понедельник, 8 октября 2012 г.

Pfizer Animal Health And American Humane Association Partner To Conduct Research On The Power Of The Human-Animal Bond In Pediatric Cancer Patients. - Veterinary Week

Pfizer Animal Health and American Humane Association announced a partnership to conduct a study on the impact of animal-assisted therapy on pediatric oncology patients, as well as on their parents, caregivers, siblings, and other close family members.

The partnership - which includes a $282,000 grant from Pfizer and the Pfizer Foundation - exemplifies the strategic goal of both organizations to better quantify in clinical terms what many in health care already realize as the extraordinary power of the human-animal bond.

'This important research will measure the impact of animal-assisted therapy on pediatric oncology patients and their families, thus furthering the fields of research on human-animal interaction and integrated therapies for conditions such as cancer in children,' said J. Michael McFarland, DVM, Diplomate ABVP and Group Director of Veterinary Medical Services & Corporate Citizenship for Pfizer Animal Health. 'We are proud to be part of the work that American Humane Association is doing - showing the far-reaching benefits of pets to our society.'

This partnership with American Humane Association's Child Protection Research Center and Animal-Assisted Therapy Program is an example of the Pfizer Animal Health Commitment to Veterinarians platform - which addresses the many challenges facing the veterinary profession through training and education, research and development, investing in the future, philanthropic efforts and the development of understanding around the human-animal bond.

Over the next three years, American Humane Association and Pfizer Animal Health will work with a total of 150 children at up to five hospitals or clinical settings throughout the United States that treat children with cancer. Researchers will examine the medical, behavioral and mental health benefits of animal-assisted therapy to quantify the effect on the family as a whole.

'Anyone who has ever seen a child turn to her pet for solace during a difficult time knows that a beneficial interaction is taking place there,' said Robin R. Ganzert, Ph.D., president and chief executive officer of American Humane Association. 'Our goal is to fully understand, from a scientific perspective, what is happening in these types of interactions with children undergoing cancer treatment. The question we are looking to answer is: In what ways can animal-assisted therapy improve the health and well-being of children - and their families - in their fight against cancer?'

Pfizer Animal Health also has recently become a Founding Partner in HABRI (Human Animal Bond Research Initiative) Foundation, which will deliver data, a central hub of research, awareness and evidence-based education about the impact of the human-animal bond. And, in 2009, Pfizer Animal Health funded a study to be completed this year that will formally measure clinical outcomes from therapy dog interactions with adult patients in inpatient oncology treatment and outpatient chemotherapy infusion settings. The study is being led by the Good Dog Foundation at the Continuum Cancer Centers of New York at Beth Israel Medical Center. Pfizer Inc.: Working together for a healthier world™ At Pfizer, we apply science and our global resources to improve health and well-being at every stage of life. We strive to set the standard for quality, safety and value in the discovery, development and manufacturing of medicines for people and animals. Our diversified global health care portfolio includes human and animal biologic and small molecule medicines and vaccines, as well as nutritional products and many of the world's best-known consumer products. Every day, Pfizer colleagues work across developed and emerging markets to advance wellness, prevention, treatments and cures that challenge the most feared diseases of our time. Consistent with our responsibility as the world's leading biopharmaceutical company, we also collaborate with health care providers, governments and local communities to support and expand access to reliable, affordable health care around the world. For more than 150 years, Pfizer has worked to make a difference for all who rely on us. To learn more about our commitments to animal health, please visit us at www.pfizerAH.com. About American Humane Association Since 1877, the historic American Humane Association has been at the forefront of virtually every major advancement in protecting children, pets and farm animals from cruelty, abuse and neglect. Today we're also leading the way in understanding human-animal interaction and its role in society. As the nation's voice for the protection of children and animals, American Humane Association reaches millions of people every day through groundbreaking research, education, training and services that span a wide network of organizations, agencies and businesses. You can help make a difference, too. Visit American Humane Association at www.americanhumane.org today.

Photos/Multimedia Gallery Available: http://www.businesswire.com/cgi-bin/mmg.cgi?eid=6719252&lang=en

Keywords: Oncology, Pediatric Cancers, Pediatric Carcinomas, Pediatrics, Pfizer Inc., Veterinary Research.

воскресенье, 7 октября 2012 г.

PFIZER ANIMAL HEALTH AND AMERICAN HUMANE ASSOCIATION PARTNER TO CONDUCT RESEARCH ON THE POWER OF THE HUMAN-ANIMAL BOND IN PEDIATRIC CANCER PATIENTS. - States News Service

MADISON, N.J. -- The following information was released by the American Humane Association:

Pfizer Animal Health and American Humane Association today announced a partnership to conduct a study on the impact of animal-assisted therapy on pediatric oncology patients, as well as on their parents, caregivers, siblings, and other close family members.

The partnership -- which includes a $282,000 grant from Pfizer and the Pfizer Foundation -- exemplifies the strategic goal of both organizations to better quantify in clinical terms what many in health care already realize as the extraordinary power of the human-animal bond.

'This important research will measure the impact of animal-assisted therapy on pediatric oncology patients and their families, thus furthering the fields of research on human-animal interaction and integrated therapies for conditions such as cancer in children,' said J. Michael McFarland, DVM, Diplomate ABVP and Group Director of Veterinary Medical Services and Corporate Citizenship for Pfizer Animal Health. 'We are proud to be part of the work that American Humane Association is doing -- showing the far-reaching benefits of pets to our society.'

This partnership with American Humane Association's Child Protection Research Center and Animal-Assisted Therapy Program is an example of the Pfizer Animal Health Commitment to Veterinarians platform -- which addresses the many challenges facing the veterinary profession through training and education, research and development, investing in the future, philanthropic efforts and the development of understanding around the human-animal bond.

Over the next three years, American Humane Association and Pfizer Animal Health will work with a total of 150 children at up to five hospitals or clinical settings throughout the United States that treat children with cancer. Researchers will examine the medical, behavioral and mental health benefits of animal-assisted therapy to quantify the effect on the family as a whole.

'Anyone who has ever seen a child turn to her pet for solace during a difficult time knows that a beneficial interaction is taking place there,' said Robin R. Ganzert, Ph.D., president and chief executive officer of American Humane Association. 'Our goal is to fully understand, from a scientific perspective, what is happening in these types of interactions with children undergoing cancer treatment. The question we are looking to answer is: In what ways can animal-assisted therapy improve the health and well-being of children -- and their families -- in their fight against cancer?'

Pfizer Animal Health also has recently become a Founding Partner in HABRI (Human Animal Bond Research Initiative) Foundation, which will deliver data, a central hub of research, awareness and evidence-based education about the impact of the human-animal bond. And, in 2009, Pfizer Animal Health funded a study to be completed this year that will formally measure clinical outcomes from therapy dog interactions with adult patients in inpatient oncology treatment and outpatient chemotherapy infusion settings. The study is being led by the Good Dog Foundation at the Continuum Cancer Centers of New York at Beth Israel Medical Center.

Pfizer Inc.: Working together for a healthier world(TM)

At Pfizer, we apply science and our global resources to improve health and well-being at every stage of life. We strive to set the standard for quality, safety and value in the discovery, development and manufacturing of medicines for people and animals. Our diversified global health care portfolio includes human and animal biologic and small molecule medicines and vaccines, as well as nutritional products and many of the world's best-known consumer products. Every day, Pfizer colleagues work across developed and emerging markets to advance wellness, prevention, treatments and cures that challenge the most feared diseases of our time. Consistent with our responsibility as the world's leading biopharmaceutical company, we also collaborate with health care providers, governments and local communities to support and expand access to reliable, affordable health care around the world. For more than 150 years, Pfizer has worked to make a difference for all who rely on us. To learn more about our commitments to animal health, please visit us at www.pfizerAH.com.

About American Humane Association

Since 1877, the historic American Humane Association has been at the forefront of virtually every major advance in protecting children, pets and farm animals from cruelty, abuse and neglect. Today we're also leading the way in understanding human-animal interaction and its role in society. As the nation's voice for the protection of children and animals, American Humane Association reaches millions of people every day through groundbreaking research, education, training and services that span a wide network of organizations, agencies and businesses. You can help make a difference, too. Visit American Humane Association at www.americanhumane.org today.

суббота, 6 октября 2012 г.

Research from University of Calgary, Department of Community Health Sciences yields new data on pediatric in children. - Health & Medicine Week

Investigators publish new data in the report 'A community-based physical activity program for adolescents with cancer (project TREK): program feasibility and preliminary findings.' According to recent research from Calgary, Canada, 'As the number of pediatric survivors continues to grow, a greater emphasis is being placed on identifying long-term health risk/protecting behaviors. The primary purpose of this pilot study was to examine the feasibility of a theoretically-based physical activity (PA) intervention in adolescents with cancer.'

'A group PA intervention was administered to participants over 16 weeks. Program attendance/adherence, total PA, physical fitness, and quality of life (QOL) were assessed at 5 different intervals over the 1-year study duration. Over a period of 6 weeks, 11 adolescents responded to recruitment efforts. Ten ultimately enrolled and completed the 1-year study. Overall, the program was well received with attendance over the 16-week intervention averaging 81.5%. Although improvements in total PA, physical fitness, and QOL were noted across the intervention, follow-up data revealed that participants failed to maintain their postintervention PA levels at both the 3 and 12-month follow-up assessments. Adolescents with a history of cancer are undoubtedly susceptible to the same maladaptive health habits as are their healthy peers. Innovative interventions aimed at improving their adherence to positive behavioral interventions, such as PA are warranted,' wrote M.R. Keats and colleagues, University of Calgary, Department of Community Health Sciences (see also Life Sciences).

The researchers concluded: 'Although not without limitations, this study provides preliminary data in support of a university-sponsored PA intervention.'

Keats and colleagues published their study in the Journal of Pediatric Hematology (A community-based physical activity program for adolescents with cancer (project TREK): program feasibility and preliminary findings. Journal of Pediatric Hematology, 2008;30(4):272-80).

For additional information, contact M.R. Keats, University of Calgary, University of Calgary, Dept. of Community Health Sciences, Calgary, Canada.

Publisher contact information for the Journal of Pediatric Hematology is: Lippincott Williams & Wilkins, 530 Walnut St., Philadelphia, PA 19106-3621, USA.

Keywords: Canada, Calgary, Life Sciences, Pediatric Hematology, Cancer, Oncology, Quality of Life, Exercise, Physical Fitness, Community Health, Behavior.

пятница, 5 октября 2012 г.

Level-of-care guidelines: interview with Lollie Dubiel, director of Behavioral Health, Mickesson Health Solutions. (Cover Story). - Behavioral Health Management

Level-of-care guidelines--prompting clinicians in making admisision and referral decisions up and down the healthcare continuum--are not new. The American Society of Addiction Medicine has been publishing them for years. What's more, a private firm--McKesson Corporation, a large pharmaceutical management and information technology company--has issued practice guidelines under the InterQual brand for a quarter century. It has only been in the last two years, though, that McKesson has made such algorithms available for behavioral healthcare. It introduced in 2000 criteria marketed under the InterQual brand for guiding adult mental health and substance abuse management decisions. Since then, McKesson Health Solutions has added instruments for managing adolescent and pediatric care. Geriatric and residential adolescent offerings are in development, with the former set to be released this fall. Recently Lollie Dubiel, director of behavioral health for the company's medical management group, discussed with Behavioral Health Management Editorial Director Richard L. Peck the concept of automated decision support and how it works.

Peck: Would you describe the InterQual Behavioral Health Criteria tool?

Dubiel: It is a decision-support tool using evidence-based, level-of-care criteria derived from the literature, nationwide clinical expertise and feedback from clients.

Peck: What does 'evidence-based' mean in this context?

Dubiel: Every year our staff submits to a national panel of experts-psychiatrists, psychiatric nurses, psychologists, pediatricians, teachers and social workers--proposed criteria revisions based on a literature review. Based on the panel's feedback and recommendations, the basic decision-support algorithms for the particular behavioral health criteria set are revised.

Peck: How do these algorithms work?

Dubiel: They are designed to guide the clinician in decision making from the initial assessment, to referral to appropriate level of care, to review of the appropriateness of continuing at that level, to referring the client up or down the continuum, to discharge. They do this with a series of linked questions and recommendations branching from the answers. For example, upon initial contact with a patient complaining of mental health symptoms, the decision tree raises the question of whether this patient is at immediate or potential safety risk. Based on the user's input, the algorithm might identify the patient as being at immediate risk and recommend hospitalization. If the algorithm identifies the patient as being potentially at risk, a series of prompts guides the clinician toward appropriate placement. In a case in which a patient presents with chemical dependency, an initial question would be whether the user is at severe, moderate or no risk of withdrawal. Again, the algorithm would recommend the most appropriate level of care.

Peck: For which caregivers and in what format are these programs available?

Dubiel: The hands-on users of these guidelines are typically care managers in a managed care organization (MCO). However, hospitals have used them for team clinical review meetings or in their clinical assessment centers. The criteria are available in a browser-based version under the name CareEnhance Review Manager, which is HIPAA-enabled to protect privacy, or in book form.

Peck: What kind of outcomes can you cite from the use of these instruments?

Dubiel: One example is of an MCO with 2.2 million covered lives that began using the Adult Psychiatric guidelines when they were introduced in 2000. The MCO reported about a 5% reduction in overall utilization in the first six months.

Peck: What kind of return on investment (ROI) might the user expect from this approach to level-of-care decision making?

Dubiel: In assessing ROI, there are three issues that the typical MCO looks at: First, there is usually significant variation among its clinicians with regard to clinical decision making. Many have different patient care philosophies and worldviews. Particularly on the mental health side, various caregiving professionals are involved with decision making-physicians, nurses, social workers, psychologists, each group with its own particular take on the situation. Use of decision-support criteria can help standardize the decision making while still providing a patient-specific approach based on the individual's presentation.

Second, if variations continue between clinicians' decision making and the established criteria, this might show that network expansion or other quality initiatives are in order. Or, it could demonstrate the cost savings that could be achieved by using the criteria appropriately.

Third, many plans experience a savings of clinical reviewer resources because of the increased efficiency of the review process itself.

In general, level-of-care criteria offer a way to break away from lockstep reauthorization of fixed amounts of days of care, such as renewals of seven-day inpatient stays. Clinicians now have guidelines for deciding whether the more appropriate referral might be partial hospitalization, or an intensive outpatient or outpatient setting, according to evidence-based clinical criteria.

Peck: Are there specific advantages to an automated format?

Dubiel: Having the criteria in an interactive, browser-based application enables organizations to gather data and produce useful management reports to identify any areas where they can improve care management processes. Well-designed software allows for flexible use of data and daily, monthly, quarterly and yearend reporting. Another major advantage of automation is its impact on workflow. Our program, for example, prompts staff on days when patient follow-up should occur and finds the necessary clinical review data for that patient to expedite the evaluation. Also, well-designed software should have a security function built in to help with HIPAA compliance.

Recent Findings from Oregon Health & Science University Highlight Research in Pediatric Research. - Pediatrics Week

Fresh data on Pediatric Research are presented in the report 'Apolipoprotein E4 and sex affect neurobehavioral performance in primary school children.' 'Apolipoprotein E4 (apoE4) and female sex are risk factors for developing Alzheimer's disease. It is unclear whether apoE4 contributes to behavioral function at younger ages,' investigators in the United States report.

'Standard neuropsychological assessments [intelligence quotient (IQ), attention, and executive function] and a test developed in this laboratory (Memory Island test of spatial learning and memory) were used to determine whether E4 and sex affect neuropsychological performance in healthy primary school children (age 7-10). A medical history was also obtained from the mother to determine whether negative birth outcomes were associated with apoE4. Mothers of apoE4+ children were more likely to report that their newborn was placed in an intensive care unit. A sex difference in birth weight was noted among apoE4-(males >females), but not apoE4+, offspring. Conversely, among apoE4+, but not apoE4-children, there was a sex difference in the Wechsler Abbreviated Scale of Intelligence (WASI) vocabulary score favoring boys. ApoE4-girls had better visual recall than apoE4+ girls or apoE4-boys on the Family Pictures test. Finally, apoE4+, unlike apoE4-, children did not show spatial memory retention during the Memory Island probe trial,' wrote S.F. Acevedo and colleagues, Oregon Health & Science University.

The researchers concluded: 'Thus, apoE4 may affect neurobehavioral performance, particularly spatial memory, and antenatal health decades before any clinical expression of neurodegenerative processes.'

Acevedo and colleagues published their study in Pediatric Research (Apolipoprotein E4 and sex affect neurobehavioral performance in primary school children. Pediatric Research, 2010;67(3):293-9).

For additional information, contact S.F. Acevedo, Oregon Health & Science University, Dept. of Behavioral Neuroscience, Portland Oregon 97239 USA.

Keywords: State:Portland, Country:United States, Apolipoproteins, Apoproteins, Lipoproteins, Pediatric Research, Pediatrics.

четверг, 4 октября 2012 г.

Studies in the area of pediatric in children reported from National Institute of Child Health and Human Development. - Diabetes Week

Current study results from the report, 'A multisite trial of a clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: feasibility and design,' have been published. 'The feasibility of a family-based clinic-integrated behavioral intervention to improve family management of type 1 diabetes was evaluated. In each of four clinical sites, 30-32 families (a total of 122) were randomized to intervention or usual care comparison groups,' researchers in the United States report (see also Life Sciences).

'The WE*CAN intervention, based on family problem-solving methods, was delivered during three routine clinic visits by trained 'Health Advisors'. Of eligible families across the four sites, 83% agreed to participate, of whom 96% completed the baseline, mid-term, and postintervention assessments. Families participated in an average of 2.85 intervention sessions over an 8-month period. The intervention was integrated into the clinic setting without impairing clinic flow and was implemented with fidelity and consistency across sites by trained non-professionals. The findings provide evidence of the feasibility of conducting a multisite trial to evaluate the effects of a clinic-integrated problem-solving intervention to improve family management,' wrote T.R. Nansel and colleagues, National Institute of Child Health and Human Development.

The researchers concluded: 'Many lessons were learned that provide guidance for recruitment, measurement, and intervention for the larger clinical trial.'

Nansel and colleagues published their study in Pediatric Diabetes (A multisite trial of a clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: feasibility and design. Pediatric Diabetes, 2009;10(2):105-15).

For additional information, contact T.R. Nansel, National Institutes of Health, Division of Epidemiology, Statistics and Prevention Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, DHHS, Bethesda, MD USA..

Publisher contact information for the journal Pediatric Diabetes is: Blackwell Publishing Inc., 350 Main St., Malden, MA 02148, USA.

Keywords: United States, Bethesda, Life Sciences, Pediatric Diabetes, Type 1 Diabetes, Insulin Dependent Diabetes Mellitus, Child Health, Behavior.

среда, 3 октября 2012 г.

Orlev slams government for failing to reform mental-health services. National Council of the Child head Dr. Yitzhak Kadman decries 'shocking' pediatric psychiatric treatment, 'collapsing' facilities - Jerusalem Post

JUDY SIEGEL
Jerusalem Post
01-12-2011
Orlev slams government for failing to reform mental-health services. National Council of the Child head Dr. Yitzhak Kadman decries 'shocking' pediatric psychiatric treatment, 'collapsing' facilities
Byline: JUDY SIEGEL
Edition: Daily
Section: News
Type: News

The Health Ministry conceded on Wednesday that there is a serious shortage of medical manpower in the public psychiatric service it runs, especially in the treatment of children and teenagers. The charge was made in Tuesday's meeting of the Knesset Committee for Children's Rights by chairman MK Zevulun Orlev (Habayit Hayehudi) as well as others attending the session.

'The Treasury has not learned its lesson from the Carmel Forest fire tragedy,' Orlev said. 'There, the development and reform of the Fire Service was held back. The Treasury regards the mental-health service as a hostage until reform begins.'
A 40 percent decrease in beds for minors in psychiatric hospitals has occurred during the last 15 years, according to data provided by the Knesset research and information department. Dr. Igor Barash, the deputy head of the Health Ministry's mental-health services said that when National Health Insurance began in 1995, structural reform was carried out and 200 hospital beds were eliminated in the hope that patients would be treated in the community. He added that the government thought more community facilities would be constructed, replacing many of the inpatient facilities. But solutions were not found, especially for children and teenagers.

Dr. Michal Rappaport of the Child Psychiatry Society, said that there are 170 pediatric psychiatrists in the country.

'When a child comes for treatment in a clinic, I allocate a year's care for him. Priority is given for serious cases, and 'light' cases such as parents' divorce or criminality have to wait long months while the problems get more serious,' she said.

'Children discharged from psychiatric hospitals are given drugs that stabilize them, but they need continued treatment, and in many cases, the health funds do not approve the recommended medications.'

The health insurers approve psychiatric drugs only for those with psychosis or schizophrenia, and not those with behavioral problems, she said.

Orlev said that the committee will make a surprise visit to facilities that treat children and have another committee session on the matter in six months. The committee criticized the Treasury's approach of holding back reform because of a 15-year dispute over the status of these services. It also discovered problems of coordination between the Health Ministry and the Welfare and Social Services Ministry, Orlev said.

National Council of the Child head Dr. Yitzhak Kadman said that state treatment of mentally disturbed children and youths was 'shocking' and that facilities are 'collapsing.'

The Health Ministry said it is working to advance the reform in which the health funds would provide psychiatric services instead of the ministry, which has inadequate budgets for such an undertaking. Deputy Health Minister Ya'acov Litzman previously had opposed the reform, but he said he reluctantly agreed to it almost two years ago. But it has not yet been implemented due to Treasury opposition.

To provide more pediatric psychiatrists, the ministry said it added 34 more job slots in the last few years and recognized pediatric psychiatry as a 'specialty with inadequate manpower,' offering salary bonuses to doctors who specialize in it.(c) Copyright Jerusalem Post. All rights reserved.

(Copyright 2011 The Jerusalem Post)

вторник, 2 октября 2012 г.

Understanding Children with Special Health Care Needs: A National Pediatric Nursing Challenge.(Brief Article) - Pediatric Nursing

The technologies of medical care have greatly improved in the last decades to the extent that infants and children are surviving, and in some cases thriving over, conditions that were previously lethal. These children are not unique to North America. Children with complex medical conditions, chronic illnesses, or disabilities exist around the world. They grow and develop along with their 'normal' peers, presenting unique challenges to their respective health and educational systems due to their complex needs. Nurses around the world take care of them. No matter what country these children live in, particularly in the industrialized world where a comprehensive health care system is a source of great national pride, we know historically that they are an underserved population. Traditional systems of care fall short of reaching children with complex medical, developmental or behavioral problems adequately. Families struggle to find services for them.

In the United States, it is now estimated that up to 30% of children aged 18 or younger have a chronic condition (Newacheck & Halfon, 1998) and that approximately 20% of these children have more than one condition (Newacheck & Stoddard, 1994). Children with chronic disease and disability make up a large proportion of the hospitalized and community-based patients we serve. These conditions often impact on development or behaviors of the child, with many having serious influence on all aspects of daily life. Pediatric nurses from all nationalities are called upon to understand and meet the care requirements presented by these special children in a variety of settings, and it is always an additional challenge when the systems of care impose barriers.

Issue Focuses on Children with Special Health Care Needs

It is for these reasons that this issue of Pediatric Nursing tackles topics related to serving children with special health care needs, and offers articles that represent a variety of international perspectives. As our industrialized nation confronts its own sad track record of serving the most vulnerable of its citizens, we need to be cognizant of what nurses do in the rest of the world. It is important to periodically glimpse at the research and programs of care provided by nurses in other nations. With insights from countries different from our own we can be proud of some of our advances and humbled by some of our shortcomings.

In addition to the international CE Series in this issue on children with special health care needs, the launch of the Maternal and Child Health Bureau (MCHB) national 10-Year Action Plan, 'All Aboard the 2010 Express' is highlighted (see pages 429, 432) to remedy some of the barriers that exist in today's medical approach to care. In this country, as well as in many others, we recognize that children do best when they have access to comprehensive, family-centered, culturally competent, coordinated, and fully inclusive systems of service at the community level. This document, a companion to Healthy People 2010, and its associated educational activities scheduled for distribution in December 2001, promise to children with special health care needs a commitment of service by multiple professionals predicated on establishing a 'medical home.' The notion of a medical home is intended to be a broad, inclusive term, meaning a source of ongoing, comprehensive care by a primary care professional in the child's community. The needs of the child and the family are central to the medical home approach. Professionals who are part of the medical home ideally develop a trusting partnership with families, respecting their diversity, and recognizing that families are the constant in a child's life as well as their most important caretakers (Achieving Success for All Children and Youth with Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010, 2001, p. 10).

Call to Action for Pediatric Nurses

These recommendations are consistent with what pediatric nurses in the U.S. and around the world do. In the pages of 'All Aboard the 2010 Express,' as the ideas of family-centered care are folded into the descriptions of a 'medical home,' it becomes clear that nurses need to be at the front of this train helping to set the action plan in place. In coordinating services with the child's identified 'medical home,' providers can ensure that children have continuity of care from visit-to-visit, from infancy through transition into adulthood, as an organized team with an accessible, comprehensive, central record that contains all pertinent information about the child in a way that assures confidentiality. Nurses can make this happen. In the coming months as this plan unfolds, beginning with the October 1st National Child Health Day established by Congress, nurses need to actively engage in state and community activities to educate all professionals, administrators and policy makers with these materials so that new systems of service can be developed.

References

Achieving Success for All Children and Youth with Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010. (2001). Washington DC: Department of Health and Human Services, Maternal Child Health Bureau.

Newacheck, P.W., & Halfon, N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88, 610-617.

понедельник, 1 октября 2012 г.

Georgia facility sets a new standard: Willowbrooke at Tanner presents a brand-new behavioral health hospital to meet the state's growing needs.(DESIGN FOCUS)(Report) - Behavioral Healthcare

The state of Georgia waited 20 years for a new behavioral health hospital, a wait that was rewarded with Willowbrooke at Tanner, a 52-bed facility serving pediatric, adult, and geriatric clients that opened in April 2009 and set a new standard for care.

As part of Tanner Health System, the 50,000-square-foot Willowbrooke at Tanner facility, located in Villa Rica, averages more than 650 behavioral health assessments per month. Yet, despite this client traffic, it functions efficiently in terms of cost and staffing thanks to well-planned design led by Wayne Senfeld, the facility's administrator, Paula Gresham, the facility's assistant director, and Willowbrooke at Tanner staff.

[FIGURE 1 OMITTED]

In the early stages of the facility's development, Tanner benchmarked peer facilities nationwide and identified best practices. Then, it trusted staff to make the major design decisions. 'The cornerstone of the decision was the depth, quality, and commitment level of the behavioral health staff,' says Tanner President and CEO Loy Howard. 'They were really the lead--Wayne and his team.'

From the start, the design team sought to create a serene, natural aesthetic, free from any 'institutional' feel. The aesthetic begins with a landscape design that combines the site's willow trees with colorful foliage, year 'round. 'There's always going to be some color out here,' says Senfeld, 'whether it's fall foliage or flowers in the spring.' Clients can enjoy the environment in the facility's outdoor dining areas and courtyards.

The natural aesthetic is carried directly into the lobby (figure 2), which was developed by Mark Camp and Kevin Sutton of Advantage Office Solutions' commercial interior design division. 'We brought in botanical and leaf motifs and things that were very natural feeling,' says Camp. 'We took our color cues from a palette of beiges, browns, greens, and blues and kept it very calming and serene--almost like a spa.'

[FIGURE 2 OMITTED]

The lobby also features a 20-foot glass waterfall, which is 'kept at a nice, neutral flow all the time,' says Senfeld. Framed by large windows, he adds that the lobby and waterfall 'create a soothing environment that I think is very helpful in terms of treatment.'

The layout of the nurses' station (figure 3) helps to maximize staff efficiency, functioning as the hub of Willowbrooke at Tanner's single-floor layout. From the station, the staff has a line of sight--directly or via security camera monitors--to every area of the facility. 'You can be in the nurses' station and still be monitoring what's going on in a group room, the cafeteria, or the gymnasium,' Senfeld explains. 'You're constantly aware of the feel and the security of the building.' Wall-mounted computers in the hallways support paperless charting and enable staff to stay closer to the clients.

[FIGURE 3 OMITTED]

In addition to line of sight monitoring, sensors in client beds and hallways, developed by KNINE TECHnologies of Douglasville, GA, notify staff if clients leave or fall from their beds, or if clients are walking the halls.

Staff worked with a mechanical engineering firm, Addison Smith Mechanical Contractor, Inc. of Carrolton, GA, to develop client rooms that seamlessly merge comfort with mandatory safety features, including:

* Window blinds located inside two layers of shatter-proof Lexan glass, which are operated by a button inside the room;

* Breakaway hangers and shower curtains that support maximum loads of 15 pounds;

* Artwork mounted on foam-core board instead of traditional wood/glass frames;

* Piano door hinges; and

* Covered heating and air vents.

The seamless design of such features reflects the design team's determination to provide inviting, dignified surroundings. So, too, does the design of areas suited to pediatric, adult, and geriatric clients. Rooms in the pediatric wing (figure 4) are decorated with 'kid-friendly patterns and colors to make it more of a fun area,' says Sutton. Large circles in the corridor flooring were 'pulled into the room to continue a circular motif,' adds Camp, representing the full circle of treatment. Adult and geriatric wings, meanwhile, feature solid, contemporary colors that offer depth and richness and better reflect more mature tastes.

[FIGURE 4 OMITTED]

Common areas (figure 5) reflect similar thinking. For example, Camp and Sutton chose recliners and glider rockers for the geriatric common room. 'These give a little more comfort to clients who are less likely to be up and mobile,' says Camp.

[FIGURE 5 OMITTED]

Senfeld points out another client-focused feature: two flat-screen television sets in each common area. 'It has really bothered me over my career to go into a common area and see the patients huddled around a 19-inch television on the floor. They all have to watch the same thing. It's dehumanizing in a lot of ways,' he says. Multiple TVs, with DVD players located in the nurses' station, offer clients a choice of what they would like to watch.

Camp and Sutton selected furniture and materials that were pleasing to the eye, but easy to maintain. They chose vinyl-covered, componentized chairs that enable repair or replacement of damaged parts, rather than the whole chair. 'We used chairs to create seating and conversational groups. All three [common] areas also have tables,' says Camp.

The facility's most important treatment area, the expressive therapy room (figure 6), continues the design team's balance of durability and physical appeal. 'When you're dealing with mental health and emotional disturbance, there is a tremendous amount of energy, and that energy is often released in group and expressive therapy,' Senfeld says. 'Expressive therapy rooms get a lot of use, so we incorporated elements that are easier to maintain.' Marlite--a rough, plastic like material--lines the lower walls to resist marks and dents and maintain the look of the room, where clients go to explore their feelings through drama, art, and music.

[FIGURE 6 OMITTED]

Another high-activity area is the gymnasium (figure 7), which includes a rock-climbing wall. 'Clients need some downtime to go run around or shoot a basketball. So having that gymnasium has been really helpful,' says Senfeld, who adds that local schools assisted in fundraising for the climbing wall by collecting $5,000 in nickels and dimes.

[FIGURE 7 OMITTED]

Clients aren't the only ones to benefit from Willowbrooke at Tanner's amenities. The site hosts continuing education courses for its 100 employees in the classroom (figure 8). Because it is 'nearly impossible' to afford sending so many staff' off-site for required licensure training, Senfeld explains that 'we offer about 50 hours per year of continuing education credits to our staff.' The room features a SMART board and refreshment area, along with chairs and tables that offer flexible seating arrangements. It's a win-win: a comfortable, convenient, and cost-saving educational resource for all.

[FIGURE 8 OMITTED]

Though the facility just opened last year, Willowbrooke at Tanner is already looking to the future. 'We have designed it so that we can add another 20 beds to it,' says Tanner's Senior Vice President Larry Steed. He adds that Tanner will also be looking into incorporating other treatment modalities, such as brain mapping for people with PTSD, into the core services at Willowbrooke at Tanner.

Well received by staff and clients alike, Willowbrooke at Tanner has set a new standard for behavioral healthcare delivery for Tanner and for the state of Georgia. 'Willowbrooke's development has confirmed how critical it is to include staff in a leadership role in the architecture, design, and flow of the facility,' Howard says. 'If you truly stay committed to that approach, you end up with a better facility that is really geared toward taking care of patients.'

RELATED ARTICLE: Furnishing Willowbrooke at Tanner

Mark Camp and Kevin Sutton of Advantage Office Solutions turned to dozens of furnishing manufacturers in their efforts to supply Willowbrooke at Tanner with the finest resources for the brand-new facility. Some of the furnishings featured throughout the facility were manufactured by:

* GlobalCare: Patient lounges, group and consultation rooms, dining room

* Kl: Continuing education seating

* Legacy Furniture Group: Lobby

* Recover Care: Client beds

* Teknion: Staff offices and training area

* Landscape Forms: Exterior furnishings

* Shaw Contract: Carpet

* Armstrong: Floor tile

воскресенье, 30 сентября 2012 г.

Medicaid Behavioral Health. - State Health Watch

Mental health and substance abuse services that are mandated by state and federal law are being left out of contracts for managed Medicaid behavioral health programs, says a report by the Center of Health Policy Research at George Washington University.

Regardless of whether state officials think itAEs a covered benefit under managed care, if agreements are ambiguous or silent on these issues, states remain legally bound to provide services because managed care plans can argue oitAEs not in the contract.o

A case in point: Many states are surprised to learn that their managed care programs donAEt necessarily cover services ordered by courts, schools, or other social service agencies but which they are obligated to provide. MCOs might deny coverage because they deem the services to be not medically necessary or primarily educational in nature.

In a much-anticipated survey, GW lawyers reviewed agreements on behavioral health between Medicaid agencies and managed care organizations in 37 states. The survey illustrates the power imbalance between the more sophisticated managed care organizations and the less experienced Medicaid agencies. It also points to a cultural gap between commercial insurers and Medicaid agencies, which serve a much needier population. The many ambiguities in health care such as what is omedically necessaryo also cause problems.

Commercial insurers, for example, generally consider medically necessary care to be treatments needed to restore functioning following an acute illness or injury. Medicaid, by contrast, may ocover preventive, ameliorative, and development enhancing services for children and adults with chronic illnesses and disabilities.o The gap is particularly great in pediatric coverage because of the unique standard of medical necessity under the EPSDT (Early Periodic Screening, Diagnosis and Treatment) program.

E. Clarke Ross, executive director of the American Managed Behavioral Healthcare Association (AMBHA), says his association agrees that there needs to be ogreater specificityo in contracts between Medicaid agencies and managed care organizations. ItAEs been largely a matter of state health policy to cover only a traditional, limited benefit structure under managed care and not to integrate block grants and non-Medicaid funding for more comprehensive coverage, according to Dr. Ross.

There needs to be oclear and conciseo information on owhat is being paid for.o If states osay they want to finance 30 days of hospitalization and 20 days of clinic-based, medically necessary care,o then they shouldnAEt ocriticize the lack of vocational rehabilitation services.o

State officials should sort through Medicaid coverage requirements in order to decide which duties are appropriate for managed care and which should continue to be handled by the state, the report says.

In another report, GW researchers reviewed 50 representative agreements between managed care organizations and providers.

oIt was an unpleasant confirmation of what we feared,o says Eric Goplerud, associate administrator for managed care for the Substance Abuse and Mental Health Services Administration (SAMHSA). oIt confirmed our suspicion that provider contracts are as inequitable.o

In many agreements, providers can be terminated at will; the financial terms of their agreements can be unilaterally modified; and the responsibility for eligibility verifications and determinations for the patient and for recovering payments from multiple payers is left to them.

SAMHSA has developed a manual to educate providers about what the provisions in their contracts mean. Other resources include a technical assistance manual on network formation which has similarities to ounion organizing,o Mr. Goplerud says. The manual shows providers how they may legally and jointly negotiate agreements to have more bargaining clout. SAMHSA also is developing materials to educate providers about financial management and risk assessment.

The best avenue to helping MH/SA agencies may be to focus on the contracts between the Medicaid agency and the managed care organization rather than on provider agreements, Mr. Goplerud says.

The study found that contracts with MH/SA agencies commit to the purchasing of only limited services and not the full range of services available and which the state may expect are being offered.

The report recommends that states review provider agreements. Dr. Ross says he takes exception to the bias toward community-based providers in the study. He notes that other providers in managed care networks offer services such as psych-rehab, self-help peer groups, clubhouses, etc. He does not agree that those comprehensive services should be provided by MS/SA agencies.

суббота, 29 сентября 2012 г.

Measuring behavioral health is a new challenge - Managed Healthcare

Although it has many similarities with physical health, outcome goals vary with each patient

Behavioral healthcare is frequently a contracted service in many health plans. As such, the qualityof-care assessment is even more important. But it poses a significant challenge for quality managers, many of whom come from a medical background. Performance measurement in behavioral health should be approached in the same framework as medical/surgical care. We still need to consider clinical quality, service quality and satisfaction across the continuum of care. A rigorous approach is warranted considering that the practice of psychiatry has undergone even more significant change under the pressures of managed care than some other areas of specialty.

Inpatient on the way out. Care has shifted drastically to the ambulatory setting with few situations and conditions warranting inpatient stays. In addition, when inpatient stays are approved, the length of stay is significantly shorter than it was in previous years. Therefore, quality professionals must design performance measurement programs to encompass traditional domains and keep in mind the considerable shift from inpatient to ambulatory care and its potential impact on outcomes.

Although the physical health of the patient is important, in behavioral health functional outcomes are the key measures by which to determine if the goals of therapy have been achieved. For example, the ability of an adult with bipolar disorder to maintain their 'normal' or desired role of parent and spouse is important. Improved attendance at work or school (or, conversely, decreased use of sick days related to the underlying psychiatric condition) might be an objective measure that is easily captured. But management of the parental or spousal role is more difficult to quantify, making a more qualitative measure necessary.

Adverse outcomes should also be incorporated into performance measurement. Failure of patients to comply with medication and treatment regimens should be tracked. Process and utilization measures should be included in clinical quality measurement. Service quality also is important with this population. Without suggesting a double standard, patients requiring mental healthcare require better access and availability than those seeking other services. The goal is to schedule an appointment as soon as possible.

Outpatient management of medications is a key function in mental healthcare and should be monitored in a performance-measurement program.

Although patient preference for strict confidentiality poses some barriers, the domain of satisfaction, including the patient and his or her family, is of critical importance in providing mental healthcare services. Satisfaction measurement tools for adult patients might differ from those for pediatric and adolescent patients, although the underlying principles and goals remain the same.

The satisfaction of the other 'customers' of mental healthcare servicesprimary care physicians and other referring practitioners-also should be evaluated. Written surveys to PCPs can be helpful, but meetings involving PCPs and mental health professionals to discuss general approaches to treatment and patient management can be quite effective in improving patient care.

Performance measurement in mental healthcare is a critical component of population-based medical care. The extreme changes in the delivery of behavioral healthcare should compel us to carefully measure and monitor the outcomes of clinical care as well as service quality and satisfaction.

Quality-management professionals must collaborate with their mental health colleagues in developing and implementing meaningful performance measurement strategies. Results of these efforts will then guide important quality improvement efforts.

[Author Affiliation]

пятница, 28 сентября 2012 г.

Tracking pediatric asthma: the Massachusetts experience using school health records.(Public Health Tracking / Mini-Monograph) - Environmental Health Perspectives

The Massachusetts Department of Public Health, in collaboration with the U.S. Centers for Disease Control and Prevention Environmental Public Health Tracking Program, initiated a 3-year statewide project for the routine surveillance of asthma in children using school health records as the primary data source. School district nurse leaders received electronic data reporting forms requesting the number of children with asthma by grade and gender for schools serving grades kindergarten (K) through 8. Verification efforts from an earlier community-level study comparing a select number of school health records with primary care provider records demonstrated a high level of agreement (i.e., > 95%). First-year surveillance targeted approximately one-half (n = 958 schools) of all Massachusetts's K-8 schools. About 78% of targeted school districts participated, and 70% of the targeted schools submitted complete asthma data. School nurse-reported asthma prevalence was as high as 30.8% for schools, with a mean of 9.2%. School-based asthma surveillance has been demonstrated to be a reliable and cost-effective method of tracking disease through use of an existing and enhanced reporting structure. Key words: environmental public health tracking, epidemiology, indoor air quality, pediatric asthma, prevalence, school health, surveillance. Environ Health Perspect 112:1424-1427 (2004). doi:10.1289/ehp.7146 available via http://dx.doi.org/[Online 3 August 2004]

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Asthma is one of the most common chronic diseases among children [American Lung Association (ALA) 2003] and has increased in prevalence over the past decades [Centers for Disease Control and Prevention (CDC) 2000]. According to CDC, the prevalence of current asthma among children 5-14 years of age increased from 4 to 7% between 1980 and 1996 (Mannino et al. 1998). More recent National Health Interview Survey (NHIS) findings suggest that prevalence rates may be leveling off, but more data are needed before the trend is clear (Akinbami et al. 2003). Findings from the 2001 Behavioral Risk Factor Surveillance System (BRFSS) show that the prevalence of current asthma for children in Massachusetts younger than 18 years of age is estimated to be 8.8%, whereas the prevalence of lifetime childhood asthma is 12.4% [New England Asthma Regional Council (ARC) 2004]. Asthma health care costs $3.2 billion annually for American children under the age of 18 (ALA 2003).

The reasons for the reported increase in asthma prevalence are unclear (Redd 2002). The increase may be a result of greater exposure to allergens and pollutants (Teague and Bayer 2001; Walker et al. 2003), improved identification of the disease (Barraclough et al. 2002), or the influence of other risk factors such as obesity (Gilliland et al. 2003) or infection (Camara et al. 2004). It is clear that asthma affects families through increased medical visits, school absenteeism, and lost work (Mannino et al. 2002). Statistics from national surveys also show disparities in asthma statistics among those affected by the disease (ARC 2004; Bloom et al. 2003; CDC 2004). For example, findings from the NHIS indicate that children 5-14 years of age have higher asthma prevalence than do other age groups and that, generally, African-American children experience more hospitalizations and mortality from asthma than children classified as white or other ethnicity. The NHIS also describes disparities by geographic region, with the northeastern United States experiencing more hospitalizations from asthma than other regions (Bloom et al. 2003). Data from the BRFSS show an inverse relationship between lifetime childhood asthma and household income in New England (ARC 2004). These observations suggest that environmental factors may be important.

The magnitude of prevalence and cost of asthma is a priority concern among public health organizations across the country. Promoting respiratory health and reducing morbidity and mortality from asthma are goals of the U.S. Department of Health and Human Services (U.S. DHHS) Healthy People 2010 (U.S. DHHS 2000). Environmental factors, such as indoor air quality (IAQ), and social factors, such as access to health care, are thought to explain some of the health disparities noted. However, our understanding of the strength of these relationships and our ability to identify opportunities to reduce morbidity and mortality are limited by the lack of systematically collected asthma data at the community level.

Available asthma prevalence information for Massachusetts has been generally limited to prevalence figures for the entire state or selected urban populations estimated through the BRFSS, a random telephone survey implemented by state health departments in conjunction with CDC. National figures have been available through the NHIS, which annually collects health and behavioral information through personal interviews. Historically, community-level data have been limited to communities with specialized surveillance programs or where research studies have been implemented.

In 2002 CDC established the national Environmental Public Health Tracking (EPHT) program. This program, building upon the recommendations of CDC work groups, the Pew Environmental Health Commission (Pew Foundation 2000), and other public health investigations (Lanphear and Gergen 2003), aims to develop a national network for the systematic collection, evaluation, and dissemination of health outcome and environmental hazard data. In response to the CDC program announcement, the Massachusetts Department of Public Health (MDPH) developed a proposal to track pediatric asthma through school health records based on previous work carried out in the Merrimack Valley of Massachusetts. Preliminary findings of this work suggested that school health records were a reliable data source for community-level asthma tracking, or surveillance, in children. This article describes the results of the first year of the Massachusetts pediatric asthma surveillance project and discusses project goals for years 2 and 3.

Materials and Methods

Surveillance design. The objective of the MDPH pediatric asthma surveillance project is to determine the prevalence by school building of pediatric asthma among children enrolled in grades kindergarten (K) through 8. The surveillance system is designed to use the existing infrastructure of the school health system. Massachusetts school health records document demographic and emergency information, immunization history, past medical history, medication administration at school, and results of school physical exams. School nurses also keep medication administration plans for students receiving medications at school. Therefore, the information contained in the school health record is used as the data source for all health and demographic information. The school nurse or school health contact person for each school was asked to complete a pediatric asthma surveillance form reporting the number of children with asthma by gender and by grade. Only aggregate data were requested.

Target population. In year 1 of the MDPH pediatric asthma surveillance project, all schools participating in the MDPH Essential School Health Service (ESHS) program were requested to provide information on the number of children with asthma in grades K-8 during the 2002-2003 academic year. The ESHS is a program designed to build school health capacity in Massachusetts public and private schools. ESHS districts are required to have a full-time master's-prepared district nurse leader coordinating the health activities of that district's schools. All Massachusetts communities were eligible to apply for ESHS grants. The target population included 958 public schools in 173 cities and towns (111 school districts) serving more than 395,000 children, or approximately 57% of Massachusetts's K-8 students.

Surveillance definition of asthma. School nurses were asked to provide information contained in school health records on the number of K-8 students attending the school 'who have asthma of any type or severity' for the 2002-2003 school year. MDPH also requested the number of records documenting diagnosis of asthma made by a health care provider.

Data collection. During January 2003, the MDPH mailed introductory letters regarding the asthma surveillance project to school superintendents, principals, and nurse leaders in eligible school districts. Project staff also made presentations at professional school nurse meetings to address questions or concerns. Additionally, an advisory committee was formed consisting of district nurse leaders from across the state. During the initial stages of the project, advisory committee members reviewed the surveillance form to ensure its ease of use. In March 2003, district nurse leaders in each target community were asked to distribute the two-page surveillance form asking for aggregate numbers of children with asthma by grade, gender, and school building (MDPH, unpublished protocol). Table 1 shows the information requested. When possible, surveillance forms were distributed to nurse leaders via E-mail to facilitate electronic data submission. If E-mail was not available, forms were sent via fax or the U.S. Postal Service. Follow-up telephone calls were placed to nurses who did not respond by April 2003. School enrollment data were collected from the Massachusetts Department of Education or from a school's administrative staff. Schools that did not return complete surveillance data, or for which student enrollment data could not be obtained by June 2003, were considered nonresponders.

Data analysis. Data analysis was performed with SAS (version 8.02; SAS Institute Inc., Cary, NC) and Microsoft Access (Microsoft Office 2000 SR-1 Professional; Microsoft Corp., Redwood, WA). The prevalence of asthma with 95% confidence intervals (95% CIs) was calculated for each participating school and school district and by grade level.

Results

Participation. MDPH received complete information from a total of 760 schools. Of these schools, 668 were targeted ESHS schools, translating to a 70% participation rate. The remaining 92 schools were private schools (n = 52), charter schools (n = 9), and public schools not included in the ESHS (n = 31). At the district level, MDPH received data from at least 1 school in 87 of the 111 targeted ESHS districts (78%). Participation ranged from 6 to 100% within school districts.

Reported asthma prevalence. The reported prevalence of asthma among the 311,610 students enrolled in the 760 participating schools was 9.2% (95% CI, 9.1-9.3%). Sixty percent of students reported to have asthma were male. Reported prevalence by individual schools ranged from 0 to 30.8%, with a median school asthma prevalence of 8.9%. Reported asthma prevalence by school district ranged from 2.7 to 16.2%, with a median district asthma prevalence of 8.8%. Figure 1 presents the frequency distribution of district-wide reported asthma prevalence figures. Reported asthma prevalence by grade ranged from 7.7 to 10.3% (Table 2).

[FIGURE 1 OMITTED]

Other variables. Analyses were conducted to determine the percentage of students with documentation of a health care provider diagnosis of asthma and/or asthma medication order. Results showed that half of all nurses reported that 90-100% of their students with asthma had documentation in the health record of a provider diagnosis of asthma and/or asthma medication orders. Approximately 25% of nurses indicated that 75-85% of student health records contained a diagnosis, and the remaining 25% of nurses reported that less than 75% of the student health records had this documentation.

Responses to questions eliciting other sources of information used by nurses to identify children with asthma showed that almost 90% listed parent or student communications as an alternative source of knowledge of a student's asthma status (41 and 48%, respectively). Direct observation of an asthma attack was rarely a source of information (< 0.5%).

Discussion

Comparison with other data sources. The MDPH was successful in obtaining asthma surveillance data from 70% of targeted schools serving more than 311,000 students through its school-based pediatric asthma surveillance system. While the reported prevalence of pediatric asthma observed during the first year of the MDPH pediatric asthma surveillance project was 9.2%, it is important to note that prevalence ranged as high as 16.2% by district and nearly 31% by individual school. The statewide prevalence estimate is somewhat higher but nonetheless similar to the 8.8% prevalence of current childhood asthma in Massachusetts reported by the ARC based on BRFSS data collected in 2001 (ARC 2004). A Connecticut school-based surveillance effort by Environment and Human Health, Inc., similar to the one implemented in Massachusetts, reported a 9.7% asthma prevalence among students in grades K-5 (Storey et al. 2003). In comparison, K-5 prevalence estimate in Massachusetts was 8.8%.

Practical considerations. A number of issues are important in assessing the utility of school health records as a pediatric asthma surveillance tool. These include the resource impacts on the individual school, the completeness of the data, the utility of the data to decisions makers, the ability to link health data with environmental databases, and compatibility with other state and national asthma surveillance programs. As a part of its CDC-funded EPHT program, the MDPH has begun addressing these issues.

Through close collaboration with school nurses and school nurse leaders, the MDPH has been able to develop a surveillance system that is responsive to concerns regarding impacts on schools. These concerns included requesting information once per year and at a time that is in less competition with other school nurse work demands, simplifying the data collection form, keeping school administrators informed, and sharing results in a timely fashion.

During the next 2 years, the MDPH will be evaluating the reliability and quality of the surveillance data collected. However, preliminary work carried out as part of the Merrimack Valley project suggested that data reliability and quality are excellent. In that project 184 schools serving grades K-8 located in 21 communities with 64,000 students participated. As in the current surveillance project, nurses were asked to provide data from school health records on the number of children with asthma. MDPH staff worked with school nurses and area physicians to confirm the diagnostic information contained in the school record and to validate the information collected to determine if asthma had been identified in children but not reported in the school record. The findings confirmed that the diagnostic information was accurate in 98% of the records evaluated and suggested that children with physician-diagnosed asthma were usually identified in the school health record as having asthma.

Although there was notable variation in reported asthma prevalence between schools and school districts, caution is needed when comparing the prevalence estimates between specific schools or districts during the surveillance project's first year. Some school district prevalence estimates were based on reporting by a small percentage of the district's schools and therefore may not be representative of that district's actual asthma prevalence. Differences in school health systems between schools may further complicate the issue of comparability of asthma prevalence estimates. Such differences arise because there is not presently a requirement for systematic and standardized collection of asthma information in Massachusetts schools. Opportunities exist to improve the collection of asthma information through enhancements of the school-required medical history form and through encouraging the use of asthma action plans for all students with asthma. These improvements would facilitate more systematic and standardized data collection and aid in managing a student's asthma.

It is also important to note that a higher prevalence of asthma within one school or district does not necessarily indicate the presence of environmental problems within that district's schools. Pediatric respiratory symptoms have been associated with a number of factors including exposures in the outdoor environment (Boezen et al. 1999; Delfino et al. 2002; Tolbert et al. 2000), exposures in the home environment (Rosenstreich et al. 1997; Smith et al. 2000; Sturm et al. 2004), genetic factors (El-Sharif et al. 2003; Lee et al. 2003), and lifestyle factors (Aligne et al. 2000; Heinrich et al. 2002). The MDPH pediatric asthma surveillance project is a surveillance system, and information about risk factors is not available. The collected information can be used to target intervention activities and to generate hypotheses about possible etiology. For example, IAQ is being assessed in approximately 100 schools as part of the MDPH's overall EPHT program. The assessments are conducted following a standardized protocol (MDPH, unpublished protocol) and include the measurement of total volatile organic compounds, particulate matter with an aerodynamic diameter < 2.5 [micro]m, carbon monoxide, carbon dioxide, and evaluation of indicators of moisture and mold. IAQ assessment data for individual schools will be linked with asthma data to evaluate whether IAQ may be associated with asthma prevalence in students. School asthma data can also be linked with ambient air quality data by geocoding school addresses and connecting to existing ambient air quality data.

Local public health officers and other stakeholders often express interest in community-level prevalence estimates, but little information is available (Boss et al. 2001; Lanphear and Gergen 2003; White et al. 2002). This interest is based on the desire to identify and address the impacts of local environmental factors, as well as to delineate the need for health intervention programs. In a surveillance system that relies on aggregate data from school health records, prevalence estimates are generated by school and by school district. Therefore, the ability to generate community-specific prevalence is somewhat limited. Although it usually is possible to estimate town/city prevalence based on school data, some school districts are regional and draw students from multiple communities. Nevertheless, even school district-level prevalence estimates offer a more comprehensive view of pediatric asthma prevalence on the local level than do other surveillance data currently available. Sources such as hospitalization, emergency department, and Medicaid data look only at select segments of the population. These data sources can provide important insights into certain high-risk populations but exclude most individuals with asthma (Boss et al. 2001).

Another factor that may warrant consideration relates to the definition of asthma, which may not conform to the definitions used in the NHIS and BRFSS surveys and recommended by the Council of State and Territorial Epidemiologists (CSTE 1998). These definitions estimate asthma prevalence based upon responses to questions such as '[Has this child] ever been diagnosed with asthma?', 'Does this child still have asthma?' (CDC 2001), and 'During the past 12 months has [child's name] had an episode of asthma or an asthma attack?' (Bloom et al. 2003). It is unclear at this time which of the above definitions compares best with school nurse-reported asthma. The MDPH will be evaluating this issue over the next 2 years of the surveillance project.

Finally, the lack of electronic reporting to the MDPH may inhibit the utility of school-based surveillance. Many school nurses do not have direct access to a computer and/or the Internet, which presently limits electronic reporting of asthma data. In addition to the reporting methods employed in year 1 (fax, postal mail, and E-mail), other options are being explored that include web-based reporting and using electronic data collection forms on computer disks. To facilitate the transfer of information to CDC and other public health officials, the MDPH will use the National Electronic Disease Surveillance System (NEDSS). NEDSS is a standards-based electronic information system architecture that states can use to gather and disseminate information from a variety of sources.

Whether school-based asthma surveillance would be as successful in other states is an important question to resolve in order to meet the long-term goal of developing a national environmental public health tracking program. A Healthy People 2010 objective is to increase the proportion of U.S. schools with a nurse-to-student ratio of at least 1:750 (U.S. DHHS 2000). At present, however, not every school (including those in Massachusetts) has a nurse, or a nurse may be responsible for more than one school. Implementation of computerized school health records may help to overcome this limitation.

Additionally, the MDPH is working with the ARC to determine the feasibility of a coordinated asthma surveillance program for New England. Differences in laws governing school health, the definition of asthma, and the school health infrastructure in the region are among the issues being discussed.

This public health surveillance effort provides community-level asthma surveillance data for the first time in Massachusetts. It represents an important first step in the establishment of a statewide asthma surveillance system and in identifying the components and methodologic issues for a nationwide tracking system for pediatric asthma. During years 2 and 3 of the pediatric asthma surveillance project, the MDPH is expanding its target population to include all public, private, and charter schools serving any of grades K-8 in each of the state's 372 school districts. Preliminary analysis suggested that on the local level, asthma prevalence might not follow the socioeconomic patterns typically referenced as determinants of asthma patterns and trends. For that reason, it may be important to consider potential contributions of environmental factors in the indoor and ambient environments. As the project is extended statewide, MDPH will conduct statistical analyses to help characterize school populations in relation to reported asthma prevalence. Additionally, the MDPH plans to evaluate pediatric asthma prevalence in relation to school IAQ. The MDPH pediatric asthma surveillance project may prove a valuable tool for tracking asthma prevalence, planning intervention activities, and improving our understanding of pediatric asthma by providing both community-level and statewide asthma prevalence data for the first time in Massachusetts.

Table 1. Information collected by the MDPH pediatricasthma surveillance project, 2002-2003.Variable name           DescriptionSchool address          Street address of the schoolMale                    Number of male K-8 students with asthmaFemale                  Number of female K-8 students with asthmaGrades K-8              Number of students in each grade with                          asthma (9 separate variables, 1 for                          each of grades K-8)Percentage documented   Percentage of students with health care                          provider documentation of asthma                          in health recordsSources                 Source(s) other than health care provider                          documentation that supplied nurses with                          knowledge of student asthma statusTable 2. Reported Asthma Prevalence by Grade, MOPHpediatric asthma surveillance project, 2002-2003.Grade   Prevalence % (n)    95% CIK          8.1 (2,561)      7.8-8.41          7.7 (2,598)      7.4-8.02          8.3 (2,780)      8.0-8.63          9.0 (3,052)      8.7-9.34          9.5 (3,266)      9.2-9.85         10.0 (3,535)      9.7-10.36         10.3 (3,692)     10.0-10.67         10.0 (3,656)      9.6-10.28          9.8 (3,598)      9 5-10.2Total      9.2 (28,738)     9.1-9.3Total number of K-8 students enrolled inparticipating schools is 311,610.

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Lee YL, Lin YC, Hsiue TR, Hwang BF, Guo YL. 2003. Indoor and outdoor environmental exposures, parental atopy, and physician-diagnosed asthma in Taiwanese schoolchildren. Pediatrics 112(5):e389. Available: www.pediatrics.org/ cgi/content/full/112/5/e389 [accessed 12 August 2004].

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Pew Foundation. 2000. Attack Asthma: Why America Needs a Public Health Defense System to Battle Environmental Threats. Baltimore, MD:The Pew Environmental Health Commission at the Johns Hopkins School of Public Health.

Redd SC. 2002. Asthma in the United States: burden and current theories. Environ Health Perspect 110(suppl 4):557-560.

Rosenstreich DL, Eggleston P, Kattan M, Baker D, Slavin RG, Gergen P, et al. 1997. The role of cockroach allergy and exposure to cockroach allergen in causing morbidity among inner-city children with asthma. N Engl J Med 336(19):1356-1363.

Smith B J, Nitschke M, Pilotto LS, Ruffin RE, Pisaniello DL, Willson KJ. 2000. Health effects of daily indoor nitrogen dioxide exposure in people with asthma. Eur Bespir J 16(5):879-885.

Storey E, Cullen M, Schwab N, Alderman N. 2003. A Survey of Asthma Prevalence in Elementary School Children. North Haven, CT:Environment and Human Health, Inc.

Sturm JJ, Yeatts K, Loomis D. 2004. Effects of tobacco smoke exposure on asthma prevalence and medical care use in North Carolina middle school children. Am J Public Health 94(2):308-313.

Teague WG, Bayer CW. 2001. Dutdoor air pollution. Asthma and other concerns. Pediatr Clin North Am 48(5):1167-1183, ix.

Tolbert PE, Mulholland JA, MacIntosh DL, Xu F, Daniels D, Devine OJ, et al. 2000. Air quality and pediatric emergency room visits for asthma in Atlanta, Georgia, USA. Am J Epidemiol 151(8):798-810.

U.S. DHHS. 2000. Healthy People 2010. 2nd ed. Vol 1: Understanding and Improving Health and Objectives for Improving Health, Washington, DC:U.S. Department of Health and Human Services.

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Robert S. Knorr, Suzanne K. Condon, Frances M. Dwyer, and Danielle F. Hoffman

Massachusetts Department of Public Health, Center for Environmental Health, Boston, Massachusetts, USA

This article is part of the mini-monograph 'National Environmental Public Health Tracking,' which is sponsored by the Centers for Disease Control and Prevention (CDC).

Address correspondence to R.S. Knorr, Massachusetts Department of Public Health, 250 Washington St., 7th Floor, Boston, MA 02108 USA. Telephone: (617) 624-5757. Fax: (617) 624-5777. E-mail: robert.knorr@dph.state.ma.us

The Massachusetts Department of Public Health thanks school nurses, the Pediatric Asthma Surveillance Advisory Committee, and the staff of the Department's Bureau of Family and Community Health who collaborated on this project.

This project is funded through cooperative agreement u50/ccu122451-02 from CDC, National Center for Environmental Health, Environmental Public Health Tracking Program.

This article was supported by an environmental public health tracking cooperative agreement from CDC. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.

The authors declare they have no competing financial interests.

четверг, 27 сентября 2012 г.

Parent-identified barriers to pediatric health care: a process-oriented model.(Child Health Services) - Health Services Research

Children's health care services access, utilization, and outcomes in the U.S. are characterized by disparities across vulnerability factors such as socioeconomic status (SES), race/ethnicity, and language (Newacheck, Hughes, and Stoddard 1996; Smedley et al. 2003). While much research has documented the associations between variables such as insurance status, race/ethnicity, education, and English language ability on health care access and quality, less is known about the processes by which these associations arise. Qualitative, patient-centered research methods hold great promise for expanding our knowledge in this area.

Building on Andersen and Aday's behavioral model of health care access (Aday and Andersen 1974; Andersen and Aday 1978), Aday's model of vulnerability (Aday 1993, 1994), and the noncategorical approach (Stein et al. 1993) to pediatric quality-of-care measurement, Seid et al. (2003) have proposed a conceptual model to organize examinations of how health care structures and processes affect health-related quality of life for vulnerable children. Earlier versions of this model have been used to generate a parent-report primary care measure (Seid et al. 2001), examine the effects of language, race/ ethnicity, and access to care on parents' reports of primary care experience (Seid, Stevens, and Varni 2003), and compare child health services access and primary care experiences on both sides of the U.S.-Mexico border (Seid et al. 2003). However useful for describing relationships between vulnerability factors and access to and quality of care, these quantitative studies fell short in elucidating the processes by which these relationships might arise.

For example, Seid, Stevens, and Varni (2003) documented, in a sample drawn from 18 elementary schools in an urban school district, that insurance status, language, and presence of a regular provider of care were significantly related to scores on a parent-report measure of pediatric primary care experiences called the Parent's Perceptions of Primary Care survey or P3C (Seid et al. 2001). A closer look at these data reveals that more than half (56 percent) of those with the lowest P3C scores (Z-scores less than--1.96) were insured, 43.5 percent completed the survey in English, and 39 percent reported having a regular doctor. In other words, despite the significant associations between vulnerability factors (insurance status, language, having a regular source of care) and the quality of primary care reported via the P3C score, a substantial number of children without these vulnerability markers experienced poor primary care. Conversely, a substantial number of children with vulnerability markers experienced better primary care.

Marker Variables and the Processes They Can Mark

This variation implies that insurance status, language, and presence of a regular provider are 'marker' variables--variables that assign an individual to categories that mark other sociobehavioral processes. These other processes can be understood to account for the differences seen in the P3C scores.

The Seid et al. (2003) model, revised accordingly to include the construct 'barriers to care,' posits that disparities in care and outcomes arise, in part, because barriers to care moderate each child's journey through the health care services system. Barriers to care are conceptualized as processes related to, but distinct from, sociodemographic vulnerability characteristics (Schulman et al. 1995; Committee on Pediatric Research 2000). Thus, every individual may experience barriers to care (Aday 1993), but certain vulnerability characteristics (e.g., race/ethnicity) increase the risk, and effects of, barriers to care. (1) Refocusing from vulnerability factors to barriers to care entails a shift in attention to process variables, which provides a way to theoretically link patient experience to quality of care. That is, instead of merely knowing which groups are experiencing what disparities, by focusing on processes through a qualitative lens, we can begin to know why and how.

In order to best understand these processes, it is essential to understand the perspective of the patient, or in this case, the parent. The research to be described here attempts to do just that.

Identifying Barriers to Care: The Importance of Parents' Perceptions

Parents are, increasingly, an important part of the pediatric care team (McMahon, Rimsza, and Bay 1997; Bryan and Burstein 2002; Sobo and Kurtin 2003). They are in a unique position to report on the care their children receive (Crain et al. 1998; Dinkevich, Cunningham, and Crain 1998; Garwick et al. 1998; Homer et al. 1999). And their perceptions and experiences of barriers to care may differ in important ways from those of health care professionals. These differences signify, among other things, the sometimes vast social and cultural gaps that separate parents and health care professionals. Professionals are acculturated to the world of health care, while parents experience this world (initially at least) as foreign and opaque--as a new and different culture (Sobo and Seid 2003). And parents are in a different social position in relation to this world than professionals. Understanding parents' perceptions, and the ways they might differ from those of health care professionals, is the key to developing programs and interventions to minimize barriers and is central to the provision of patient-centered care.

Maximizing Qualitative Methods for Health Services Research

In this article, we describe the parent experience of seeking care based on findings from Spanish and English language focus groups. We used these groups to gather information on process variables that the marker variables from the school study described above might be marking, and to devise a barriers to care questionnaire (BCQ) to measure their intensity for large populations (Seid et al. 2004).

Focus groups have long been utilized for developing questionnaires (Sudman, Bradburn, and Schwarz 1996). They are also useful for describing the potential range of responses that a given group might have to a particular question, from that group's point of view, and for providing a rich, in-depth understanding of the meaning of those responses so that the reasons behind questionnaire findings, such as frequencies, can be better understood (Basch 1987; Bender and Ewbank 1994).

But much focus group research in health services research (HSR) stops short of this. Overformalized, discussion-limiting moderation processes can yield 'equivalently limited data' (Morgan 1997, p. 40). Moreover, despite the existence of powerful qualitative analysis methods (e.g., Glaser and Strauss 1967; Strauss and Corbin 1998; Quinn 2005), much HSR subjects qualitative data to quantitative analyses. To develop questionnaires, many researchers simply code concepts and then sort them by frequency of mention (although this may not represent a concept's salience to a group). Beyond such classic content analyses, some mine transcripts for quotations to exemplify frequently mentioned concepts. (2)

This article provides a robust example of the type of actionable conceptual model building that can be done with focus group data using qualitative analysis techniques--in this case, simple techniques adapted from anthropological discourse analysis for use in applied HSR. Qualitative analysis provides a powerful tool for achieving a more holistic perspective on issues related to health care experiences and quality than quantitative analysis methods can offer, thus enhancing the applicability and utility of HSR.

METHODS

Subjects and Recruitment

Potential focus group subjects were identified through participation in the previously mentioned school-based study (R01 HS 010317). This study, which examined health care access, primary care, and health-related quality of life, surveyed parents at 18 elementary schools in the San Diego Unified School District. Schools were purposively sampled based on the proportion of target-language speakers (Spanish, Vietnamese, and Tagolog) and heterogeneity of SES as measured by percent of the school student body eligible for Federal free or reduced-price lunch programs. At selected schools, classes were randomly selected within grade. As part of the survey parents indicated their primary language and their willingness to be contacted for further research.

The sampling frame for the present project's focus groups, convened in Summer 2002, included parents who reported their child having a chronic health condition, who spoke English or Spanish, and who had consented to further contact (n = 246). Children with chronic conditions require more health care than normal and so it was assumed that their parents would be a rich and efficient source of data for understanding and developing strategies for overcoming barriers to care (Garwick et al. 1998). (3) The children had a wide variety of chronic conditions; asthma was the most common.

To ensure that parent perspectives were represented regardless of English proficiency, focus group parents were randomly sampled within language (language and other demographic data used to describe the present project's sample were collected as part of the original school-based research). Language groups for the present project were English and Spanish; only about 10 percent of San Diegans cannot speak these languages (Sanchez 2001). Because this part of the project (identifying barriers to care) was generative, no further a priori sampling stratification was done.

The study design called for quota samples of 10 English- and 10 Spanish-speaking adults who were parents (or guardians) of children with chronic health conditions. Given that each parent had extensive experience in health care seeking because of the children's conditions, and given the particular focus group methods that we would use, a sample size of 20 was deemed sufficient both for instrument development and for eliciting the depth of information necessary for descriptive and hypothesis-generating purposes, which do not depend on large numbers for power.

Potential participants were each assigned a random number and contacted in the random number order by telephone, or mail (if no working number), until quotas were reached. The study was described, and potential participants were invited to participate. In the course of achieving our quota of 10 Spanish- and 10 English-speaking participants, we cumulatively attempted to contact 27 English speakers and 32 Spanish speakers, or 59 of the 246 eligible adults. Of these 59 individuals, 20 (34 percent) had moved, leaving no further contact information. Of the 39 actually contacted, six (15 percent) refused.

We scheduled the 36 consenting individuals for focus group participation, knowing that some would not actually attend. Thirteen (33 percent) never showed up, even with repeat appointments. When 20 (51 percent of those ever actually contacted) had participated, recruitment efforts ended.

Focus Group Processes

Focus groups were conducted by a pair of facilitators (a moderator and a recorder) trained in health promotion and education and in focus group methods. Three focus groups were conducted in each language, for a total of six focus groups. On average the groups each included three participants. Small numbers of participants can be useful in experience-oriented research; smaller groups can yield less normative rhetoric and provide time for more in-depth discussion regarding particular experiences than is possible with large numbers of participants (Morgan 1997). (4)

The groups met for 2-hour sessions, which were audiotaped with participant permission. The focus groups were informal and the moderator was nondirective so as to generate as much experience-based narrative data as possible and encourage 'sharing and comparing' (Morgan 1997, p. 21) among the participants (generation of data through the interaction of participants is a key feature of focus groups). After informed consent was procured, open-ended discussions focused on (1) families' experiences in general with the health care system, (2) barriers to access, use, and receipt of quality care, and (3) strategies families have used to overcome these barriers. This 'funnel based' forum (Morgan 1997, p. 41), with its broad beginning and narrower ending, allowed for free discussion while ensuring an acceptable degree of comparability across groups. Families were compensated for focus group participation with $50 in gift certificates.

Data Analysis

A qualitative content analysis protocol designed by the first author was used to analyze the focus group tapes. (5) While not generally applied in HSR, the various techniques drawn on are commonly used in anthropological discourse analysis for identification, interpretation, and ordering of themes; a review of such techniques is found in Ryan and Bernard (2003). The protocol included triangulation through the inclusion of multiple researchers (Patton 1999) to offset possible concerns regarding subjective bias. It is described in full in a Web-based appendix to this article.

The form of analysis used for this project goes beyond simply counting (quantifying) terms or phrases. It aims to characterize the variously connected frames of reference that parents use to order their perceptions and understandings of the concepts (in this case, barriers) represented in those terms or phrases. These can be derived by carefully and systematically attending to the narrative contexts in which particular concepts are mentioned (Glaser and Strauss 1967; Bernard 1995; deMunck and Sobo 1998; Strauss and Corbin 1998; Patton 1999; Quinn 2005).

In brief, study staff listened systematically to all focus group tapes and carefully listed all barriers mentioned, bearing in mind the situation-specific contexts in which they were brought up (i.e., the narratives or story lines that they were part of) as well as negative cases or cases in which barriers were surmounted or mitigated. Rather than sorting listed barriers into a priori categories, researchers met together and named potential categories that emerged from their repeated, iterative reviews of the barriers. Category validity was ensured through a team approach in which all research team members individually considered and then together discussed and arrived at consensus regarding barriers and categories, and their definitions. In keeping with the methodological focus on meaning and experience, much discussion centered on the situation-specific contexts in which the various contested barriers were encountered.

In tandem with the category-development process, a process-based, experientially motivated conceptual model of parents' experiences of barriers to care was generated. The model sought to capture the experience of trying to access health care, and so the categories were arranged bearing in mind the temporal sequence of the clinic visit, the basic spatial parameters of the experience, and the cyclical nature of health care utilization. As categories solidified, the model was refined in an iterative and intersubjective process of reflection on the focus group findings (including negative cases) and in which rival hypotheses regarding the connections were proposed.

FINDINGS

The Sample

The sample is described in Table 1, which compares the sample to those eligible but not contacted, those who refused or did not show, and those who could not be contacted. The four groups were similar in terms of the relationship of the survey respondent to the child ([chi square](15) = 19.5, p = .192) and insurance status ([chi square](3) = 3.6, p = .31) (a proxy for access; see Halfon, Inkelas, and Wood 1995). The four groups differed, however, in terms of race/ethnicity ([chi square](9) = 22.3, p = .008), language spoken ([chi square](9) = 26.2, p = .002), and maternal education ([chi square](6) = 20.3, p = .002), because of the quota sampling scheme, in which Spanish speakers were oversampled. That is, those with whom we attempted contact (who fell into the categories of 'participants,' 'no show or refused,' 'could not contact') were more likely than the 'eligible not contacted' group to be Latino or Spanish speaking. Also, those contacted had a lower overall maternal educational attainment (Asians and whites were more likely, in the sampling pool, to have a college degree or greater; Seid, Stevens, and Varni 2003). (6)

Penetrating, Navigating, and Completing a Journey through the Health Care System

Findings from the BCQ can tell us how many people from what groups encountered which barriers and to what degree. These are important data. But what is the meaning of such quantifications in the everyday lives of respondents? Figure 1 depicts the process-oriented, experientially motivated conceptual model of barriers to care that can inform how analysts might answer this question.

[FIGURE 1 OMITTED]

In Figure 1, the barriers categories derived from the focus group transcripts are depicted as fitted against focus group members' expressed understanding of the formal U.S. health care system, which is seen as something that must be penetrated or to which entry must be gained before people can get access to or use system resources. The left-to-right flow of the model reflects the temporal sequence of the clinic visit as parents described it, as well as the basic spatial parameters of the experience. Importantly, it can accommodate the fact that no visit exists in isolation; each visit influences the experience of the next. The major barrier domains that emerge against this ordering are listed in Table 2.

In Figure 1, the formal U.S. clinical health care system occupies the middle rectangle or box. To the left are prerequisites to potential system access: having insurance, documentation (e.g., a social security number or proof of legal residence), money, language skills, and navigational skills, which include knowing the landscape of the system so that one can move through it (Sobo and Seid 2003). (7) And, as will become clear when the various parts of the system are discussed, the system itself was characterized as arbitrary, fragmented, and not child friendly (this is indicated in the horizontal bar superimposed on the rectangular health system box).

More narrowly encountered barriers are listed in the figure in relation to the parts of the clinical care system in which they are most often found. For example and to begin with, once a child's caregiver starts to try to penetrate the system (middle box), he or she has to negotiate access to a care site, for example by phone, as shown in the column just inside the health system box (under 'System Access'). This is often easier said than done: 'It's hard getting through. You have to call when you don't have anything else better to do with your time.' And 'Talking to someone who seems to have some kind of authority is impossible.'

Phone trees are very discouraging ('Push 1 for Mira Mesa, press 2 for da da da da. Is there a person at the end of this or what?!'). When a call from the health system is expected, 'You better be there when they call because if you do call their little extension, you still go through those phone trees.' Sometimes, 'the machine tells you it is full, from messages; it can't receive anymore.'

Questions relative to access go beyond whether one can make contact with the right health care worker by phone. They include (again, as shown in the first column inside the health system box) whether a timely appointment can be secured and whether office hours are compatible with a family's schedule. Having to wait too many days or weeks was definitely a problem; so were scattered appointments for parents of more than one child or a child with multiple providers.

Once a suitable appointment has been secured, a parent has to get him-or herself and the child to the care site (Getting There), which often entails long bus rides with packed lunches. Parents leave extra early, 'just in case the bus stops too many times.' Further, a parent has to balance other responsibilities (Balancing Priorities), such as to other children, or to a job boss, or to get dinner on the table by a certain time. As one parent said, 'The day that I have an appointment to the doctor was the time that I wouldn't pick up my house, wouldn't make meals. I would get home [and my husband would ask], 'So what did you do all day?' 'I was with the doctor!' [laughs].'

A parent who relied on a school lunch program and had multiple children and no after-school care-taking help explained, 'I have to take all of them and then I don't feed them ... I would have to pay to feed them.' Missed school also could be problematic, although it did mean that other children could be in school while the ill child was being taken to be seen.

Once inside the care site, represented by the larger square on the left side of the clinical health system rectangle, there is the front office to get through (Front Office, left side of smaller square). In the front office, parents reported office staff issues, such as encountering uncaring staff ('They answer you with a rude tone or sometimes they don't pay attention to you. They pretend that they haven't heard you') and overt prejudice. This included socioeconomic prejudice ('The more poor you look, the worse you are treated'), lifestyle prejudice (from a reformed drug user: 'They look at who they think I am'), and ethno-racial or linguistic prejudice. Rudeness was also encountered in the clinical staff, as the following story, which also contains elements regarding care quality and safety, demonstrates:

  

They were doing some tests on my girl and I took them [the papers]

to the lab and I always tend to look and see if it is the correct

name and everything and I noticed that it was the lab work of another girl. So then I went to complain with the nurse and she was

not pleased that I had found out this. I told her, 'What if you had given my girl another medicine,' and then it seemed that the nurse got upset and she thought that I didn't speak English and she went to complain with the receptionist.... I then understood everything that they were saying.... It was ugly how they were talking about me.... They.... speak Spanish but [are still] racist.

After dealing with reception and initial intake procedures, participants experienced long waiting times, during which, for example, 'The sick one is screaming and the well one is screaming because the other one is pulling their hair.' Then, they are left to wait again, with the sick child undressed in a cold examining room, which some think exposes ill children to possible further sickness. And, in the words of one participant, 'Then they have the audacity to knock on the door and ask you if you are ready.' Another explains:

    The  appointment is three o'clock; it's already three-thirty you  are    still there on the waiting room ... forty-five minutes before  they    call you to go inside. And then they will let you sit there....  There is an assistant ... and then you have to wait again for the  doctor ... another twenty minutes in there.... The kid is so sick,    he  will fall asleep in there already.... And then you have to pay    extra  on parking ... and they will only look and see your kids for    like  five, seven minutes. 

When finally seen by a doctor (Physician Visit; right side of small square in the clinical health care system box), the parents sometimes encountered differing health beliefs or ignorance about health facts because of the context of health system practice. For example:

    The doctors say that  we should give our children a bath when they    have a fever, but I have  noticed that in a hospital everything is    closed. We have the beliefs  about air currents, and the person is    going to be bathing the child  when there are many air currents in    the home, the air comes in, the  baby will die. 

Parents also dealt with what they saw as inexcusable incompetence:

    I'm  expecting that [the doctor] is going to check [the boy's] ears,  his temperature, I don't know--he doesn't do anything. He  looks in    and asks how he is doing and I say 'The same,'  then he prescribes    another thing.... Or they go to their books and  start reading, to    see what they are going to prescribe, what does he  have--If I    had a book on my side, then I wouldn't need to come  to the doctor. 

Parents commonly reported being practiced on, or being treated by doctors who were not trained in the right specialty, or who fixed the symptom but did not deal with the cause. At this point, if not before, parents sometimes albeit infrequently) packed up their children and left:

  I don't know how many things he was asking her, things that are not  appropriate. That time I got angry. She felt bad. She goes there  like--she had a high fever, she had a headache, she had vomited,    it  was the time when a virus was going around. That time, I got    mad and  I left the clinic.... If one is not happy, comfortable,    what can we  do? I'm not going to start arguing with them, I    wouldn't  win. Simply, if I'm not satisfied, I'm going to leave and  not go back. 

Not all parents were so immediately assertive. Parents sometimes endured intimidation and communication problems (with doctors not listening and not explaining things). In one story, the doctor 'didn't introduce himself ... had a brusque manner ... just prescribed medicine not saying what it was for ... and he was gone.' In another, the doctor asked the parent, ''Can't you get [the child] to stop crying?' He is a child.... If you don't have the bedside manner to deal with kids or [unclear], you shouldn't be in this business!' Another parent explained how hard it is to listen to instructions and participate in decision making: 'The doctor is giving medical attention ... with a toddler or preschooler for me, you are there and you are, 'Uh-huh, uh-huh' [to doctor]; 'Stop doing that' [to child]; 'Uh-huh'; 'Let go.''

Another problem was a lack of consistency in doctors: 'They don't even let me know that they have changed the doctor, when I'm already inside, an unknown doctor comes in.' The lack of consistency was problematic because each physician seemed to start from scratch, and 'They don't read the chart, because if they read the chart, they wouldn't ask you the same questions over and over' or 'prescribe their own prescription' instead of what the previous doctor had prescribed.

The referral system also proved problematic, as was coordinating information between insurer and provider, and among providers. 'They give you one thing and tell the doctors another thing, so I never know' said one participant. Another told of a particular situation in which a referral to an allergist was needed:

    My doctor is actually with [Group X] and she.... goes to  put a    referral in and would like to go through a [Group X] doctor  'cause    there is communication between the two and [the insurer]  will come    back and say, 'No, you have to go see a [doctor in  Group Y].' And    they just won't talk. So when I go to the  primary care--it's like    what happened--I mean, I'm not a  doctor. I'll say, 'Well, basically    they did this.' She  will ask me questions and it's like--you know,    I don't have  the answer. And there is no paperwork. I try to get    copies of things  and [Group Y] is obviously losing their records    on their end. So  it's like, I go in a circle. 

And just getting a referral is hard enough: 'It's usually me that has to get on their back and basically say 'come on''; 'I had to wait such a long time for him to be approved [for an operation] and the boy used to complain, that his ear hurt a lot and blood would come out of it, out of the ear, and I would take him to the clinic and they would tell me, 'No, until he is approved.'' The problem is not always with the payer, as the following story shows:

    We went to--my daughter, she broke her, we  didn't know it was    broken, she had a sore wrist so somehow we  ended up.... We  

didn't get particularly good service. We knew that something was wrong with it, but he wouldn't authorize.... When I asked him for a splint, there was nothing.

Throughout the health care journey, which often ended with perceived suboptimal care leading to a sense of deprivation and distrust ('marginalization'; see Seid et al. 2004; Kreps 1996), parents endured a sense of the system's fragmentation and arbitrariness. In other words, and as represented in the horizontal bar running across the health system box in Figure 1, rules changed from visit to visit ('change like the wind'), fees were inconsistent ('It all depends on who is there'), records were not sent from the lab to the office, referrals were delayed or not forthcoming, and paperwork went missing.

One child sent for an X-ray to an off-site location arrived there only to find that they were closed for the day. Another, according to her parent, 'kept having to get multiple blood tests and she hated that--she is only four--getting poked too many times and that is because they lost the records.' One caregiver received a prescription for medicine for her asthmatic grandson from a first doctor, only to have the next doctor who saw the boy disagree with the prescription that she had already spent her co-pay money on. She said, 'He goes, 'Oh ! don't want you to take that medicine.' And he dumps it in the trash. So, if you have a co-pay you then go, 'Oh.' So I learned my lesson.'

Access and care site features affect outcomes, but the opposite also can be the case, as shown by the arrow leading back from the outcomes box on the right in Figure 1 to the beginning of the visit chain (left side of figure). A negative feedback loop can be created when parents experience a sense of relative deprivation, distrust the system, and have their children still not cured. This can underwrite poor adherence and low expectations, and undermine the desire to return to the system for follow-up or repeat visits.

Surmounting Barriers

Barriers could sometimes be mitigated or circumnavigated if encountered. This generally involved learning, and then playing by (or figuring out how to positively manipulate) the rules of the system. ('You have to jump through hoops and you just got to play the system to be able to get what you want.')

It was true that the arbitrariness noted above, experienced perhaps because of quickly changing or capriciously enforced rules, or disagreement between various parts of the system, could make understanding the rules problematic; however, in some cases it could be done. For example, one participant shared what she had learned regarding asthma inhalers with her focus group: 'Always make sure you tell them to put at least two or three on a prescription, so you don't just go and get one inhaler for ten or twenty dollars which your co-pay is. You can get like three inhalers under the same prescription, so some doctors, you have to tell them that is what you want. They go, 'Oh, oh I see.''

Managing to get a direct number for a physician office was a strategy some used to get around the centralized appointing system that one common insurance carrier offered. Similarly, to get to an unlisted extension, one might call a known extension, and 'say, 'Oh, I'm sorry, I was trying to get this department.' They'll put you right through. That is how you do it.'

But such 'functional acculturation' to the health system (Sobo and Seid 2003) was only something that could be acknowledged by caregivers in hindsight. In other words, with few exceptions (completing paperwork being the primary one), not knowing how to do something was not listed as a barrier to care because people did not know that they did not know how to do that thing until someone else showed them what they could have been doing all along, or they happened on a strategy that advanced their quest for high-quality pediatric care.

'A lot of times,' one parent said, 'I'll kind of go around the receptionist and talk to them in the back.... They will tell me what other people have done to get what they needed to get.' And parents sometimes had to 'be very, very assertive'; for example, 'even getting a referral, it's usually me that has to get on their back and basically say, 'Come on.'' One parent related a situation requiring her to 'get ugly,' or take loudly assertive action. She said, 'You shouldn't have to do that.' But as another noted, 'We had to fight so hard for our children.'

DISCUSSION

Implications

The conceptual model that we have described represents the experience of the parent trying to access health care for his or her child. It illuminates the findings of the quantitative project that it stems from, enriching our understanding of the fact that, for example, many of those reporting poor primary care experiences belong to groups traditionally thought as having good experiences of primary care. It contributes to the conceptualization and operationalization of the construct of barriers to care described in the introductory section of this article. It furthers the conceptualization of barriers to care as a multidimensional construct, as potentially impacting children's health care at several points in the care process, and as distinct from, yet related to SES and race/ethnicity. Importantly, it addresses, in depth, the processes by which disparities may arise. It thereby supports a more robust, practical, and actionable understanding of the construct of barriers to care.

The model also contributes to the ongoing discussion contrasting the patient experience with patient satisfaction. A distinction has been made between self-reported experiences with health care delivery and ratings of satisfaction with health care delivery (e.g., 'How satisfied were you with your wait time?') (Flocke 1997; Starfield et al. 1998). Satisfaction ratings depend upon an individual's expectations, such that high satisfaction may result when low expectations are met (Dougall et al. 2000). For example, if one expects to wait 4 hours to be seen, then a 3-hour wait time might be rated as very satisfactory. Therefore, satisfaction research yields few suggestions regarding how the health system can be improved (Starfield et al. 1998). Patient experiences, however, can be compared with specific prescriptive criteria (e.g., that wait times be less than 1 hour) (Bindman et al. 1996). As such, criterion deviations can actually index areas for improvement. Parents' experiences of pediatric care, as we have described them here, have many implications then for organizations interested in improving the care experience.

While the stories represented in the model's parts may be very familiar to those working on the front lines of health care, in HSR circles the phrase 'barriers to care' often serves as shorthand for lack of insurance or of English proficiency (but see Friedman 1994; Halfon et al. 1995). Importantly, the experience of low-quality care is not recognized as a barrier to future care because traditional HSR barriers models assume that all care is good care. The model generated through our research questions that assumption.

The model also contributes to the barriers to care debate because it is comprehensive and patient centered. It considers the entire health system. It includes items generated by parents themselves, as opposed to health services researchers, and positions parents as quite capable of being innovative, active care team members, as opposed to passive recipients of care. It shows that lack of health care services background, or low functional biomedical acculturation, is itself a major barrier to maximizing service provision (Sobo and Seid 2003). Further, it considers the outcomes of experiencing the barriers noted and shows how they contribute later on to suboptimal use of the system by parents.

Methodological Keys

The model could not have been created without the adoption of a more holistic orientation toward the data than is typical in HSR. This entailed a focus group process designed to garner extensive experience-based narrative data from each participant, a concentrated qualitative data analysis phase, and the inclusion of data collection staff in the analytical endeavor.

All five of the category-development sessions were conducted within a 10-day time period and all investigators were available to concentrate on the process. Immersion in the analytic endeavor is key to the validity and reliability of the products of the data reduction process used. It is crucial that, for this type of analysis, meetings are closely sequenced, time to reflect on meeting discussions and data in between meetings is provided, and researchers are not distracted by other substantive projects or data during the intensive analytic phase.

Qualitative research is not amenable to outsourcing the various components of a project because of the centrality of holism and interpretation to its epistemological basis. This point is paramount. Traditional ethnographically oriented qualitative researchers demand research designs in which one researcher conducts all study functions. For HSR, at the least, each team member's participation in the analysis must be informed by actual participation in data collection. No shortcuts can be taken.

Limitations

The model does have limitations. For example, although it accounts for experience with the system and positions each visit as part of a cycle rather than an isolated incident, it does not account for the impact of vulnerability factors such as SES; it therefore cannot show how more vulnerable parents experiences are in any way different from those of less vulnerable (e.g., wealthy, white) individuals. The difference between, for example, poor and affluent parents' experiences may lie in the quantity. (8) of barriers encountered rather than in what the barriers are to begin with. Encountering more barriers may underwrite marginalization, the internalization and personalization of disempowering experiences within the health care system (Kreps 1996). This may be especially so in persons already marginalized by mainstream society because of skin color, language, poverty, gender, or other factors. Marginalization may in turn lead to low adherence and limit interest in pursuing follow-up care, negatively impacting health outcomes. We can also speculate that parents with little bureaucratic experience and little scientific background may feel more marginalized than others by the health care system and therefore may find care barriers particularly daunting.

Secondly, the model cannot represent every parent's actual and specific personal experience. This is normal in studies where findings are aggregated as were ours. Moreover, because the model is a composite, it reflects a general schema inferred from the analysis of all participants' explications and comments. In other words, not all parents had such explicit conceptualizations of the health care system.

A related limitation stems from the fact that we did not use participatory methods in drafting the model. Some of the category labels, such as 'navigational skills,' are our own; our choice to impose them, and our use of clinic-isolating temporal and spatial frameworks to help organize the categories, reflects our aim to generate a model that has broad health care applications, and that is, accordingly, comprehensible to health care workers. (9)

Having said that, our focus on the parents' perspective may need further translation for actual use in health care settings. That is, because of their experience within the system, health care workers may not be able to see barriers from parents' point of view. Despite ample evidence regarding organizational and provider contributions to disparities in care (van-Ryn and Burke 2000; Smedley et al. 2003; Good et al. 2003), health care workers may hold an occupational bias and exhibit defensiveness rather than empathy. For example, two physicians viewing a first draft of the model pointed to patients' missed appointments and other forms of perceived nonadherence in defense of some of the practices that parents found problematic, such as overbooking. The limitations of such bias are part of the reason for the present interest in patient-centered care that this research seeks to address.

CONCLUSION

Because of our qualitative approach, findings from the original quantitative study suggesting that traditional marker variables failed to capture substantial variation in primary care experiences were illuminated. Further, the quantitative BCQ generated as part of the research described here (Seid et al. 2004) is a better tool than it otherwise would be. (10) Its questions are more reflective of parent experience than they would have been using traditional (quantitative) content analysis alone. And in future research using the BCQ the validity of interpretations of BCQ findings can be enhanced through use of the model of parent experience we derived.

Our goal in describing our experientially motivated conceptual model of parent experience is not to shift the competency burden to the shoulders of already vulnerable and disenfranchised health care consumers. Rather, it is to raise awareness in the biomedical world of the essential strangeness of the system, and to create a bridge between two worlds--a bridge that can lead to measurable increases in quality of care.

Our focus on parental report also does not imply that the locus for intervention must be at the individual level. Although barriers are encountered on the individual level, they are generated and maintained by, and organized according to, higher-order social structural arrangements (Singer et al. 1992; Loustaunau and Sobo 1997). Although we cannot, in the context of this research, alter macrolevel social structures, we can identify modifiable barriers that have the potential to affect entire patient populations, not just individual families. Hypotheses generated using the model can be tested in future HSR studies.

For example, one popular intervention aimed at increasing patient centeredness and decreasing health disparities is cultural competence training (Brach and Fraser 2000). But as the findings described here show, health care workers are not the only people who need to become competent in cross-cultural exchange. Policies and programs must ensure that patients and families, too, are provided education and assistance so that they can navigate the health care system, which, as anyone who has known or has been a patient knows, is a culture unto its own. The barriers to care model that we have described can help us to gain insight into (testable) ways to better equip all health care consumers with the cultural competence necessary to navigate the biomedical world (Sobo and Seid 2003).

The information provided in this article will be of value to health care workers, program planners, and policy makers who seek to understand why parents sometimes act in ways that seem, on the surface, nonsensical or counterproductive, and to address parents' needs in a truly patient-centered fashion. Moreover, they will be useful to those who seek to improve parents' experiences of, and thereby change their responses to, the pediatric health care system. Doing so will help to reduce health disparities by increasing each child's likelihood of receiving the highest quality health services available.

ACKNOWLEDGMENTS

The 'Barriers to Care for Chronically Ill Vulnerable Children' project that this paper describes was funded by the Agency for Healthcare Research and Quality (R03 HS 013058; Michael Seid, PI), as was the original study referred to (R01 HS 010317). Gabriela Hussong assisted with the focus groups. Versions of various parts of this article were presented at the 2001, 2002, and 2003 annual meetings of the American Anthropological Association; panel organizers and co-organizers included Lauren Clark, Elisa Gordon, Suzanne Heurtin-Roberts, and Robert Schrauf. Final revisions were completed with the support of Allen L. Gifford, VA San Diego Healthcare System, Health Services Research and Development. The authors have no disclaimers or disclosures to report.

SUPPLEMENTARY MATERIAL

The following supplementary material is available for this article online:

APPENDIX S1. Qualitative Content Analysis Protocol for Developing Process-Oriented Models in Health Services Research: Case Example

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NOTES

(1.) We define vulnerability to poor health outcomes, after Aday (1993), as an individual's risk for poor physical, psychological, and social health. Vulnerability is often represented by social status (age, sex, race), social capital (family, community), and personal capital (SES, language ability) factors that affect the risk of poor health outcomes (Aday 1993). We would add to this vulnerability as measured by degree of functional acculturation to the biomedical system (Sobo and Seid 2003). Vulnerability has been shown to affect access, continuity, and care coordination (Newacheck, Hughes, and Stoddard 1996).

(2.) Another problem precedes analysis: many HSR focus groups are highly formalized affairs in which moderators take a very directive approach and rely on highly structured elicitation activities. Participants generally acquiesce to a directive moderator, keeping silent regarding ideas that do not overtly fit the moderator's data-limiting approach. In addition, formal exercises can occupy much of the focus group's time, eclipsing the time spent in open-ended, interactive discussion among participants.

(3.) Documented disparities are compounded for children with special health care needs (CSHCN), who use substantially more pediatric health care services than their healthy peers (Newacheck et al. 1998) and account for the majority of pediatric health care costs (Ireys et al. 1997). The importance of timely access to high-quality health care is greater for these children (Newacheck et al. 1996). Yet a substantial minority of CSHCN experience significant barriers to care (Newacheck et al. 1998), in particular to specialty care (Fox, Wicks, and Newacheck 1993; Newacheck et al. 1996).

(4.) Group size ranged from two (one group) to five participants. Some researchers may call small focus groups 'group interviews'; however, as focus group expert David L. Morgan (1997) notes, the term 'focus group' should be understood as an umbrella term, designating a ''big tent' that can include many variations' (p. 6). Morgan further points out that the purpose of a research project and field constraints are more important than the six to 10 participant rule of thumb in determining ideal group size. Although little empirical research has been done, Morgan endorses smaller groups when participants are highly involved in the topic at hand, and when researchers desire a clear sense of each participant's experiences (p. 42), as in this particular project (Morgan 1997).

(5.) The protocol was developed when it became clear that a priori (HSR) categories could not accommodate the data.

(6.) We used maternal education as a proxy for SES, as more educated mothers may be able to access care, communicate, and assert their child's needs more effectively (Heck and Parker 2002).

(7.) We do not discuss these prerequisites here because our focus is barriers to quality care for those who already have potential access to the health care system.

(8.) This is something that the quantitative BCQ will measure.

(9.) Participants' frameworks included other health systems, such as in Tijuana (Mexico), unauthorized allopathic systems or underground clinics encountered in the U.S., and complementary or alternative systems of health care. Further, some discussed hospital inpatient as well as outpatient and ambulatory care (the model focuses on the latter).