Perinatal mental health screening for women of refugee background: Addressing a major gap in pregnancy care.

BACKGROUND: Perinatal mental health disorders affect up to 20% of all women. Women of refugee background are likely to be at increased risk, yet little research has explored this. This study aimed to assess if women of refugee background are more likely to screen risk positive for depression and anxiety than non-refugee women, using the Edinburgh Postnatal Depression Scale (EPDS); and if screening in pregnancy using the EPDS enables better detection of depression and anxiety symptoms in women of refugee background than routine care. METHODS: This implementation study was conducted at an antenatal clinic in Melbourne, Australia. Women of refugee and non-refugee backgrounds were screened for depression using English or translated versions of the EPDS and a psychosocial assessment on a digital platform. The psychosocial assessment records of 34 women of refugee background receiving routine care (no screening) were audited. RESULTS: Overall, 274 women completed the EPDS; 43% of refugee background. A similar proportion of women of refugee and non-refugee backgrounds had EPDS scores of ≥9 (39% vs. 40% p = 0.93). Women receiving the combined EPDS and psychosocial screening were more likely to receive a referral for further support than women receiving routine care (41% vs. 18%, p = 0.012). CONCLUSION: Similarly, high proportions of women of refugee and non-refugee backgrounds were at increased risk of experiencing a current depressive disorder in early pregnancy, suggesting pregnancy care systems should acknowledge and respond to the mental health needs of these women. Screening appeared to facilitate the identification and referral of women compared to routine care.

Introducing and integrating perinatal mental health screening: Development of an equity-informed evidence-based approach.

BACKGROUND: Pregnancy is a time of increased risk for developing or re-experiencing mental illness. Perinatal mental health screening for all women is recommended in many national guidelines, but a number of systems-level and individual barriers often hinder policy implementation. These barriers result in missed opportunities for detection and early intervention and are likely to be experienced disproportionately by women from culturally and linguistically diverse backgrounds, including women of refugee backgrounds. The objectives of this study were to develop a theory-informed, evidence-based guide for introducing and integrating perinatal mental health screening across health settings and to synthesize the learnings from an implementation initiative and multisectoral partnership between the Centre of Perinatal Excellence (COPE), and a university-based research centre. COPE is a nongovernmental organization (NGO) commissioned to update the Australian perinatal mental health guidelines, train health professionals and implement digital screening. METHODS: In this case study, barriers to implementation were prospectively identified and strategies to overcome them were developed. A pilot perinatal screening programme for depression and anxiety with a strong health equity focus was implemented and evaluated at a large public maternity service delivering care to a culturally diverse population of women in metropolitan Melbourne, Australia, including women of refugee background. Strategies that were identified preimplementation and postevaluation were mapped to theoretical frameworks. An implementation guide was developed to support future policy, planning and decision-making by healthcare organizations. RESULTS: Using a behavioural change framework (Capability, Opportunity, Motivation-Behaviour Model), the key barriers, processes and outcomes are described for a real-world example designed to maximize accessibility, feasibility and acceptability. A Programme Logic Model was developed to demonstrate the relationships of the inputs, which included stakeholder consultation, resource development and a digital screening platform, with the outcomes of the programme. A seven-stage implementation guide is presented for use in a range of healthcare settings. CONCLUSIONS: These findings describe an equity-informed, evidence-based approach that can be used by healthcare organizations to address common systems and individual-level barriers to implement perinatal depression and anxiety screening guidelines. PATIENT OR PUBLIC CONTRIBUTION: These results present strategies that were informed by prior research involving patients and staff from a large public antenatal clinic in Melbourne, Australia. This involved interviews with health professionals from the clinic such as midwives, obstetricians, perinatal mental health and refugee health experts and interpreters. Interviews were also conducted with women of refugee background who were attending the clinic for antenatal care. A steering committee was formed to facilitate the implementation of the perinatal mental health screening programme comprising staff from key hospital departments, GP liaison, refugee health and well-being, the NGO COPE and academic experts in psychology, midwifery, obstetrics and public health. This committee met fortnightly for 2 years to devise strategies to address the barriers, implement and evaluate the programme. A community advisory group was also formed that involved women from eight different countries, some of refugee background, who had recently given birth at the health service. This committee met bimonthly and was instrumental in planning the implementation and evaluation such as recruitment strategies, resources and facilitating an understanding of the cultural complexity of the women participating in the study.

Patterns of psychiatric admission in Australian pregnant and childbearing women.

PURPOSE: The early postnatal period is a time of increased risk for psychiatric admission. However, there is scope to further examine if this increase in risk extends to the entire perinatal period (pregnancy and first postnatal year), and how it compares to admission outside of the perinatal period. METHODS: Data were linked across birth and hospital admission registers from July 2000 to December 2009. The study cohort, consisting of all pregnant and childbearing women with a psychiatric history, was divided into two groups: case women (at least one perinatal principal psychiatric admission in the study period) (38%) and comparison women (no perinatal principal psychiatric admissions) (62%). Outcomes were admission rate and length of stay adjusted for diagnosis, socio-demographic factors and timing of admission. RESULTS: Antenatal and postnatal admissions rates were both higher than non-perinatal admission rates for case women for all diagnoses. There was little evidence that women with perinatal admissions were at an increased risk of admissions at other times. Socially disadvantaged women had significantly fewer and shorter admissions than their respective counterparts. CONCLUSIONS: The entire perinatal period is a time of increased risk for admission across the range of psychiatric disorders, compared to other times in a woman's childbearing years. Reduced admission rate and length of stay for socially disadvantaged women suggest lack of equity of access highlighting the importance of national perinatal mental health policy initiatives inclusive of disadvantaged groups.

Policy Impacts of the Australian National Perinatal Depression Initiative: Psychiatric Admission in the First Postnatal Year.

This paper helps to quantify the impact of the Australian National Perinatal Depression Initiative (NPDI) on postnatal inpatient psychiatric hospitalisation. Based on individual hospital admissions data from New South Wales and Western Australia, we found that the NPDI reduced inpatient psychiatric hospital admission by up to 50% [0.9% point reduction (95% CI 0.70-1.22)] in the first postnatal year. The greatest reduction was observed for adjustment disorders. The NPDI appears to be associated with fewer post-birth psychiatric disorders hospital admissions; this suggests earlier detection of psychiatric disorders resulting in early care of women at risk during their perinatal period.

The National Perinatal Depression Initiative: An evaluation of access to general practitioners, psychologists and psychiatrists through the Medicare Benefits Schedule.

OBJECTIVE: To evaluate the impact of the National Perinatal Depression Initiative on access to Medicare services for women at risk of perinatal mental illness. METHOD: Retrospective cohort study using difference-in-difference analytical methods to quantify the impact of the National Perinatal Depression Initiative policies on Medicare Benefits Schedule mental health usage by Australian women giving birth between 2006 and 2010. A random sample of women of reproductive age enrolled in Medicare who had not given birth where used as controls. The main outcome measures were the proportions of women giving birth each month who accessed a Medicare Benefits Schedule mental health items during the perinatal period (pregnancy through to the end of the first postnatal year) before and after the introduction of the National Perinatal Depression Initiative. RESULTS: The proportion of women giving birth who accessed at least one mental health item during the perinatal period increased from 88 to 141 per 1000 between 2007 and 2010. The difference-in-difference analysis showed that while there was an overall increase in Medicare Benefits Schedule mental health item access as a result of the National Perinatal Depression Initiative, this did not reach statistical significance. However, the National Perinatal Depression Initiative was found to significantly increase access in subpopulations of women, particularly those aged under 25 and over 34 years living in major cities. CONCLUSION: In the 2 years following its introduction, the National Perinatal Depression Initiative was found to have increased access to Medicare funded mental health services in particular groups of women. However, an overall increase across all groups did not reach statistical significance. Further studies are needed to assess the impact of the National Perinatal Depression Initiative on women during childbearing years, including access to tertiary care, the cost-effectiveness of the initiative, and mental health outcomes. It is recommended that new mental health policy initiatives incorporate a planned strategic approach to evaluation, which includes sufficient follow-up to assess the impact of public health strategies.

Depression in the perinatal period: awareness, attitudes and knowledge in the Australian population.

OBJECTIVE: To establish a benchmark of awareness, knowledge and attitudes in Australia in relation to depression and its treatment in the perinatal period, and to identify demographic factors associated with perinatal mental health literacy. METHOD: A cross-sectional telephone survey (n = 1201) of a randomly selected sample of adults in each State and Territory of Australia, conducted in late 2009. RESULTS: Depression was the most frequently cited general health problem for women after childbirth (43.6% of spontaneous responses), in contrast to previous findings of low awareness of depression generally. A total of 94% of adults believed that postnatal depression requires specialized treatment. Older Australians (55 + years) identified postnatal depression less readily than younger Australians. Although well recognized as a specific mental health issue, as a general health issue antenatal depression had low recognition and was viewed by 52% of respondents as 'normal'. Community beliefs about perinatal rates of depression appeared realistic. Men and women differed in their knowledge and beliefs about the symptoms and causes of postnatal depression. Difficulty in mother-infant bonding was seen as a common sign of postnatal depression, particularly by women. Most commonly, postnatal depression was perceived as having a biological rather than psychosocial etiology (30% of men, 41% of women). Recognition of anxiety in the postnatal period was relatively low, although higher among those with mental health training. Over 80% of Australians believed that all new mothers should be routinely assessed for depression. CONCLUSIONS: Awareness of postnatal depression appeared to be at a high level in the community, but both anxiety and antenatal depression were comparatively under-recognized, suggesting there is considerable scope for awareness-raising. Established risk factors for postnatal depression were not coherently recognized. Ongoing tracking of perinatal mental health literacy in Australia is likely to be valuable in assessing the impact of future public awareness efforts.

Improving Mental Health in Pregnancy for Refugee Women: Protocol for the Implementation and Evaluation of a Screening Program in Melbourne, Australia.

BACKGROUND: Identifying mental health disorders in migrant and refugee women during pregnancy provides an opportunity for interventions that may benefit women and their families. Evidence suggests that perinatal mental health disorders impact mother-infant attachment at critical times, which can affect child development. Postnatal depression resulting in suicide is one of the leading causes of maternal mortality postpartum. Routine screening of perinatal mental health is recommended to improve the identification of depression and anxiety and to facilitate early management. However, screening is poorly implemented into routine practice. This study is the first to investigate routine screening for perinatal mental health in a maternity setting designed for refugee women. This study will determine whether symptoms of depression and anxiety are more likely to be detected by the screening program compared with routine care and will evaluate the screening program's feasibility and acceptability to women and health care providers (HCPs). OBJECTIVE: The objectives of this study are (1) to assess if refugee women are more likely to screen risk-positive for depression and anxiety than nonrefugee women, using the Edinburgh Postnatal Depression Scale (EPDS); (2) to assess if screening in pregnancy using the EPDS enables better detection of symptoms of depression and anxiety in refugee women than current routine care; (3) to determine if a screening program for perinatal mental health in a maternity setting designed for refugee women is acceptable to women; and (4) to evaluate the feasibility and acceptability of the perinatal mental health screening program from the perspective of HCPs (including the barriers and enablers to implementation). METHODS: This study uses an internationally recommended screening measure, the EPDS, and a locally developed psychosocial questionnaire, both administered in early pregnancy and again in the third trimester. These measures have been translated into the most common languages used by the women attending the clinic and are administered via an electronic platform (iCOPE). This platform automatically calculates the EPDS score and generates reports for the HCP and woman. A total of 119 refugee women and 155 nonrefugee women have been recruited to evaluate the screening program's ability to detect depression and anxiety symptoms and will be compared with 34 refugee women receiving routine care. A subsample of women will participate in a qualitative assessment of the screening program's acceptability and feasibility. Health service staff have been recruited to evaluate the integration of screening into maternity care. RESULTS: The recruitment is complete, and data collection and analysis are underway. CONCLUSIONS: It is anticipated that screening will increase the identification and management of depression and anxiety symptoms in pregnancy. New information will be generated on how to implement such a program in feasible and acceptable ways that will improve health outcomes for refugee women. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13271.

Mental health consultations in the perinatal period: a cost-analysis of Medicare services provided to women during a period of intense mental health reform in Australia.

Objective To quantify total provider fees, benefits paid by the Australian Government and out-of-pocket patients' costs of mental health Medicare Benefits Schedule (MBS) consultations provided to women in the perinatal period (pregnancy to end of the first postnatal year). Method A retrospective study of MBS utilisation and costs (in 2011-12 A$) for women giving birth between 2006 and 2010 by state, provider-type, and geographic remoteness was undertaken. Results The cost of mental health consultations during the perinatal period was A$17.5million for women giving birth in 2007, rising to A$29million in 2010. Almost 9% of women giving birth in 2007 had a mental health consultation compared with more than 14% in 2010. An increase in women accessing consultations, along with an increase in the average number of consultations received, were the main drivers of the increased cost, with costs per service remaining stable. There was a shift to non-specialist care and bulk billing rates increased from 44% to 52% over the study period. In 2010, the average total cost (provider fees) per woman accessing mental health consultations during the perinatal period was A$689, and the average cost per service was A$133. Compared with women residing in regional and remote areas, women residing in major cities where more likely to access consultations, and these were more likely to be with a psychiatrist rather than an allied health professional or general practitioner. Conclusion Increased access to mental health consultations has coincided with the introduction of recent mental health initiatives, however disparities exist based on geographic location. This detailed cost analysis identifies inequities of access to perinatal mental health services in regional and remote areas and provides important data for economic and policy analysis of future mental health initiatives. What is known about the topic? The mental healthcare landscape in Australia has changed significantly over the last decade, with the introduction of numerous policies aimed at prevention, screening and improving access to treatment. Several of these policies have been aimed at perinatal depression, which affects 15% of women giving birth. What does this paper add? This is the first population-based, cost analysis of mental health consultations during the perinatal period (pregnancy to end of the first postnatal year) in Australia. Almost 9% of women giving birth in 2007 had a mental health consultation funded though the MBS, compared with more than 14% in 2010. Over the same period there was a shift from psychiatric consultations to allied health and primary care consultations. In 2010, the total cost (provider fee) of these consultations was A$29million, equating to an average cost per woman of A$689 and A$133 per service. Despite the changing policy environment, significant disparities exist in access to care according to geographic remoteness. What are the implications for practitioners? Recent policy initiatives have resulted in increasing access to mental health consultations for women around the time of childbirth. However, policies are needed that target women outside of major cities. Furthermore, evidence is needed on whether the increase in access has resulted in improved mental health outcomes for women at this vulnerable time. The cost data provided by this study are unique and will inform future mental health policy development and health economic evaluations.

Identifying depression in a family member: the carers' experience.

BACKGROUND: Current research activity has not focused adequately upon the experience of caring for a person with depression. This study aimed to explore the carer's experience of living with a person with clinical depression. Specific focus was given to the detection and recognition of the disorder. METHODS: A series of focus groups and in-depth interviews was conducted with carers living with a person with clinical depression in rural and metropolitan Australia. Participants were recruited via support agencies and local advertising of the research. RESULTS: Signs and symptoms of depression were recognised by carers, generally in hindsight. Barriers to early detection were identified by carers and these were likely to contribute to the psychological reaction of carers and to the eventual diagnosis of the care recipient. LIMITATIONS: The study would be strengthened by a greater diversity of relationships between the carer and the care recipient. CONCLUSIONS: This research has important implications for clinical practice and health policy, which must evolve to facilitate early detection and intervention, and to address the experience and needs of carers.

Qualitative insights into women's personal experiences of perinatal depression and anxiety.

BACKGROUND AND AIM: Symptoms of perinatal depression and anxiety are usually described and understood from a nosological perspective. This research sought to gain insight into women's lived experience of postnatal depression and anxiety, the factors that contribute to these symptoms and the context in which they develop. METHOD: Face to face and telephone interviews were conducted with 28 women from metropolitan and rural areas across Australia, who had experienced postnatal depression and/or anxiety within the last five years. Analysis was conducted from a grounded theory perspective. FINDINGS: Particular symptoms of anxiety and depression develop in the context of the numerous changes inherent to the transition to motherhood and contribute to a common experience of frustration and loss. Symptoms were also associated with feelings of dissatisfaction with the pregnancy and motherhood experience. CONCLUSIONS: The findings provide useful insights into women's experiences of mental health symptoms during the perinatal period, how these symptoms present and the factors involved in their development and maintenance. The need to consider women's perspectives to develop resources and health promotions strategies, as well as within the context of relationships with health professionals is highlighted. The study emphasizes the need for greater, more accurate information surrounding perinatal depression and the need to increase the profile and awareness of anxiety disorders.

Detection and management of mood disorders in the maternity setting: the Australian Clinical Practice Guidelines.

BACKGROUND: Mood disorders arising in the perinatal period (conception to the first postnatal year), occur in up to 13% of women. The adverse impact of mood disorders on mother, infant and family with potential long-term consequences are well documented. There is a need for clear, evidence-based, guidelines for midwives and other maternity care providers. AIM: To describe the process undertaken to develop the Australian Clinical Practice Guidelines for Depression and Related Disorders in the Perinatal Period and to highlight the key recommendations and their implications for the maternity sector. METHOD: Using NHMRC criteria, a rigorous systematic literature review was undertaken synthesising the evidence used to formulate graded guideline recommendations. Where there was insufficient evidence for recommendations, Good Practice Points were formulated. These are based on lower quality evidence and/or expert consensus. FINDINGS: The quality of the evidence was good in regards to the use of the Edinburgh Postnatal Depression Scale and psychological interventions, but limited as regards medication use and safety perinatally. Recommendations were made for staff training in psychosocial assessment; universal screening for depression across the perinatal period; and the use of evidence based psychological interventions for mild to moderate depression postnatally. Good Practice Points addressed the use of comprehensive psychosocial assessment--including risk to mother and infant, and consideration of the mother-infant interaction--and gave advice around the use and safety of psychotropic medications in pregnancy and breastfeeding. In contrast to their international counterparts, the Australian guidelines emphasize a more holistic, woman and family centred approach to the management of mental health and mood disorders in the perinatal setting. CONCLUSION: The development of these Guidelines is a first step in translating evidence into practice and providing Australian midwives and other maternity care providers with clear guidance on the psychosocial management of women and families.

Perspectives of young people on depression: awareness, experiences, attitudes and treatment preferences.

AIM: Ascertaining current knowledge and attitudes towards depression among young people is vital for developing campaigns promoting community awareness and early intervention. METHODS: Cross-sectional computer-assisted telephone interviews of persons aged 18-90 years were conducted by beyondblue in Australia in 2002 and 2004/05. Items assessed consideration of depression as a major general health or mental health problem, knowledge about prevalence of depression, usual age of onset for depression or anxiety and treatment preferences. RESULTS: The surveys included 2003 and 3200 persons, respectively, with 285 and 400 aged between 18 and 25 years. Depression was not recognized by young persons as a major general health problem (1-2% of responses), but was the most frequently named mental health problem (37-42%). Younger persons were more likely than older persons to see depression as the major mental health problem, placing less emphasis on alcohol and other drug problems. They preferred first to seek help from family or friends (61-65%) and try non-pharmacological treatments. Although understanding of the helpfulness of several evidence-based treatments was good, many younger respondents still considered non-evidence-based treatments to be helpful. A quarter of subjects believed antidepressant medications were harmful and that alcohol use may be helpful. CONCLUSIONS: Although knowledge about depression was good, young people do not recognize depression as a major general health problem and remain reluctant to use professional services. These attitudes represent significant barriers to seeking treatment early in the course of common mental health problems.

Positive relationships between public awareness activity and recognition of the impacts of depression in Australia.

OBJECTIVE: This report records the level of exposure to depression-related information across the Australian community and explores associations with recognition of depression and relevant sociodemographic factors. METHOD: A cross-sectional telephone survey was conducted with a representative community sample. Participants consisted of 3200 respondents (400 respondents across each Australian State/Territory). RESULTS: Sixty-five point four per cent (n=2089/3193) of respondents indicated that they or someone close to them had experienced depression, of whom 18.7% (n=391/2089) reported a personal experience of this illness. Various measures of recent exposure to depression-related information were high with 69.0% (n=2207/3200) reporting that they had seen, read or heard something in the media in the last 12 months. Recognition of beyondblue: the national depression initiative was also surprisingly high (61.9%, 1982/3200). Those with greater understanding that depression is common and debilitating were more likely to recall recent media stories, spontaneously recall relevant organizations such as beyondblue, to have had direct or family experiences, to be younger and to have achieved higher levels of education. Depression, however, is rarely mentioned (1.3%, 47/3720) as a major general health as distinct from a mental health problem. CONCLUSION: The active promotion of depression-related material to the community appears to have contributed to recognition of the commonality and impacts of this illness. Although depression is commonly recognized as a mental health problem, it is not yet considered a major general health problem. Further, like many public health campaigns, those initially reached appear more likely to be female, younger, better educated and residing in metropolitan areas.

The experience of living with a person with an eating disorder: the impact on the carers.

Using a combination of focus groups and individual in-depth interviews, the experience of living with a person with an eating disorder was explored in 24 carers. Attention was given to the progression of the disorder to understand its impact upon the family throughout the stages of the illness. Caring for a person with an eating disorder impacted upon the primary carer and the family throughout the course of the illness. Despite this, the impact on the carers was seldom acknowledged and the needs of these carers and their families were unrecognized and neglected by health professionals.

A comparative evaluation of community treatments for post-partum depression: implications for treatment and management practices.

OBJECTIVE: To compare existing community treatments for post-partum depression (PPD), treatment efficacy was evaluated for 146 women seeking treatment for PPD in the local community. METHODS: Self-report questionnaires were designed to assess clinical depression and anxiety (psychological and physiological), risk factors, treatment satisfaction and the impact of social supports. RESULTS: Comparison of treated subjects with those on a wait-list demonstrated that depression and the psychological component of anxiety decreased significantly after treatment. Psychological and pharmacological interventions produced similar clinical benefit in the treatment of psychological symptoms, and receiving both treatments in combination was of no added clinical benefit in the immediate or longer term. Individual treatment was associated with more rapid treatment gains initially than group treatment. However, the benefits of group treatment emerged during the 6 months following treatment, leading both interventions to be equally effective in the longer term. Cognitive behavioural therapy was not superior to the combination of non-specific counselling or behavioural strategies, either immediately following treatment or 6 months later. CONCLUSIONS: Clinical efficacy together with other clinical and financial benefits strongly advocate the application of psychological treatment for PPD. Clear parallels between PPD and general depression support the application of knowledge about general depression to extend understanding of PPD and refine clinical management practices.

Monitoring awareness of and attitudes to depression in Australia.

OBJECTIVES: To determine the degree of recognition and understanding of depression and its treatments in Australia in 2001, and detail factors and personal experiences that influence awareness of and attitudes to depression. DESIGN AND SETTING: Cross-sectional survey of a representative community sample (900 randomly selected respondents), via telephone interview, conducted 5-7 October 2001. MAIN OUTCOME MEASURES: Reports of community awareness, knowledge and attitudes to depression and its treatments in Australia. RESULTS: The Australian community does not view mental health as a major general health issue. When asked specifically, depression was recognised as the most common mental health problem. Recognition of depression was greater among women and younger people. Most people (58%; 508/879) reported that they or a family member had experienced depression. People younger than 55 years and people with personal or family experiences of depression viewed depression as more disabling than other chronic medical conditions. Half the respondents differentiated depression from normal sadness. Awareness of common risk versus protective factors was limited. Most people endorsed a preference for self-help and non-pharmacological treatments, but community views of antidepressant drugs were less negative than expected. General practitioners were identified as the preferred point of first contact among healthcare professionals. CONCLUSIONS: Although mental health is still not highlighted as a major health issue, Australians do recognise depression as the major mental health problem. Women and younger people have more substantial knowledge about key aspects of depression and its treatments.

Exploring the perspectives of people whose lives have been affected by depression.

OBJECTIVES: To describe the experiences of people whose lives have been affected by depression. DESIGN, SETTING AND PARTICIPANTS: Thematic review of data collected from 21 community meetings (1529 people, providing 911 evaluation forms) and nine focus groups (69 individuals) held nationally, and written feedback and website-based interactions with beyondblue: the national depression initiative between April and December 2001. MAIN OUTCOME MEASURES: Barriers to social participation experienced by people whose lives have been affected by depression, and their interactions with the healthcare system. RESULTS: The key theme was the experience of stigma, which was evident in healthcare settings and in barriers to social participation, particularly regarding employment. Inadequacies of primary care and specialist treatment systems were highlighted. Particular emphasis was placed on limited access to high-quality primary care and non-pharmacological care. The stigmatising attitudes of many healthcare providers were notable. Within society, lack of access to knowledge and self-care or mutual support services was evident. Lack of support both from and for people in caring roles was also emphasised. CONCLUSIONS: People with depression are subject to many of the same attitudes, inadequate healthcare and social barriers reported by people with psychotic disorders. Consumers and carers prioritise certain notions of illness, recovery and quality of healthcare, and expect healthcare providers to respond to these concerns.

Experience with treatment services for people with bipolar disorder.

OBJECTIVE: To describe the experiences of people with bipolar disorder with primary care and specialist mental health services. DESIGN AND SETTING: Focus groups and indepth interviews were conducted in seven Australian capital cities between July 2002 and April 2003. Thematic analyses were conducted using the QSR NUD*IST software package for qualitative data. PARTICIPANTS: Forty-nine people with bipolar disorder participated in the focus groups and four participated in the interviews. RESULTS: Thematic analyses highlighted eight key themes. Most notably, respondents identified a lack of awareness and understanding about bipolar disorder within the Australian community, which contributed to apparent delays in seeking medical assessment. The burden of illness was exacerbated by difficulties experienced with obtaining an accurate diagnosis and optimal treatment. The healthcare system responses were described as inadequate and included inappropriate crisis management, difficulties accessing hospital care, inappropriate exclusion of carers and families from management decisions, and frequent discontinuities of medical and psychological care. CONCLUSIONS: People with extensive experience of bipolar disorder report barriers to optimal care because of lack of community understanding and healthcare system shortcomings. These barriers exacerbate the social, interpersonal and economic costs of this illness.