PURPOSE OF THIS PA
The purpose of this initiative is to solicit research to improve self-
management and quality of life in children and adolescents with chronic
diseases The study of children within the context of family and family-
community dynamics is encouraged Children with a chronic disease and their
families have a long-term responsibility for self-management of their
health and illness The child with the disease will have a life-long
responsibility to maintain and promote health and prevent complications of
the chronic disease Research related to sociocultural, environmental, and
behavioral mechanisms as well as biological/technological factors that
contribute to successful and ongoing self-management of particular chronic
diseases in children is encouraged Proposals that include factors specific
to age,
developmental stage, family, community, culture, race/ethnicity, or social-
contextual issues are also encouraged
RESEARCH OBJECTIVES
Chronic diseases, for this announcement, are defined as illnesses that are
lifelong in duration, treatable but rarely cured completely, and require
persistent self-management behaviors that are shared by the child and
family
The disease
and health self-management behaviors required are ongoing
rather than infrequent and intermittent Note also that the NIH definition
of children is anyone under the age of 21
The first goal of Healthy People 2010 is to help individuals of all ages
increase life expectancy and improve their quality of life Chronic
diseases that begin in childhood present a special challenge to both
quality of life QOL and life expectancy For example, severely obese
children and adolescents have lower health-related QOL than children and
adolescents who are healthy Overweight is a chronic health condition that
often begins in childhood, contributes to the risk of disease-associated
morbidity, and requires self-management activities The prevalence of
overweight among children in the United States is continuing to increase in
most populations, and especially among Mexican-American and non-Hispanic
black children and adolescents Chronic diseases and other chronic health
conditions are estimated to occur in 20 to 30, or 12 to 18 million, of the
children and
adolescents in this country Seven to eight percent of children aged 5 to
17 have activity limitations due to one or more chronic health
conditions
These limitations often go beyond the physical state There can be a
social stigma among affected children who often are socially ostracized
This tends to intensify the underlying psychosocial determinants that lead
to inappropriate self-management behaviors Enhanced awareness and greater
self-management early on could help prevent exacerbation of the chronic
illness or condition,
and the associated adverse health outcomes Children are affected by
numerous chronic conditions, including, but not limited to, diabetes,
chronic kidney disease, juvenile rheumatoid arthritis, epilepsy, cystic
fibrosis, asthma, developmental disabilities, obesity, cerebral palsy,
sickle cell disease, hemophilia, congenital heart disease, HIV/AIDS,
genetic and other birth defects, low birth weight sequelae, and traumatic
injuries Although each chronic illness has distinct biological processes,
there are numerous commonalities with respect to psychosocial, lifestyle,
economic, quality of individual and family life, and health that have
impacts on the child and family
Chronic illnesses affect the child throughout his/her life and also affect
the family unit The impact of day-to-day requirements,
complexity of
disease management activities, lifestyle, and family dynamics all may
influence the effectiveness and long-term success of self-management and
the health outcomes Furthermore, chronic health conditions may affect the
financial status, and social, community, and school interactions of the
child and the family The effectiveness of the management of the chronic
illness, and its related health outcomes, depends on many family and health
care system factors
The child or adolescent is affected personally by the pathology of the
disease and by the required lifestyle and health management daptations The
family are involved in the childs chronic illness management through
requirements for care assistance, supervision/guidance, travel and time
from work for health visits or hospitalizations, cost of care, and the
impact of these requirements on family dynamics and lifestyle It may be
that health care providers have underestimated the complexity of the child
and family needs related to personal responsibility and self-management
actions
Although there has been a focus in recent years on the self-management of
chronic illness, most of this research has occurred in adult
populations
Adherence studies that focus on a subset of the self-management process in
children are most evident in the areas of asthma, diabetes, and HIV/AIDS
More research is needed on chronic illness self/family management in
children and adolescents and intervention testing for relevance in this
population, including diverse groups within the larger population of
children with chronic diseases
This section describes a few examples of the many chronic health conditions
that occur in children and require long-term self-management to reduce
associated morbidity and mortality The Health and Retirement Study,
conducted in 1996, found that poor childhood health increases morbidity in
later life
This association was found for lung disease, cardiovascular conditions,
arthritis/rheumatism, and cancer There is other evidence that children
with poorly controlled diabetes could be included in this list as well
While there are little sound epidemiological data on childhood chronic
illnesses as a group, there are data for individual diseases
In the US, asthma is the most common chronic disease of childhood and, in
1999, the estimated annual cost of treating asthma in children in the US
was
32 billion Children with asthma miss about 10 million school days
each year The prevalence of asthma in children aged 0 to 17 years is
reported in MMWR 2000 as 68 with increases of 5 per year for the years
1980-1995
About 16 million children have diabetes There is a significant increase
in type 2 diabetes in children and adolescents Data culled from diabetes
clinics in several locations suggest that the percentage of children
diagnosed with diabetes who are classified as having type 2 diabetes has
risen from less than 5 percent prior to 1994 to 20 to 30 percent after
1994 Children who go undiagnosed until they become symptomatic may have
been hyperglycemic for many years and are at high risk of developing
diabetic micro- and macrovascular complications These potential long-term
and serious complications support the
need for proactive self-management from diagnosis onward Children who have
insulin-requiring diabetes are three times more likely than their
classmates to be hospitalized
About 285,000 children have juvenile arthritis Juvenile arthritis has long-
term functional ability implications that may be improved with appropriate
self-management behaviors The incidence of
end-stage renal disease ESRD
in patients age 0 - 19 years in the United States is 15 per million people,
according to the 2002 USRDS Annual Data Report Exact numbers for patients
who have chronic kidney disease, but do not yet require dialysis are not
available, but are certainly higher than for those with ESRD
Children with a chronic disease face a lifetime of careful health
management requirements and lifestyle adaptations to prevent or manage
related health complications Interventions that make a difference in
childhood disease self-management may set the stage for health outcomes
later in life
Scope
This announcement invites proposals for research focused on self-management
in children with chronic diseases Within this larger population of
interest, it is desirable to see a range of study populations including
representative as well as understudied groups including, but not limited
to, specific racial or ethnic, rural, or economically disadvantaged groups
The chronic diseases identified in this announcement should not be viewed
as the only chronic
diseases of interest Interventions that have broad application across
child and adolescent populations and chronic diseases are
of particular
interest Understanding of heretofore unexplained cultural
meanings/behaviors, family, child viewpoint, socio-contextual,
psychosocial, and other factors relevant to child and adolescent chronic
disease self-management are also of interest
This announcement is open to descriptive studies that address important
gaps in knowledge in order to provide direction for future interventions
and to interventional studies that have strong translation potential for
diverse settings and groups
Areas in which such scientific opportunities exist include but are not
limited to:
o Examine the influence of common management factors such as quality of
life, psychosocial, culture, ethnicity, age, socioeconomic status,
developmental stage, or social-contextual issues on chronic disease self-
management in children
o Examine factors that promote the transfer of different levels of self-
management responsibility to the child, including the relationship of age
or stage of development
o Determine whether approaches to self-management established in adults may
be adapted to children with chronic diseases examples: improved self-
efficacy, cognitive strategies, social support,
provider/child/family
partnership
o Test interventions that improve child and family functioning, self-
management, quality of life, biologic status, and health outcomes with
management requirements of a childs chronic condition
o Test self-management interventions for children in rural areas, medically
underserved settings, and in racial/ethnic groups or explore factors that
create barriers to self-management in these groups
o Examine factors that are effective in sustaining proactive self-
management behaviors and integrating them into routine lifestyle school,
home,community activity across developmental stages of the child
o Explore the impact of a child having a chronic illness on peer
relationships, siblings, parents, and on family member roles and how that
impact may affect self-management effectiveness
o Examine whether, or in what ways, diverse family constellations such as
single parent, extended families, grandparents as guardians, or same-sex
parents affect self-management of the childs chronic illness
o Evaluate the impact of advances in treatment and technology on the
management of chronic illness conditions in childhood and adolescence
o Test interventions for
family coping in chronic conditions that result in
periodic acute illnesses, hospitalizations, or invasive therapies in regard
to seamless care, coping during acute phases, and the child/family/provider
partnership
Critical analysis papers: For this assignment, you will write and submit 2
brief, critical, and well-developed, arguments on any of the required
articles assigned on the syllabusYou may not write a reaction after
hearing it lectured in class Also, if more than one article is assigned
for the day, you can only choose one to write on This will assure that you
try as many different topics as possible A page and half to two pages is
sufficient
The analysis should consist of a brief summary, and then a thoughtful
commentary on one or two issues either raised by the article or related
ideas you thought of while reading the articles It must be more than a
simple chatting about the paper I must be able to clearly see that you
have read the paper, tried to engage with the material, and constructed
your thoughts in a logical manner Show both appreciation and criticism
For example, what worked in the authors argument and what did not? Do more
than summarize, aim for a
meta-analysis where you discuss the implications
and your intellectual associations to the authors argument You must
present supporting direct quotes pulled from the article to help illustrate
your point Create a unique viewpoint, connect the article to other world
events that concern like issues in the news, or develop a sophisticated
argument that connects the most important parts of the article in relation
to the main topic of the week
1 An introduction that describes the content and history of the
television program
2 A body of the paper that is split into 3 or more subtitled sections,
eg Violence, Role Modeling, etc In each of these sections develop
an argument, for example, that the show promotes violence Be sure to
give helpful examples taken directly from the program, eg how many
times a character shoots another, etc You are required to support
your argument by referring to the text and course articles and by
providing direct quotes In addition, but not as a substitute for
using course materials, you may also conduct your own library search
and provide your own references — I will look upon this favorably and
as an expression of your scholarship
3 After you have developed your argument, include a summary section
where you draw conclusions and implications from the argument you have
presented Aim for at least 3/4 of a page or more here
4 Provide a list of APA style reference
Engagement paper: This paper will be a 2-3 page discussion of one of three
topics given to you in advance You will have to synthesize readings and
lectures related to the topic and then provide a critical discussion of the
related material You will end with your personal comment on the topic
chosen
Research paper: This final paper should be between 5-6 pages You will
choose any topic related to children and television and will analyze a
television show that best represents your topic While writing the paper,
you will begin with a summary of related literature, explain the method of
analysis used, describe the results of the analysis, and end with a
critical conclusion Worth 30 of final grade
5 s
Source:menshealthnetwork.org
