risk, where evidence is relatively strong. Put simply, the hospital emergency department should not be the first point of intervention in the suicide prevention chain.

Recommendation 5: offer suicide programs directly through the internet to those at risk and not in contact with mental health services

There is promising evidence that online programs are effective and able to reach many who do not seek traditional health services.14

Recommendation 6: develop clear prevention messages and practices to improve suicide literacy

Media guidelines promote responsible professional coverage and caution against the possibility of social contagion. This social transmission of suicidal behaviour through social media needs immediate attention, particularly in young people, given the potential for harm. However, there is recognition that the issue of suicide must be discussed to improve understanding and, hopefully, to lower risk. The National Mental Health Commission recently commissioned research to explore Australians’ attitudes to suicide. The report concluded that since “simple advice can help stem the tide of some diseases”, a public campaign around suicide was warranted.15 Recent Australian research uncovered similar findings. Literacy levels around suicide are low, and people do not know what constitutes the triggers to suicide, or how to identify suicide risk in their friends and family.16

There may be overall harm in shutting down talk about suicide if this strategy inhibits a more integrated community and medical response to identifying those at risk. The information needs of the community need to be mapped out, and tailored messages should be trialled through community and expert consultation. We reiterate that before a campaign around suicide literacy and stigma is launched, the proposed campaign messages and dissemination practices should be tested using controlled experiments to determine if they raise appropriate awareness.

A new suicide prevention strategy

Suicide is a complex behaviour, and likely to have different causes and triggers depending on context and individual characteristics (eg, Indigenous and remote communities, culturally and linguistically diverse groups, people in prisons and those with a psychiatric disorder). However, suicide rates will not lower substantially if we continue a scattergun approach to funding diverse projects, failing to prioritise interventions with proven effectiveness, ignoring the opportunity to optimise a broader population health approach, or failing to fund innovation using new technologies. We must invest in new strategies with demonstrated impact to avoid further loss of life.

Reviewing the revisions: what are the Australian Bureau of Statistics suicide figures really telling us?

To the Editor: For several years, the Australian Bureau of Statistics (ABS) has cautioned data users of likely underreporting of suicide statistics due to delays in coronial processes and (since 2006) exclusive reliance on the National Coronial Information System, which often contains incomplete information on cause of death.1 In 2009, the ABS introduced data revision processes that allowed additional information received to be added in two rounds of revisions at 12 and 24 months after the initial processing of coroner-certified deaths. This assisted coders in assigning more specific causes of death, thereby replacing the previous default “accident” category for ambiguous cases.

These changes have increased reported suicide rates, predominantly due to parallel reductions in deaths assigned to “Other ill-defined and unspecified causes of mortality” (International Classification of Diseases, 10th revision [ICD-10] code R99), which have more than halved, and “Event of undetermined intent” (ICD-10 codes Y10–Y34, Y87.2), which have reduced by around two-thirds.2,3 As these categories often represent “holding bays” for cases with insufficient information at initial processing, such decreases would be expected after the revisions. However, the figures remained inflated: in the 2006–2009 data (which have undergone two rounds of revision), ill defined causes of death remained more than double the levels recorded during the 1990s, and deaths of undetermined intent more than three times higher.3

Currently, the only reliable alternative source of suicide mortality data in Australia, albeit at the state level, is the Queensland Suicide Register (QSR). The differences between the two datasets have been detailed elsewhere.4 From 2003, the discrepancy between QSR data and ABS preliminary data on suicide grew exponentially, reaching 47.1% in 2007.4 Final revisions of ABS data from 2006 have reduced the gap to levels comparable to those seen during the 1990s and early 2000s (Box). However, the two datasets remain significantly different for 2003–2005, for which ABS data were not revised. It is reasonable to conclude that considerable numbers of suicides in these years remain misclassified.

Data users should be aware of these caveats when interpreting ABS statistics, particularly the recently announced 17% drop in suicide rate over the past decade.2 Continuous efforts to improve the reliability
and validity of suicide data are of paramount importance for developing and evaluating suicide prevention programs.

Differences in Queensland suicide rates reported by the
QSR and the ABS, 2001–2009

	Rate per 100 000
Year	QSR	ABS	Difference

2001	14.05	13.75	2.2%
2002	15.64	14.46	8.2%
2003	14.33	12.23	17.2%
2004	15.25	11.61	31.3%
2005	14.17	11.49	23.3%
2006	12.91	12.08 (F)	6.9%
2007	12.89	12.39 (F)	4.0%
2008	13.86	12.83 (F)	8.0%
2009	13.39	11.86 (F)	13.0%
QSR = Queensland Suicide Register. ABS = Australian Bureau of Statistics. F = final data after ABS revisions.

Philately and the Diagnostic and statistical manual of mental disorders

To the Editor: I was interested in the recent articles from the “Stamps of greatness” series, reprinted from past issues of the AMA Gazette, containing the memorialisation in stamps of famous historical leaders in medicine. Few readers would be likely to realise the association between the hobby of philately (the study and collection of postage stamps) itself and the development of the Diagnostic and statistical manual of mental disorders (DSM) classification of psychiatric illness.1

As an activity in itself, the hobby of philately is likely to have significant mental health benefits, such as enhancing organisational ability in a relaxed environment, as well as allowing the collector to enjoy the design and art of the stamps, and to engage intellectually with the value, geography and historical context of the stamp. However, the way in which philately applied to the development of the DSM is one of those chance moments that affect the subsequent course of history.

William Menninger, a member of a prominent United States family of psychiatrists from Kansas, was appointed to the 4th Service Command of the US Army during the Second World War after the sudden death of the head of the neuropsychiatric division. Menninger commented that on his appointment, his commanding general, Major General Henning, had little use for psychiatrists. However, when Menninger made his first formal call on Major General Henning, he found him working on his stamp collection and was able to develop immediate rapport with him because of a common interest in philately.

Menninger also displayed other talents, such as playing the piano and exhibiting an appropriate sense of humour in gatherings of senior military officers, which further enhanced his acceptance within the staff of the US Surgeon General and increased his influence, leading to his subsequent promotion to Brigadier General. Menninger used his position to add a substantial number of psychiatrists to the Surgeon General’s division.2

The acceptance that Menninger developed within the division also led him to chair a committee that produced the War department technical bulletin, medical 203 in 1946, a document that classified mental illness in a detailed fashion for the first time in the US. Menninger’s interest in psychological factors related to mental illness, rather than the more narrow categorisation of the mental illness of people in institutional care, appeared to strongly influence the document, which later had a significant effect on the development of the DSM by the American Psychiatric Association.2

Trends in pre-existing mental health disorders among parents of infants born in Western Australia from 1990 to 2005

It has long been established that parental mental health can affect children’s outcomes.1 These outcomes not only relate to children’s mental health but also language development, behaviour and physical health.2 An intergenerational pathway of how parental mental health can adversely affect children’s development has been suggested, which includes the direct effects of the illness and associated contextual stressors, such as poverty and disruptions to caregiving.3 Social welfare agencies have reported increasing numbers of families facing complex issues, including parental mental health problems and substance use, resulting in concerns about children’s wellbeing.4,5

While Australia has good data on the rates of mental health disorders in the Australian community, the prevalence of mental health disorders in parents is difficult to estimate. The National Survey of Mental Health and Wellbeing reported that 25% of individuals aged 16–44 years had a mental health disorder in the 12 months before completing the survey;6 this is an age group in which people are most likely to become parents. However data about adults with mental health disorders who are also parents are not routinely collected. To date, no studies have investigated the population prevalence of previous and current mental health disorders in parents, including trends over time. We aimed to fill this research gap by using mental health-related data on public and private hospital inpatient admissions and public outpatient contacts, to provide information on trends in parental mental health disorders in particular diagnostic groups.

Methods

Study population and data sources

To determine the population prevalence of parental mental health disorders, we conducted a retrospective cohort study of all parents of infants born in Western Australia between 1990 and 2005 using de-identified population level data, linked across health datasets. The health data collections used were WA’s Hospital Morbidity Data Collection, Mental Health Information System, Midwives Notification System and Birth Register. The Hospital Morbidity Data Collection contains information on all hospital admissions (public and private hospitals) with corresponding diagnostic information using the International Classification of Diseases (ICD)7 coding system recorded for each episode of care for parents from 1970 to 2005 (ICD-8 for 1970 to 1978, ICD-9 for 1979 to June 1999, ICD-10 for July 1999 to 2005). The Mental Health Information System contains information on all mental health-related public and private inpatient admissions and public outpatient contacts for the period 1980–2005. The Midwives Notification System contains birth information, including maternal characteristics and infant outcomes, for the period 1990–2005.

Each of the datasets are linked by the WA Data Linkage Branch using probabilistic matching that compares identifiers across datasets with extensive clerical review to resolve doubtful links.8 Only a unique project identifier and the individual’s clinical information is provided to the researcher; identifying information is removed.

Ethics

Ethics approval for this study was obtained from the University of Western Australia Human Research Ethics Committee, WA Department of Health Human Research Ethics Committee and Western Australian Aboriginal Health Ethics Committee.

Parental mental health and demographic variables

Mental health contact by parents was based on any reported diagnosis relating to mental health before the birth year of the child. Parents were identified as having had a mental health-related hospital admission or outpatient contact if they had mental health-related ICD diagnostic codes (ICD-9 codes 290–319) or external cause of self-harm (ICD-9 codes E950–E959).7 ICD-8 and ICD-10 codes were mapped to ICD-9 codes. Parents were defined as having a current mental health contact if there had been a contact in the 12 months before the year of birth. For each birth, parents with a prior mental health contact were counted once even if they had had more than one prior mental health contact; similarly, parents with a current mental health contact were counted once even if they had had more than one mental health contact in the 12 months before the birth year. Mental health diagnostic groups were determined by using the mental health diagnoses reported for the most recent contact before the birth year. If there was more than one diagnosis, the parent was grouped into each relevant diagnostic group. Diagnostic groups and codes for each group are listed in the Appendix.

Aboriginal and Torres Strait Islander children and parents (hereafter referred to as “Aboriginal”) were identified if the child or parent was listed in the birth or midwives data as being Aboriginal or Torres Strait Islander. Socioeconomic status was determined using the Index of Relative Social Disadvantage assigned to each collection district by the Australian Bureau of Statistics.9 Four levels of disadvantage were classified: 1 (low disadvantage) to 4 (high disadvantage).

Statistical analysis

Prevalence of prior mental health disorders in parents of children born during the period 1990–2005 (per 1000 births) was calculated for each birth year, using birth data as denominators. Separate analyses were conducted for mothers, fathers, all births, first births and mental health diagnostic groups. First births for mothers were defined as those for which the midwives data listed parity as zero and listed the sum of previous live births and still births as zero. For fathers, first births were identified by selecting the earliest birth. Age-specific rates were calculated for parental age.

Trends are presented as the percentage change in the odds for each increase in birth year and their 95% CI. Generalised estimating equations were used to calculate robust standard errors for odds ratios when analysing all births, owing to clustering of births to the same parent. Logistic regression was used to calculate odds ratios for Aboriginality, maternal age and socio-economic status where the outcome was a first-born child who had a mother with a prior mental health disorder, with estimated odds ratios stratified by birth-year group (1990–1993, 1994–1997, 1998–2001 and 2002–2005). R version 2.11.1 (R Foundation for Statistical Computing)10 was used for all analyses.

Results

Of 404 022 live births in the period 1990–2005, 43 700 children were born to mothers with a prior mental health disorder. Overall, prevalence of prior mental health disorders in mothers increased, from 76 per 1000 births in 1990 to 131 per 1000 births in 2005 (Box 1). There was an estimated 3.7% (95% CI, 3.5%–4.0%) increase per year in the odds of children being born to mothers with a prior mental health disorder. Prior mental health disorders in mothers of first-born children also increased, from 66 per 1000 births in 1990 to 88 per 1000 births in 2005 (a 2.0% [95% CI, 1.6%–2.4%] increase in odds per year), although there was a plateau from 2001 onwards (Box 1). When the analysis was restricted to mothers with a current mental health contact, there was an increase from 12 per 1000 births in 1990 to 27 per 1000 births in 2005 (4.7% [95% CI, 4.2%–5.2%] increase in odds per year) for all births, and an increase from 14 per 1000 births in 1990 to 17 per 1000 births in 2005 (2.4% [95% CI, 1.6%–3.3%] increase in odds per year) for first-born children (Box 1).

There were 31 201 children born to fathers with a prior mental health disorder. Overall, prevalence of prior mental health disorders in fathers increased, from 56 per 1000 births in 1990 to 88 per 1000 births in 2005 (Box 1). There was a 3.1% (95% CI, 2.8%–3.4%) increase per year in the odds of children being born to fathers with a prior mental health disorder. Prevalence of prior mental health disorders in fathers of first-born children increased at a similar rate, from 52 per 1000 births in 1990 to 71 per 1000 births in 2005 (a 2.4% [95% CI, 2.0%–2.8%] increase in odds per year). However, similar to mothers, the rate plateaued from 2000 onwards. When the analysis was restricted to fathers with a current mental health contact, the rates were 7.9 per 1000 births in 1990 and 8.2 per 1000 births in 2005 for all births, with fluctuations over that time (Box 1).

When we analysed the data by maternal diagnostic group, the most prevalent disorders among mothers, at any time before birth, were substance-related disorders — prevalence increased from 19 per 1000 births in 1990 to 32 per 1000 births in 2005 (4.6% increase per year; Box 2). Among mothers, there were also large increases in adjustment and stress-related disorders (5.5% per year) and non-organic psychotic disorders (16.7% per year). The most prevalent disorders among fathers at any time before birth were substance-related disorders, which increased from 32 per 1000 births to 40 per 1000 births (1.7% increase per year; Box 2). Among fathers, there were also large increases in organic disorders (6.7% per year) and adjustment and stress-related disorders (9.3% per year).

The proportion of Aboriginal children born to mothers with a prior mental health disorder (269 per 1000 births) was more than twice that for non-Aboriginal children (119 per 1000 births) in 2005. The rates were lower for fathers, but there was a similar difference between Aboriginal children (204 per 1000 births) and non-Aboriginal children (80 per 1000 births). The rates for Aboriginal and non-Aboriginal children had increased from 1990 to 2005, although the increases were greater for Aboriginal children (5.8% v 3.3% increase in odds per year for mothers; 6.5% v 2.6% increase in odds per year for fathers).

There was a higher prevalence of mental health disorders in mothers and fathers aged < 20 years in 2005 compared with the other age groups (158 per 1000 births and 147 per 1000 births, respectively), closely followed by those aged 20–29 years (148 per 1000 births and 114 per 1000 births, respectively).

The results of a multiple logistic regression analysis of factors associated with the odds of the first child being born to a mother with a prior mental health disorder are shown in Box 3. Young maternal age (< 30 years), low socioeconomic status and being Aboriginal significantly increased the odds. An increasing temporal trend in the odds of being born to a mother with a prior mental health disorder was seen in the youngest maternal age category (< 20 years).

Discussion

Our study is one of few that have used population-level linked data to determine the prevalence of a prior history of mental health disorders in parents and, to our knowledge, the only study to examine trends over time. It shows that prevalence of prior mental health disorders increased in parents of infants born from 1990 to 2005; there was a 3.7% increase per year for mothers and a 3.1% increase per year for fathers. The lower prevalence for fathers could be due to underascertainment of fathers on the Birth Register, which has been documented previously.11

There are a number of possible reasons for the increase. It could be due to broader service availability in WA for inpatients and outpatients, the increasing trend to deinstitutionalise people with mental health disorders (particularly during the mid 1980s),12 and better data collection by the Mental Health Information System. However, there could be a true increase in the prevalence of mental health disorders in parents. A previous study by our group showed that there had been an increase in the prevalence of babies born with neonatal withdrawal syndrome in WA,13 indicating increasing drug use by pregnant women. This is also indicated by our data, which show increasing trends in mental health disorders relating to substance use between 1990 and 2005. Another study that used linked prescription and birth data has shown high and increasing use of antidepressants during pregnancy.14 An Australian national survey of psychosis also showed an increase (from 1997 to 2010) in the number of dependent children living at home with parents who have psychosis, particularly mothers.15 These data highlight the increasing burden of parental mental health disorders on the mental health system and on families.

The diagnostic group for which prevalence was highest, in mothers and fathers, was substance-related disorders. For mothers, prevalence was also high for three other diagnostic groups: self-harm ever; depression not otherwise classified and neurotic disorders; and adjustment and stress-related disorders. Aboriginal children had a greater burden of parental mental health disorders compared with non-Aboriginal children for both mothers and fathers. This is consistent with findings from a national survey which found that Aboriginal Australians were twice as likely to report high or very high levels of psychological distress compared with non-Aboriginal Australians.16 In addition, our study shows that there were larger increases over time in the proportions of Aboriginal children born to mothers and fathers with a prior mental health disorder compared with increases for non-Aboriginal children. This indicates an increasing burden in Aboriginal families of parents with a mental disorder, and highlights the need for culturally appropriate mental health services such as healing and wellbeing centres, as called for in the Bringing them home report.17

Younger parental age is also associated with a higher burden of mental health disorders and this has risen over time. National mental health surveys have shown that young people aged 16–24 years have the highest prevalence of mental health disorders in the 12 months before completing the survey,6 which is consistent with our findings.

Although the strengths of our study included its population-based nature and the long period of data collection, our data on prevalence of mental health disorders are likely to be underestimates because we only captured inpatient hospital admissions and public outpatient contacts in the Mental Health Information System. We did not have access to primary care data or a prescription database that could have provided data on individuals who saw general practitioners or received prescriptions for mental health disorders; therefore, we may have potentially missed patients in the community with mental health disorders. By only using hospital admissions data and public outpatient contact data, our sample is biased towards patients with more severe mental disorders.

Despite these limitations, the use of population-level data overcomes many of the difficulties associated with traditional research designs, such as surveys or interviews. Parents may be reluctant to admit to a mental health disorder, particularly those related to substance use. It is important to obtain prevalence estimates of parental mental health disorders to inform practitioners, service providers and policymakers on the extent of the burden and the resources required. Most importantly, our study shows that there has been an increase in prevalence of children born to parents with previous mental health contacts. Moreover, although under-ascertained, our study includes fathers, an important group who are often not captured or not assessed in surveys and screening tools. Our study also highlights high-risk groups that have had increasing mental health admissions over time, including Aboriginal families, younger parents and low socioeconomic groups. These high-risk groups should be a focus for intervention and prevention.

In terms of practice and policy implications, parents with mental health disorders should be offered early intervention, referral and support. The National Perinatal Depression Initiative has highlighted the importance of early assessment and intervention in the perinatal period.18 GPs and mental health workers also play important roles in discussing the ongoing impact of mental health disorders on families and in working with families to plan for respite and support when required. The National Institute for Health and Clinical Excellence has provided guidelines for the clinical management of antenatal and postnatal mental health problems experienced by mothers and has stipulated the importance of the ongoing management of mental disorders.19 As the World Health Organization has stated, “effective solutions for mental disorders are available . . . Some mental disorders can be prevented, while most can be treated”.20 Mental health needs to be considered during treatment and health care planning for parents, to alleviate the symptoms experienced by individuals and to reduce the impact of symptoms on children and their families.

1 Prevalence of children having a parent with a prior mental health disorder or current mental health contact (all birth and first births, Western Australia, 1990–2005)

2 Prevalence of children having a parent with a prior mental health disorder, by mental health diagnostic group (all births, Western Australia, 1990–2005)

3 Factors associated with the first child being born to a mother with a prior mental health disorder

Odds ratio (95% CI)

1990–1993

1994–1997

1998–2001

2002–2005

Aboriginal or Torres Strait Islander

1.3 (1.1–1.5)

1.2 (1.0–1.4)

1.2 (1.1–1.4)

Maternal age

< 20 years

1.9 (1.6–2.2)

1.7 (1.5–2.0)

2.1 (1.9–2.4)

2.2 (1.9–2.5)

20–29 years

1.2 (1.1–1.4)

1.2 (1.1–1.3)

1.3 (1.2–1.5)

1.4 (1.3–1.6)

30–39 years

Reference

> 39 years

1.2 (0.7–1.9)

1.0 (0.6–1.4)

1.4 (1.0–1.8)

1.2 (0.9–1.6)

Socioeconomic status

1 — low disadvantage

Reference

1.1 (1.0–1.3)

1.3 (1.2–1.5)

1.2 (1.1–1.4)

1.1 (1.0–1.2)

1.2 (1.0–1.3)

1.4 (1.2–1.6)

1.4 (1.3–1.6)

1.3 (1.2–1.5)

4 — high disadvantage

1.5 (1.3–1.7)

1.7 (1.5–1.9)

1.6 (1.5–1.8)