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Strategies to promote better outcomes in young people with chronic illnesses.

INTRODUCTION: This paper aims to provide an overview of chronic illness and disability in young people, focusing on the developmental needs of young people and the impact of chronic illness on adolescence. The emotional well-being of the young person with chronic illness is explored and strategies that promote better health outcomes for the young person through health, family and school settings are discussed. METHODS: Literature was searched using Medline from 1980 to 2002 using the keywords chronic illness, chronic disease, disability, psychological, social, outcomes and transition. Articles were also hand searched from retrieved articles. CONCLUSIONS: Young people with chronic illness have the same developmental needs as other adolescents. Traditional health care is focused on disease outcomes; however, young people do not necessarily share the same focus. Improving health outcomes for young people involves health professionals having an understanding of adolescent development and broadening the medical perspective to incorporate the developmental perspective. Building competence in young people with chronic illness, strengthening connectedness within the family, school and peer group and building the capacity of the health care team in different settings will provide opportunities to enhance resilience in young people with chronic illness. In doing so, their health outcomes will hopefully also be improved.

Adaptation, Psychological↗

Grassroots research: how to have a stab at your first project and succeed.

BACKGROUND: Current initiatives are aimed at building the capacity within Australian primary care to undertake high quality research and evaluation, including clinicians who are not primarily researchers. OBJECTIVE: To provide a simple guide to encourage practice based research projects. TIPS AND ADVICE: Be parsimonious with the amount of data collected, ensure the literature is searched first, keep the project as simple as possible, invest time in planning and managing the project, readily ask for help and advice, and make every effort to publish the results. DISCUSSION: A modest, carefully supported and systematic approach is recommended for increasing the chance of success and quality of the research.

Biomedical Research↗

Making room for citizens at the public policy table.

Citizen engagement is a critical factor in determining whether devolution, which shifts responsibility for decision-making from the federal to state and local levels, is a success. Devolved policies and decisions will be more effective when the community members they affect are involved in making them. This article presents six lessons from a citizen-focused project conducted in two communities over two years on what it takes to get and keep citizens involved in the policy process. This project showed that, when applied, these lessons will inspire community members to get involved, create the relationships needed to sustain their involvement over time, and build their capacity to understand and problem solve around complex policy issues.

Community Participation↗

Learning to work together: developing academic and community research partnerships.

BACKGROUND: Community-based participatory research (CBPR) has been promoted as an important collaborative methodology for addressing local health concerns. However, academic physicians and researchers usually are not trained to work with communities as partners. METHODS: Key characteristics of effective community-academic partnerships are examined based on experiences with 2 CBPR projects in Wisconsin. RESULTS: These 2 projects increasingly have involved the respective communities and researchers in a collaboration. The steps they have taken illustrate the qualities of successful CBPR partnerships: ongoing development of joint community and researcher analysis, communication, and mobilization to search for relevant solutions to important community health problems. To sustain this kind of partnership, it is critical for researchers using the CBPR approach to understand how their academic-scientific perspective differs as well as converges with the community members' practical-experiential perspective. CONCLUSIONS: Health care researchers can effectively make use of partnerships with communities by following defined CBPR steps for developing mutually agreed upon research agendas, timelines, and goals. This, in turn, builds the capacity of communities to initiate and engage in future collaborative research projects concerning health issues.

Academic Medical Centers↗

Indigenous NGO involvement in TB treatment programmes in high-burden settings: experiences from the Northern Cape province, South Africa.

Effective tuberculosis (TB) treatment delivery in high-burden countries increasingly requires a multisectoral approach. This paper examines the role two local non-governmental organisations (NGOs) play in TB care delivery in a high-burden setting, the Northern Cape province, South Africa. NGOs played a complementary role to the formal health sector in effecting TB treatment delivery by training facilitators and recruiting and training lay volunteers for directly observed treatment. One key challenge was the paucity of systematised information to enable rigorous evaluation of the effectiveness of NGO contribution, which led to inadequate funding, as potential donors were sceptical about supporting activities whose value they could not assess. In high disease burden settings, where auxiliary actors can play useful roles in effective service delivery, it is important for NGOs to document and self-evaluate their role. One way of building this capacity is through technical support by government and development partners.

Antitubercular Agents↗

A paediatric and perinatal HIV/AIDS leadership initiative in Kingston, Jamaica.

BACKGROUND AND PURPOSE: In Jamaica 1-2% of pregnant women are HIV-positive; 876 HIV-positive pregnant women will deliver and at least 283 newly infected HIV-infected infants will be born in 2003; HIV/AIDS is the leading cause of death in children aged one to four years. We describe a collaborative "Town and Gown" programme to address the paediatric and perinatal HIV epidemic in Kingston. METHOD: A team of academic and government healthcare personnel, comprising paediatricians, obstetricians, public health practitioners, nurses, microbiologists, data management and information technology personnel collaborated to address this public health emergency. RESULT: A five-point plan was implemented This comprised leadership and training of a core group of paediatric/perinatal HIVprofessionals to serve Greater Kingston and St Catherine and be a model for the rest of Jamaica. Mother-to-child transmission of HIV/AIDS is prevented by counselling and HIV-testing women in the antenatal clinics, giving azidothymidine (AZT) to HIV pregnant women beginning at 28 weeks gestation, throughout labour and to the HIV-exposed infants for the first six weeks of life. A unified parallel programme for identifying the HIV-infected infant and delivering paediatric HIV care at the major paediatric centres was implemented In three years, over 30,000 pregnant women are being tested for HIV; 600 HIV-exposed babies are being identified and about 140 paediatric HIV infections will be prevented The team is building research capacity which emphasizes a strong outcomes-based research agenda and implementation of clinical trials. We are collaborating, locally, regionally and internationally. CONCLUSION: Collaboratively, the mission of reducing mother-to-child transmission of HIV/AIDS and improving the quality of life for those already living and affected by HIV/AIDS can be achieved.

Acquired Immunodeficiency Syndrome↗

The Boston Haitian HIV Prevention Coalition formative evaluation: a participatory approach to community self-assessment.

This article describes the application of participatory evaluation principles and methods to designing and conducting a community survey of the metropolitan Boston Haitian population. The findings of the evaluation baseline community survey of 2,719 Haitians are described, including an overview of the population characteristics and the prevailing HIV prevention knowledge, attitudes, and practices. The participatory evaluation approach was effective in building evaluation capacity, and provided a reliable data source with which to fine-tune the prevention intervention, and increase its efficacy in reducing HIV transmission.

Adult↗

Cancer in Pohnpei State, Federated States of Micronesia.

A cancer needs assessment, funded by the National Cancer Institute, was conducted in Pohnpei State (Pohnpei), Federated States of Micronesia (FSM). Findings revealed that cancer is the third leading cause of death in Pohnpei, yet cancer-related awareness, prevention, detection, and treatment services are limited. A number of needs were identified, and an action plan was developed based on five priority areas: 1) increasing community awareness about cancer (especially, cervix, breast, liver and lung) and related risk factors; 2) securing funding for cancer prevention and control planning and activities; 3) establishing a fully staffed cancer prevention and control office; 4) building local capacity for cancer cytology; and 5) increasing capacity to obtain and process lab specimens for high-risk patients.

Delivery of Health Care↗

Need for dedicated focus on urban health within National Rural Health Mission.

National Rural Health Mission represents an important public health initiative to address essential health needs of the country's underserved population. For the Mission to achieve its goals, urban population needs to be included in its scope. Urban poor population constitutes nearly a third of India's urban population and is growing at three times the national population growth rate. Health status and access of reproductive and child health services of slum dwellers are poor and comparable to the rural population. Efforts to improve the conditions of urban poor necessitate strengthening national policy and fiscal mandate, augmenting and strengthening the urban health delivery system, coordinating among multiple stakeholders, involving private sector, strengthening municipal functioning and building community capacities. National Rural Health Mission should be broadened to National Public Health Mission. This paper discusses issues pertaining to health conditions of the urban poor, present status of services, challenges and suggests options for NRHM to bridge the large gap.

Health Services Accessibility↗

Challenges of maternal mortality reduction and opportunities under National Rural Health Mission--a critical appraisal.

Maternal Mortality Ratio (MMR) continues to remain high in our country without showing any declining trend over a period of two decades. The proportions of maternal deaths contributed by direct obstetric causes have also remained more or less the same in rural areas. There is a strong need to improve coverage of antenatal care, promote institutional deliveries and provide emergency obstetric care. Delays occur in seeking care for obstetric complications and levels of 'met obstetric need' continue to be low in many parts of the country. Most of the First Referral Units (FRUs) and CHCs function at sub-optimal level in the country. National Rural Health Mission (NRHM) offers institutional mechanism and strategic options to reduce high MMR. 'Janani Suraksha Yojna', strengthening of CHCs (as per Indian Public Health standards) to offer 24 hours quality services including that of anesthetists and Accredited Social Health Activist (ASHA) are important proposals in this regard. District Health Mission can play an important role in monitoring maternal deaths occurring in hospitals or in community and thus create a social momentum to prevent and reduce maternal deaths. NRHM, however, depends largely on Panchayati Raj Institutions for effective implementation of proposed interventions and utilization of resources. In most parts of our country, State Governments have not empowered PRIs with real devolution of power. Therefore, much needs to be done locally to build the capacity of PRIs and develop state-specific guidelines in operational terms to implement interventions under NRHM for reducing maternal mortality ratio.

Community Health Workers↗

How the response to the epidemic of HIV infection has strengthened the public health system.

Since acquired immunodeficiency virus (AIDS) was first identified in 1981, it has become one of the leading causes of death in men and women 25-44 years of age in the United States. The urgent public health response to the human immunodeficiency virus (HIV) and AIDS epidemic has required the development of new prevention programs; these efforts have significantly strengthened the public health system itself. A major part of CDC's mission is to prevent HIV infection and reduce the incidence of HIV-associated illness. In fighting HIV infection and AIDS, as in all successful public health programs, CDC has four important goals: (a) to assess risks, (b) to develop prevention technologies, (c) to build prevention capacities, and (d) to implement prevention programs. The urgency of the need to prevent HIV infection and AIDS has in many instances added impetus or substance to programs already under way, as well as prompting the development of new initiatives to meet the four goals. Examples of ways in which the public health system has benefited from HIV-related programs and activities are detailed in this article. Although the HIV epidemic has created significant stresses in many areas of public health and medical services, the experience gained in dealing with this epidemic will strengthen the nation's response to other health crises that arise. Despite the huge challenges, lessons learned thus far provide direction and hope for the future.

Centers for Disease Control and Prevention, U.S.↗

Research for Change: the role of scientific journals publishing mental health research.

There is an enormous gap between the burden of mental disorders and mental health resources in low- and middle-income countries. The Mental Health: Global Action Programme of the World Health Organization (WHO) envisions an active role for research in the multidimensional efforts required to change the current mental health situation in these countries (Research for Change). WHO's strategies to achieve this include developing a research policy and a priority agenda at country level with active collaboration from all stakeholders, building research capacity and infrastructure and involving scientific journals to stimulate and disseminate public health oriented research. A recently agreed joint statement by editors of prominent journals publishing mental health research and WHO sets major objectives and some possible strategies for achieving this. WHO is committed to making Research for Change a reality by working with partners who share this aim.

Journal Article↗

The Great Lakes Regional Stroke Network experience.

Stroke is a leading cause of disability and the third leading cause of death among adults in the United States and in the Great Lakes states of Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin. The Great Lakes Regional Stroke Network was created to enhance collaboration and coordination among the Great Lakes states to reduce the burden of stroke and stroke-related disparities associated with race, sex, and geography. Three priorities were identified for reducing the effects of stroke in the Great Lakes region: 1) build epidemiologic capacity to improve stroke prevention and control efforts, 2) facilitate systems-level changes and collaborative efforts to improve acute stroke care and rehabilitation, and 3) promote awareness of the warning signs of stroke and the need to call 911. The Great Lakes Regional Stroke Network has work groups in the areas of epidemiology and surveillance, health care quality improvement, and public education. These groups recommend initiatives to states for their efforts to reduce the effects of stroke within the Great Lakes region. Examples of recommended initiatives include identifying and prioritizing state research evaluation needs for stroke, conducting a stroke education media campaign, and developing a statewide emergency medical services protocol for stroke.

Centers for Disease Control and Prevention, U.S.↗

[Capacity of monitoring system on birth defects during 1990s in China].

OBJECTIVE: To understand the status and capacity of monitoring system on birth defects in China. METHODS: Data regarding 27 groups of birth defects from 57 monitoring programs in World Atlas of Birth Defects (2nd Edition) published by WHO/ICBDMS/EUROCAT/HGP and descriptive analysis by their ranking and contribution were carried out. RESULTS: Both hospital-based (Chinese Birth Defects Monitoring Network, CBDMN) and population-based (Birth Defect Surveillance System in Thirty Counties of Four Provinces, Beijing) monitoring systems showed the same characteristics as below: (1) Not enough groups were monitored, with trisomy 13/18 and congenital heart disease not reported. (2) Prevalence on those 'easily observed' group was high and cleft lip with or without cleft palate in CBDMN ranked 5 among 57 programs, with similar situation in polydactyly. (3) While prevalence rates of internal system and choromosal anomaly were low, CBDMN ranked 56 with Beijing the only non-reported city among all the 57 programs. (4) Unreasonable relationship was seen with prevalence of cleft lip was 5.76,4.02 times higher than that of cleft palate in CBDMN and in Beijing program. Which was 1.58 times of the world's means. Prevalence rates of anencephaly and total anotia/microtia rose 10.39% while spina bifida, hydrocephaly, and gastroschisis had a 4%-5% increase. The prevalence of hypospadias decreased by 4.13% and Down syndrome by 3.02%. CONCLUSION: The capacity of birth defects monitoring, both hospital-based and population-based, was poor in the 1990s, in China.

Capacity Building↗

Lessons from SARS in an age of emerging infections.

SARS, the first pandemic of this century, commanded the world's attention and required public health actions at the national and international levels. In an age of emerging infections, the lessons learnt from combating SARS can be used to improve our preparedness capabilities in three key areas to effectively tackle a public health emergency of international concern. The first area is in outbreak alert, which encompasses use of surveillance to detect, assess, notify and report events involving death or disease, and share information widely to enable proper risk assessment. The system must able to build up a comprehensive picture with appropriate warning for zoonotic diseases, environmental health and food safety. The second area is in public health response. In the event of an outbreak alert, the authorities must be able to quickly investigate cases/deaths and institute comprehensive control measures to break the chain of transmission. Protection of healthcare workers and reducing the opportunities for spread of infection through contact tracing and quarantine are important. The third area is in international health. This comprises health requirements for inbound and outbound travellers at the border checkpoints and global information exchange to mitigate the risks of travel abroad. Extrapolating these lessons to a wider public health context, our rapidly changing global infectious diseases situation mandates that we evaluate all available public health tools and build institutional capacity to effectively manage emerging infections.

China↗