Looking back in time: conducting a cohort study of the long-term effects of treatment of adolescent tall girls with synthetic hormones.

OBJECTIVE: Public health research is an endeavour that often involves multiple relationships, far-reaching collaborations, divergent expectations and various outcomes. Using the Tall Girls Study as a case study, this paper will present and discuss a number of methodological, ethical and legal challenges that have implications for other public health research. APPROACH: The Tall Girls Study was the first study to examine the long-term health and psychosocial effects of oestrogen treatment for tall stature. RESULTS: In undertaking this study the research team overcame many hurdles: in maintaining collaboration with treating clinicians and with the women they had treated as girls - groups with opposing points of view and different expectations; using private practice medical records to trace women who had been patients up to forty years earlier; and exploring potential legal issues arising from the collection of data related to treatment. CONCLUSION: While faced with complex challenges, the Tall Girls Study demonstrated that forward planning, ongoing dialogue between all stakeholders, transparency of processes, and the strict adherence to group-developed protocols were keys to maintaining rigour while undertaking pragmatic research. IMPLICATIONS: Public health research often occurs within political and social contexts that need to be considered in the planning and conduct of studies. The quality and acceptability of research findings is enhanced when stakeholders are engaged in all aspects of the research process.

Successful chronic disease care for Aboriginal Australians requires cultural competence.

OBJECTIVE: To review the literature to determine the attributes of culturally appropriate healthcare to inform the design of chronic disease management (CDM) models for Aboriginal patients in urban general practice. METHODS: A comprehensive conceptual framework, drawing on the Access to Care, Pathway to Care, Chronic Care, Level of Connectedness, and Cultural Security, Cultural Competency and Cultural Respect models, was developed to define the search strategy, inclusion criteria and appraisal methods for the literature review. Selected papers were reviewed in detail if they examined a chronic disease intervention for an Aboriginal population and reported on its evaluation, impacts or outcomes. RESULTS: In the 173 papers examined, only 11 programs met the inclusion criteria. All were programs conducted in rural and remote Aboriginal community-controlled health services. Successful chronic disease care and interventions require adequate Aboriginal community engagement, utilising local knowledge, strong leadership, shared responsibilities, sustainable resources and integrated data and systems. These success factors fitted within the conceptual framework developed. CONCLUSIONS: Research and development of culturally appropriate CDM models concurrently in both urban and rural settings will enable more rigorous evaluation, leading to stronger evidence for best practice. A partnership of mainstream and Aboriginal-controlled health services is essential to successfully 'close the gap'. IMPLICATIONS: Findings will inform and guide the development, implementation and evaluation of culturally appropriate CDM in mainstream general practice and primary care.

The medicalisation of 'tall' girls: A discourse analysis of medical literature on the use of synthetic oestrogen to reduce female height.

Endocrine research in the 1930s increased and extended the use of sex hormones as medical therapies in an unprecedented way, especially for female ailments. In the 1950s the therapeutic use of sex hormones extended to the treatment of 'tall' girls. Ambiguity in the definition of the 'tall' girl, the arbitrary nature of the treatment decision, and diversity in the therapeutic regimes highlight the problematic nature of this medical practice. Using linguistic repertoires to study the political and ideological implications found in the patterned use of language, this paper reports on a discourse analysis of the medical literature on treatment of tall girls between the 1950s and 1990s, when this treatment was at its peak. Three linguistic repertoires emerged: the institutional authority of medicine to determine the 'abnormality' of tall stature in females; the clinical knowledge and experience in the diagnosis of medical risk associated with tall stature in women; and using hormones as cosmetic therapy to (re)produce femininity in tall girls. All three related to the maintenance of the cultural representations and social expectations of femininity. With no evidence of psychological harm associated with tall stature in women, and no long-term studies of either effectiveness or benefit, over five decades clinicians persuaded themselves and their patients that tall stature required therapeutic intervention. The treatment of tall girls with high dose oestrogen must be viewed as the medicalisation of a normal physical attribute adversely related to the social construction of gender.

Barriers and facilitators to the utilization of adult mental health services by Australia's Indigenous people: seeking a way forward.

Mental disorders are the second leading cause of disease burden among Australia's Indigenous people after cardiovascular disease. Yet Indigenous people do not access mental health services in proportion to their need. This paper explores the barriers and facilitators for Indigenous people seeking mental health services in Australia and identifies key elements in the development and maintenance of partnerships for improved service delivery and future research. The process of seeking help for mental illness has been conceptualized as four consecutive steps starting from recognizing that there is a problem to actually contacting the mental health service. We have attempted to explore the factors affecting each of these stages. While people in the general population experience barriers across all four stages of the process of seeking treatment for a mental disorder, there are many more barriers for Indigenous people at the stage of actually contacting a mental health service. These include a history of racism and discrimination and resultant lack of trust in mainstream services, misunderstandings due to cultural and language differences, and inadequate measures to reduce the stigma associated with mental illness. Further research is required to understand the mental health literacy of Indigenous people, their different perceptions of mental health and well-being, issues around stigma, and the natural history of mental illness among Indigenous people who do not access any form of professional help. Collaborations between mainstream mental health services and Aboriginal organizations have been promoted as a way to conduct research into developing appropriate services for Indigenous people.

Was it good for you too? Impediments to conducting university-based collaborative research with communities experiencing disadvantage.

OBJECTIVE: Collaborative and participatory research (CPR) models are increasingly recognised as methodologically, ethically and practically appropriate to conducting health and welfare research involving disadvantaged communities. This paper identifies impediments to CPR and proposes measures to support and encourage future CPR in Australian universities. METHODS: This paper draws on a small qualitative study of university-based CPR projects in Melbourne. The study involved a literature review and interviews with 23 participants, comprising university-based researchers and community liaison officers, and community representatives involved in university-based research projects. RESULTS: The paper outlines four main difficulties encountered by university-based researchers and community liaison staff in conducting CPR. These are: managing community sensitivities, the time-consuming nature of the work and diverse tasks involved, difficulty securing adequate research funding, and a concern that CPR was detrimental to academic careers. CONCLUSION: CPR in universities might be supported in the future through providing CPR training for researchers, employing additional community liaison staff, recognising community reports within the Australian research quality evaluation system Excellence in Research for Australia, adopting supportive policies within universities and provision of dedicated CPR funding. IMPLICATIONS: In the current Australian university context of competitive funding, further research into CPR nationally, alongside dedicated resources and policies are required to maximise the benefits of this approach.

Engaging with Aboriginal communities in an urban context: some practical suggestions for public health researchers.

OBJECTIVE: In this paper, one Indigenous and two non-Indigenous public health researchers reflect on our combined experience of over thirty years in Aboriginal health, in order to develop some practical guidelines, particularly for researchers working with urban Indigenous population groups. APPROACH: Public health research is important not only to address the health inequities experienced by Australia's Indigenous populations, but also to build knowledge and confidence and to inform practice in Aboriginal community-controlled health organisations. Ethical guidelines and previous research experience demonstrate that researchers need to engage with the communities that may be involved in or affected by the research they propose. Although more than half of Australia's Aboriginal and Torres Strait Islander population live in urban and regional centres, most research and commentaries address the health and social issues of remote communities. Researchers often do not know how to engage with urban Aboriginal communities and how to approach the particular research challenges within this context. CONCLUSION AND IMPLICATIONS: The practical guidelines suggested in this paper may assist public health researchers to conduct ethical health research that is planned and carried out in a culturally appropriate way and that will benefit urban Aboriginal people. While not intended to be prescriptive, we believe that the lessons learned in Victoria will be applicable to other urban Indigenous contexts around Australia.

Challenging our own practices in Indigenous health promotion and research.

At the 2006 National Conference of the Australian Health Promotion, Maori academic and public health physician Dr Papaarangi Reid challenged us to critique our own practice and asked whether health promotion needs to be de-colonised. In this paper, one Indigenous and two non-Indigenous researchers working within the Aboriginal community controlled health sector reflect on ways in which research and health promotion interventions with Indigenous populations challenge or reinforce the very values that have led to the disadvantage, neglect and apathy experienced by Indigenous populations in the first place. While our practice is framed by the principles of Aboriginal self-determination and community control, we suggest that de-colonising is not so much about the need to invent new research methods nor to search for research methods in traditional Aboriginal culture; it is much more about values, processes and relationships. We recognise the need to challenge the deficit model in health promotion and research, and we do not want to inflict any more damage to the community, through reinforcing stereotypes, creating fear, or contributing to further bad press. We argue for adopting a methodology that shifts power and enables Indigenous people to frame research in ways they want it framed, and for taking a holistic approach and focusing on community strength and resilience.

Oestrogen treatment for tall stature in girls: estimating the effect on height and the error in height prediction.

OBJECTIVE: To determine the effect of oestrogen treatment on attenuating the growth of tall girls after adjusting for error in height prediction. DESIGN: Retrospective cohort study. PATIENTS: Tall girls assessed by Australian paediatric endocrinologists between 1959 and 1993. A total of 279 girls received oestrogen treatment (diethylstilboestrol or ethinyl oestradiol) and 367 girls were assessed but not treated. MEASUREMENTS: Estimated mature height (EMH) was calculated using radiographic assessment of bone age in adolescence. Final adult height was self-reported at follow-up. To control for error in the EMH predictions and their different distributions by treatment status, pairs of treated and untreated girls, matched on EMH within 1 cm, were selected for analysis. Covariate adjusted estimates of treatment effect (final height - EMH) were calculated. RESULTS In the sample of 108 matched pairs, the mean difference between the final height and EMH was -1.4 cm (SE 0.29) in the treated group and 1.1 cm (SE 0.23) in the untreated group, giving an unadjusted treatment effect of -2.5 cm (95% CI -3.2 to 1.8). A regression model based on 107 pairs of treated and untreated girls contained a significant interaction between bone age at treatment initiation and treatment, which estimated an approximately 1 cm per year decrease in treatment effect. The treatment effect was greatest in those commencing treatment at an early bone age and was significant if initiated before a bone age of 15 years. CONCLUSIONS: On average, oestrogen treatment resulted in an adult height that was less than predicted. Although treatment was more effective in the least mature girls, the mean height difference was relatively modest for most treated girls.

Concern about tall stature during adolescence and depression in later life.

OBJECTIVE: This retrospective cohort study aimed to examine the long-term psychosocial outcomes for women assessed or treated during adolescence for tall stature. METHOD: Women assessed or treated for tall stature identified from the records of Australian paediatricians were eligible to participate. Psychosocial outcomes were measured using the depression, mania and eating disorders modules of the Composite International Diagnostic Interview (CIDI), the SF-36, and an index of social support. RESULTS: There was no significant difference between treated and untreated women in the prevalence of 12 month or lifetime major depression, eating disorders, scores on the SF-36 mental health summary scale, or the index of social support. However, compared with the findings of population-based studies, the prevalence of major depression in both treated and untreated tall girls was high (12 month prevalence: untreated 10.7%, treated 11.2%; lifetime prevalence: untreated 29.4%, treated 26.6%). Factors significantly associated with lifetime major depression in this study were self-reported difficulties during adolescence being the reason for seeking a medical assessment of height (OR 2.25, 95% CI 1.4-3.6) and a negative experience of the assessment or treatment procedures (OR 2.04, 95% CI 1.4-3.0). CONCLUSION: Long-term follow-up of a large cohort of tall girls showed that psychological outcomes among both treated and untreated women were poor and that the intended psychosocial benefit of treatment may not have been realized. The findings highlight the importance of attending to the mental health of adolescents presenting for management of conditions where self-concept and body image are a primary focus.

Using hormone treatment to reduce the adult height of tall girls: are women satisfied with the decision in later years?

Treatment with synthetic oestrogens to reduce adult height has been available for tall girls since the 1950s. Treatment aims to reduce psychosocial problems associated with tall stature that might occur in adolescence or adulthood, but little is known about the long-term outcomes. This retrospective cohort study identified 1248 eligible women from the medical records of Australian paediatricians who assessed or treated tall girls between 1959 and 1993, and 184 women from self-referrals. They included girls who received oestrogen treatment (diethylstilbestrol or ethinyl estradiol) in adolescence (treated group) and those who had been assessed but did not receive treatment (untreated group). A total of 1243 (86.8%) women were traced and invited to participate in the study, and 67.9% of these women (396 treated and 448 untreated) agreed. This paper reports on women's satisfaction with the decision that was made to have treatment to reduce their adult height. In a postal questionnaire women were asked to comment on a range of issues including how they felt about their current height, the assessment and treatment procedures, and the decision whether or not to have treatment. While untreated women were almost unanimously glad they were not treated (99.1%), no matter how tall they became, 42.1% of the treated women expressed dissatisfaction with the decision that was made. There was no clear association between satisfaction with treatment and the women's final height. However, dissatisfaction was related to: (a) whether or not the girls had an active say in the decision-making; (b) to negative experiences of the assessment or treatment procedures; (c) to side effects experienced during the treatment period; and (d) to later side effects women believed were associated with the treatment. The study finds that qualitative analysis of comments made by treated women helps to explain their dissatisfaction with the decision to have treatment.

Oestrogen treatment to reduce the adult height of tall girls: long-term effects on fertility.

BACKGROUND: Treatment with oestrogen to reduce the adult height of tall girls has been available since the 1950s. We undertook a retrospective cohort study to assess the long-term effects of this treatment on fertility. METHODS: Eligible participants were identified from the records of Australian paediatric endocrinologists who assessed tall girls from 1959 to 1993, and from self-referrals. Individuals included girls who had received oestrogen treatment (diethylstilboestrol or ethinyl oestradiol) (treated group) and those who were assessed but not treated (untreated group). Information about reproductive history was sought by telephone interview. FINDINGS: 1432 eligible individuals were identified, of whom 1243 (87%) could be traced. Of these, 780 (63%) completed interviews: 651 were identified from endocrinologists' records, 129 were self-referred. Treated (n=371) and untreated (n=409) women were similar in socioeconomic and other characteristics. After adjustment for age, treated women were more likely to have ever tried for 12 months or more to become pregnant without success (relative risk [RR] 1.80, 95% CI 1.40-2.30); more likely to have seen a doctor because they were having difficulty becoming pregnant (RR 1.80, 1.39-2.32); and more likely to have ever taken fertility drugs (RR 2.05, 1.39-3.04). Time to first pregnancy analysis showed that the treated group was 40% less likely to conceive in any given menstrual cycle of unprotected intercourse (age-adjusted fecundability ratio 0.59, 95% CI 0.46-0.76). These associations persisted when self-referred women were excluded. INTERPRETATION: High-dose oestrogen treatment in adolescence seems to reduce female fertility in later life. This finding has implications for current treatment practices and for our understanding of reproductive biology.

Validation of qualitative research in the "real world".

In this article, the author takes up the debate about the usefulness of the concept of validity in qualitative research and acknowledges the critical role of the researcher as an "instrument" in the research process. Qualitative research, and the process of analysis in particular, involves continuous reflexivity and self-scrutiny. Balancing the need for creativity and rigor, the qualitative researcher can experience uncertainty, particularly in relation to small numbers. The author describes steps that she and a colleague took to ensure the validity and accuracy of the findings in a qualitative study of female sex workers. She discusses specific challenges in relation to the validity of their interpretation and describes two unexpected and serendipitous validity checks that served as affirmation.

A commentary on the NH&MRC Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research.

In this paper, we discuss and critically evaluate the National Health and Medical Research Council's recently released document entitled 'Draft Values and Ethics in Aboriginal and Torres Strait Islander Health Research'. We provide a brief account of its development, philosophy and contents, and then consider how the document could be used by HRECs. We recommend that three specially targeted documents be developed from this one document, to meet the particular needs of HRECs, Indigenous people and researchers. We propose a system of Indigenous ethics advisors as a way to implement the central ideas of the new draft guidelines, without falling into the legalism and rule-following that these guidelines explicitly aim to avoid.

Working together to reduce health inequalities: reflections on a collaborative participatory approach to health research.

With mounting evidence that health problems are related to social inequalities, health researchers increasingly need to engage with disadvantaged and marginalised groups. These groups can present specific challenges to conventional research method. This paper reflects on the need for health researchers to meet these challenges in order to gain a deeper understanding of the ways in which social disadvantage affects people's health, and to develop appropriate interventions for those groups. Models of collaborative, participatory and action research are defined on a continuum. The value of a collaborative participatory approach to health research is discussed. Key processes in collaboration are outlined, and some of the methodological tensions and ethical issues that arise when using such an approach are addressed. The recognition that power is directly related to knowledge lies at the heart of the collaborative participatory research project. Collaborative participatory research offers a strategy that embraces self-determination, encourages and even demands ongoing consultation and negotiation, and provides opportunities for capacity-building and empowerment in the communities involved in the research. Nowhere is such a strategy more needed in Australia today than for research with Indigenous communities.