IACAPAP Textbook of Child and Adolescent Mental Health

Chapter

J.7

MISCELLANEOUS

THE UNITED NATIONSCONVENTION ON THE RIGHTSOF THE CHILDAND IMPLICATIONS FOR CLINICALPRACTICE, POLICY AND RESEARCH
Myron L Belfer & Suzan Song*Myron L Belfer MD, MPA
Professor of Psychiatry,
Harvard Medical School andChildren’s Hospital Boston,
MA, USA
Conflict of interest: None
declared.

Suzan Song MD, MPH (*Cofirst author)
Post-doctoral Fellow,
Department of Psychiatry and
Behavioral Sciences, Stanford
University Medical Center, Palo
Alto, California, USA“The child shall be registered
immediately after birth and…
have the right… to a name…
a nationality… [and] topreserve his or her identity”

Conflict of interest: None
declared.

Convention: articles 7 & 8.

Acknowledgement: This

This publication is intended for professionals training or practicing in mental health and not for the general public. The opinions
expressed are those of the authors and do not necessarily represent the views of the Editor or IACAPAP. This publication seeks todescribe the best treatments and practices based on the scientific evidence available at the time of writing as evaluated by the authorsand may change as a result of new research. Readers need to apply this knowledge to patients in accordance with the guidelines andlaws of their country of practice. Some medications may not be available in some countries and readers should consult the specific drug
information since not all dosages and unwanted effects are mentioned. Organizations, publications and websites are cited or linked toillustrate issues or as a source of further information. This does not mean that authors, the Editor or IACAPAP endorse their content or
recommendations, which should be critically assessed by the reader. Websites may also change or cease to exist.
©IACAPAP 2012. This is an open-access publication under the Creative Commons Attribution Non-commercial License. Use,
distribution and reproduction in any medium are allowed without prior permission provided the original work is properly cited and theuse is non-commercial. Send comments about this e-book or chapter to jmreyATbigpond.net.au
Suggested citation: Belfer ML, Song S. The United Nations Convention on the Rights of the Child and implications for clinicalpractice, policy and research. In Rey JM (ed), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International
Association for Child and Adolescent Psychiatry and Allied Professions 2012.

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IACAPAP Textbook of Child and Adolescent Mental HealthThe United Nations (UN) Convention on the Rights of the Child (Convention)and subsequent related documents have the potential for greatly improving
the lives of children (birth to 18 years of age, but dependent on culture)
in several dimensions, offering protection from abuse, strengthening children’s
relationship with families and ensuring the realization of individual potential.
These documents go well beyond having implications for governments and should
be considered in relation to all professional activities that impinge on the lives ofchildren including clinical practice, research, participation and education.
Currently, there is tension between the community of “disabled” and thosewith “mental disorders” with significant implications for progress in child related
human rights. Is a mental disorder a “disability”? Will inclusion of those withmental disorders weaken or distort advocacy for those with non-mental disorderdisabilities? At a time when there are great opportunities for advocacy this issue
needs to be addressed because in the current era it may be one of the greatest
barriers to the promotion of the needs of those with mental disorders in thecontext of human rights as put forth in the Convention and the recently adopted
UN Convention on the Rights of People with Disabilities (CRDP). The issues of
exclusion and disenfranchisement are common to all with disabilities and certainly
to those with mental disorders.

chapter is in part based on achapter to appear in“Mental Health and Human
Rights” to be published by
Oxford University Press
entitled “Missing voices:
Speaking up for the Rights ofChildren andAdolescents with Disabilities”
prepared with Diana
Samarasan. The views
expressed in this chapter do
not necessarily reflect those of
Ms Samarasan.

The historical understanding of children and childhood must be appreciatedto realize how children, in particular, can suffer drastic consequences as a result of
being considered disabled (Hibbard & Desch, 2007). In the modern history ofcivilization children were seen as property (Slee, 2002). The role of children was
to increase the productivity of the family and propagate to continue the familyline (Slee, 2002). There was, until the past century, no concept of a developingchild with potentials that could be enhanced or thwarted by environmental or
attitudinal factors. There was little understanding of a developmental trajectoryfor children and that they were not simply little adults. Lastly, in many cultures it
was felt that children should be seen and not heard and that they did not have a claimon the right of inclusion. Both because of a better scientific understanding ofchild development and the evolution of social thinking, children are now viewed
differently by many, but certainly not by all segments of society. However, thepotential of children with disabilities, for the most part, continues to be ignored:“…widespread underestimation of the abilities and potential of children withdisabilities creates a vicious cycle of under-expectation, under-achievement andlow priority in the allocation of resources.” www.unicef-irc.org
Emotional and behavioral problems affect between 10% and 20% ofchildren worldwide (Belfer, 2008). Recognizing childhood emotional andbehavioral problems in the context of disability rights, remains a challenge and,to date, has not had the prominence warranted (Stewart-Brown, 2003). Data on
the cost to society of mental disability in children is yet to be fully calculated, but
the studies that are available show dramatic costs, comparable to those of otherdisabilities and with equal issues related to participation in society. The emotional
and physical disability resulting from exposure to war, famine, disasters and HIV/AIDS is nearly incalculable. The approaches to understanding and intervening
in these situations not only involve concerns with the rights of children, in theusual framework, but extend to those who seek to engage in research with thesevulnerable populations. This chapter attempts to focus a light on the barriers which

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IACAPAP Textbook of Child and Adolescent Mental Healthchildren with disabilities continue to face in being considered active members ofsociety, and the need for responsible research.

CONSEQUENCES OF DISABILITY
In many countries, children with disabilities are placed in institutions at birthor as toddlers and remain there until death. All available data show that children
in institutions do far worse socially, educationally, medically and psychologicallythan children raised in supportive community settings (Groce & Paeglow, 2005).
Human Rights Watch found that the death rate among institutionalized children
with disabilities was almost twice that of the general population and of children
kept at home. In some institutions in some countries the mortality rate exceeds
75% (Human Rights Watch, 2001).
According to the United Nations and UNICEF, girls with disabilities aretwice or three times more likely to experience sexual and physical abuse thantheir non-disabled peers. Where the ability to contribute economically to family
survival is critical, children with disabilities have little value other than as objects
displayed for pity or money. The most common employment around the world
for disabled people is begging (Groce, 1999). Isolation both self-imposed andsocially created is common, particularly for those who look different.

CONCEPT OF PARTICIPATION
Approaches to clinical care for people with disabilities are too often
conceived from a deficit model focusing on individual impairment. This hasconsequences for how the person is viewed and unreasonably limits expectations.
The Convention (article 12) redefines the role of children in society as participants
and, through their participation, as critical contributors to their own health andthat of the community in which they live. If the clinician and policymaker movefrom a deficit model to the concept of maximizing participation and focus on thebarriers faced by people with disabilities in seeking full participation, then many
opportunities for creative programming are opened. It requires a considerable shift
in the mindset of clinicians and policymakers but once adopted can be seen as
freeing up opportunities or identifying barriers that can readily be overcome.
The efforts to include children and adolescents in mainstream education
have met with varying levels of success. Low and middle income countries, as
defined by the World Bank, have demonstrated some of the more innovative
approaches, often out of necessity.
The World Health Organization has attempted through the International
Classification of Impairments, Disabilities and Handicaps (ICIDH-2) todisseminate a model for professionals to use to approach care for people who have
impairments from the perspective of participation. The ICIDH-2 covers three
dimensions of disability:• Impairment in bodily functions and structures• Limitation in activity, and• Restriction in participation.

RIGHTS OF THE
CHILD
The first United Nations
statement devoted
exclusively to the rightsof children was the
Declaration on the Rightsof the Child, adopted in
1959. This was a moral
rather than a legallybinding document. In
1989 the legally binding
Convention on the Rightsof the Child was adopted
by the United Nations. In
54 articles the Convention
incorporates the whole
spectrum of human rights—
civil, political, economic,
social and cultural—andsets out the specific ways
these should be ensured
for children and young
people. In May 2000,
two Optional Protocols,
one on the involvementof children in armed
conflict and a second on
the sale of children, childprostitution and childpornography, were adopted
to strengthen the provisionsof the Convention in thoseareas. The Convention
on the Rights of the Childis the most endorsed
human rights treaty in theworld, ratified by all but
two countries. View theConvention and related
documents by clicking on
the picture below.

This classification recognizes that someone with an impairment may or may
not have a limitation in activity or even a disability, depending on the environment

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IACAPAP Textbook of Child and Adolescent Mental Health“…the child who is capableof forming his or her own
views [has] the right toexpress those views [and]the right to freedom of…
thought, conscience andreligion.”
Convention: articles 12-14.
Photo : http://syinghana.com/?p=137

Click on the picture to view a short animation explaining
the Convention to children (by the Children's Rights
Alliance) (www.childrensrights.ie)
Table J.7.1 The United Nations Convention on the Rights of the Child summarized according toarticle (Carlson, 2001).
Principles

Provisions

Protection

Participation

A2: Non-discrimination

A5: Guidance

A19: Abuse and neglect

A13: Expression

A3: Best interest

A7: Name/nationality

A21: Adoption

A14: Thought

A6: Survival anddevelopment

A8: Identity

A22: Refugee

A15: Association

A12: Respect for child’s
views

A9:Parent separation

A32: Labor

A17: Information

A16: Privacy

A33: Drugs

A18: Responsibilities

A34: Sexual exploitation

A24: Health

A35: Abduction

A25: Social security

A37: Torture and deprivation ofliberty

A27: Standard of living

A38: Armed conflict

A28 and A29: Education

A39: Rehabilitative care

A31: LeisureA40: Juvenile justice

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IACAPAP Textbook of Child and Adolescent Mental Healthand society (Clark & MacArthur, 2008). The human rights approach to disability
also shifts the focus from the limitations of individuals to the barriers withinsociety that prevent the full participation of people with impairments on an equalbasis with others.

UN CONVENTION ON THE RIGHTS TO THE CHILD
The content of the Convention by relevant article is summarized in Table
J.7.1. The Convention clearly advocates for the inclusion of all children in the life of
the community with strong recommendations for access to education and services.
Furthermore, it argues against discrimination of any kind. However, experience
with the Convention has shown that it has lacked meaningful implementation(WHO, 2005). In particular, children and adolescents with disabilities, including
psychosocial disabilities, have not seen meaningful inclusion.
The Convention has been incorporated into national legislation in at least
50 countries, but fewer countries have implemented programs to operationalize
the provisions of the Convention. National independent human rights institutions
for children have been established in some countries leading the effort to provide ameaningful realization of children’s rights (Pais & Bissell. 2006).

UN CONVENTION ON THE RIGHTS OF PERSONSWITH DISABILITIES
Going one step further, the CRDP, drafted with the strong activism
and unprecedented participation of persons with disabilities, mandates theinvolvement of people with disabilities (including children with disabilities)
and their representative organizations in the implementation and monitoring of
programs concerning them.

Click on the picture to view
document

The CRDP attempts to address a gap in justice which has occurred not
because people with disabilities were explicitly excluded from other more general“…a child shall not be
separated from his or her
parents against their will…
[and shall be permitted tocross national borders] for…
family reunification….”
Convention: articles 9 & 10.
(Source: http://www.creativespirits.
info)

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IACAPAP Textbook of Child and Adolescent Mental Healthhuman rights legislation (in fact, in the Convention, children with disabilities were
specifically included), but because the moral platform which is used to interpret
such documents has been skewed to leave out certain populations. The social
model of disability, from which the Convention and CRDP are derived, places theobligation for inclusion squarely back on the shoulders of society. In this model,
disability is not inherent in the person but rather, occurring with the interaction
between a person with impairment and societal, attitudinal and environmental
barriers.
In a way, the existence of the CRDP points to the fact that it is (again) the
larger philosophical construct of the omnipotent “we” which is the problem. Since
the Enlightenment, as previously marginalized segments of society have demanded
and realized their voice, the conception of who “we” are has gradually expanded.
Sixty years after the adoption of the Universal Declaration on Human Rights,
thanks largely to the persistence of the disability rights movement (whose slogan
is “nothing about us without us”), there is recognition that disability is part of thehuman experience.

Click on the picture toview a video on dealing
constructively with disability
discrimination in sport.

As law professor Amita Dhanda writes, “It is my view that the Convention
on the Rights of People with Disabilities has done the following for persons withdisabilities: it has signaled the change from welfare to rights; introduced the equality
idiom to grant both the same and different to persons with disabilities; recognizedautonomy with support for persons with disabilities and most importantly madedisability a part of the human experience” (Dhanda & Narayan, 2007). Whether
the CRDP and the growing disability rights movement will give a voice to children
remains to be seen.
Rights-based approaches to children with disabilities
It is an indictment of society that children and adolescents have notseen meaningful inclusion and participation when they have been born with
impairments or suffered disability. Remedies have been proposed, and in somecases demonstrated to be effective, but their implementation is patchy and often
not sustained. Two prominent examples of initiatives to address the lack of voice forthe rights of children with disabilities are the Guardianship Councils in Brazil andthe Social Charter of the European Union. These are very different approaches but
both draw heavily on legal remedies and due process with respect for the plaintiff.
Guardianship Councils
The 1988 Federal Brazilian Constitution emphasized popular participationin governance. Municipal Participatory Administrative Councils were formed.
The child rights perspective embedded in the authorizing legislation andimplementation has transformed a disadvantaged population of children into
a population of citizens whose current and future rights should be respected(Duarte et al, 2007; Rizzini et al, 2003). The authorizing legislation covers all
children under the age of 21 and, notably, does not single out one at risk group.
The legislation is broad but focuses on the entitlement to rights. The legislation
determined that children’s rights will be guaranteed through the activities ofmunicipal Administrative Councils. The Brazilian Child and Adolescent Rights
Act mandates that every one of approximately 5,700 Brazilian municipalities
should have two Municipal Child Councils: a Child Rights Council and a Child
Guardianship Council. In addition each state should have one State Child Rights

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IACAPAP Textbook of Child and Adolescent Mental Health“No child shall be subjected
to arbitrary or unlawfulinterference with his or her
privacy…nor to unlawful
attacks on his or her honour
and reputation.”
Convention: article 16.
Arab water carrier girls, Egypt(Brooklyn Museum)Council. The Child Rights Council has the responsibility for addressing childand adolescent rights at the macro level. The Guardianship Councils ensure thatchildren in need or at risk receive the best possible assistance. Their task is to makereferrals and guarantee the delivery of services, but not act as a provider. Access to
the Guardianship Councils can be by the children themselves, parents or a wide
range to other interested parties.
European Social Charter
The European Social Charter (Council of Europe) is a rights-based documentthat can and has been applied in the case of apparent discrimination of people withdisabilities. A notable example is the successful appeal by Autism Europe to theEuropean Committee of Social Rights complaining that in France “…children andadults with autism do not, and are not likely to, effectively exercise in sufficientnumbers and to an adequate standard, their right to education in mainstream
schooling or through adequately supported placements in specialized institutions
that offer education and related services.” In essence, the complaint alleged that
France is not taking enough action, as required under the revised European Social
Charter, to secure children and adults with autism a right to education as effective
as that of all the other children. While this is a specific example that has led to
remediation, the articles themselves serve as a model. The Code of Social Action
states that “…whenever the aptitudes of the person with a disability and thecapabilities of the family so allow, ensure access to the minor or adult with disability
to those institutions open to the whole population.” “Social and medico-social
action shall…promote the autonomy and protection of individuals…prevent
exclusion and correct its effects. It shall be based on continuous evaluation andneeds and of expectations…in particular of those people with disabilities.” “…
action shall respect the equal dignity of all human beings…” It will be interesting
to see if and how models such as these gain uptake in implementation of the newConvention on the Rights of People with Disabilities.

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IACAPAP Textbook of Child and Adolescent Mental HealthParadigm shifts for clinicians“Integrating the principles of children’s rights, equity and social justice into
practice will require a fundamental shift in the education of child health professionals
at all levels of training.” (Waterston & Goldhagen, 2008). If a high priority is tobe given to providing rights-based services to children with disabilities, it will be
increasingly necessary to engage, train and prepare non-government organizations,professionals, parents of children with disabilities and children with disabilities
themselves to work together to effect change. Professional training programs today
still focus on medicalization of disability. The focus on specialization for working
with differing populations of children with disabilities thwarts the desire to lessen
discrimination in services and the participation of children in the mainstream ofsociety. Professional concern goes beyond clinical care to research with who may
be most vulnerable.

IMPLICATIONS FOR RESEARCH
Contemporary mental health related research initiatives in low and middle
income countries have exposed yet another dimension of the need for humanrights protections and ethical standards. In low and middle income countries
impacted by war, natural disaster and displacements, researchers have engaged inpractices that need to be subject to human rights scrutiny. As regards children in
research in general, the justification of non-therapeutic research (studies that do
not purport direct benefit to participants) versus therapeutic research in children
has been debated (Ramsay, 1976; McCormick, 1976). It has been argued thatthe use of children as research participants is never justified if they cannot derive
benefit from participation (Ramsay, 1976) while others believe that as long as
research involves no discernible risks, pain, or inconvenience, research is ethicallypermissible (McCormick, 1976). United States federal regulations (Protection of

The Convention on
the Rights of the Childgoes well beyond
having implications forgovernments and should
be considered in relation
to all professional activities
that impinge on the livesof children including
clinical practice, research,
participation and education.

Children must be treated“…without discrimination of
any kind, irrespective of…
race, colour, sex, language,
religion…or other status.”
Convention: article 2.
Photo: Joe Healy and his family(Galt Museum & Archives)

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IACAPAP Textbook of Child and Adolescent Mental Health

Human Subjects) allow for non-therapeutic research that poses more than minimalrisk with children, if:
1. Risk is a minor increase over minimal risk
2. Procedures are commensurate with general life experiences ofparticipants
3. Findings are likely to yield knowledge of vital importance about theparticipant’s condition; and4. Parental permission and assent of the child are obtained.
History of medical and psychiatric ethical standards and guidelines
Ethical issues arise since youth are typically incorporated under the subheading “vulnerable populations.” Youth cannot care for or protect themselves
independently and become more vulnerable when suffering from a mental illness.
Some of these ethical issues around treatment, medication and research have been
discussed in the field of child and adolescent psychiatry and psychology (Munir& Earls, 1992; Belitz & Bailey, 2009; Frank et al, 2003). Specific to psychiatricresearch, Roberts (1999) has developed a conceptual analysis of ethically soundpsychiatric research protocols. Hoop et al. (2008) reviewed these topics in relation
to research with youth. An extensive resource listing for psychiatric research ethics
has been developed (Roberts et al, 1998). However, these guidelines are primarily
for domestic trials, where researchers have authorizing institutional review boards,
standards of care, and access to (often) multiple forms of “best treatment.”
The National Commission for the Protection of Human Subjects ofBiomedical and Behavioral Research (1977) allows studies that expose children to
greater than minimal risk without intent to benefit participants when knowledge
obtained is important to the future welfare of children. Sufficient evidence should
be provided to show that: 1) research-induced pain or stress is not severe; 2)“…a child who is seeking
refugee status or who is…arefugee…[shall] receive
appropriate protection andhumanitarian assistance…”
Convention: article 22.

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IACAPAP Textbook of Child and Adolescent Mental Healthpotential harms are reversible; 3) researchers are qualified; and 4) the setting isappropriate for the study (Fisher et al, 2007). However, when large asymmetriesof power exist, it is unclear if the settings are appropriate to perform studies that
do not provide benefit to participants.
Current medical and psychosocial guidelines for international research
The emergence of researchers from high-income countries conducting
trials in low-income countries, particularly related to HIV/AIDS, challenged
the Helsinki Declaration’s framework for work in developing countries (Zion etal, 2002). In 1993, the International Ethical Guidelines for Biomedical Research
Involving Human Subjects was produced to describe how the Declaration could
be effectively applied to developing countries (Council of Medical Organizationsof Medical Sciences, 1993). The Emanuel framework, though not specific toyouth, addresses medical ethical issues that arise when performing research in lowresource countries (Emanuel et al, 2000).
The psychosocial humanitarian field has ethical guidelines (Sphere Project,
2000; Morris et al, 2007; IASC, 2007; Allden et al, 2009) Others have suggested
frameworks for research in low-resource, refugee, and international settings(Schenk & Williamson, 2005; Fisher et al, 2002; Leaning, 2001). These guidelines
primarily aim at emergencies, conflicts or disasters, or focus on refugee youth inhigh-resource countries. Though the nature of child and adolescent psychiatry andallied professions demands knowledge of ethics (Munir & Earls, 1992), there islittle training on ethics considering cultural or global contexts in the mental healthfield and, in particular, for those with disabilities.
Human rights of vulnerable populations
Vulnerable populations are special groups of people who lack the ability toprotect their basic rights and liberties, making them open to exploitation. Children,in general, are such a population. War situations that create orphans who are notunder the legal protection of an adult compound the issue of rights protection.
War can also include specific populations (e.g., survivors of gender-based violenceor child soldiers) that may be heavily stigmatized by the community and may beat potential harm from research if findings are released to the government, rebel
forces, or the community.
Researchers engaged in therapeutic or non-therapeutic research should takeethical precautions and be sensitive to the needs of vulnerable groups. Children may
not feel comfortable telling foreigners or adults about their experiences, especiallyin areas of political instability, where adults were involved in the conscriptionof children into armed forces. Revelations may place children at increased risk.
Speaking at a child’s developmental level, researchers should be clear from the start
about their roles, what data will be collected, how it will be used, who will haveaccess to it, and what the limits of confidentiality are. Special care should be taken
to ensure that the collection, storage, and analysis of interviews or data are secured
so participants can be reassured that their information (such as status as a former
child soldier) will not be released to the government or rebel forces which could
lead to further stigma and discrimination.

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With limited access toresources for survival,families may be desperate
to help their children andmay view researchers as
foreigners, whom they
are used to seeing as
humanitarian aid workers
or as providers of food andmaterial aid.

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IACAPAP Textbook of Child and Adolescent Mental HealthChildren must be “protectedfrom economic exploitation... from [hazardous] work[and] all other forms of
exploitation.”
Convention: articles 32 & 36.
Child labour in a printing company(kinderarbeid in drukkerij). Nationaal
Archief/Spaarnestad Photo

Informed consent in low-income and post-conflict countries
Nontherapeutic research or the investigator’s intent to not benefit
participants is related to informed consent. Informed consent includes examination
about information, decisional capacity, and voluntary capacity (Roberts, 2002).
Information should be relayed about the research process, timeline, methods to
be used, and risks and benefits of participation in the study. Decisional capacity(Applebaum et al, 1982) is provided to researchers when individuals:• Can communicate a voluntary non-coerced decision• Can communicate an understanding of the risks and benefits ofaccepting or declining the treatment and potential outcomes ofalternative treatments, or research• Can appreciate the significance of the choice, and• Are sufficiently cognitively intact to understand the consenting process
and content.
Voluntarism capacity is equally important in war-affected countries, as being
able to express ideas without coercion or threats to their true wishes (Roberts,
2002).
Informed consent should also take into account cultural variables, including
education, concepts of youth, and respect for persons (Roberts, 2002). In areas
with a high degree of illiteracy, the signing of a consent form may signal mistrust
or dangerousness, especially in countries where the government has previously
tricked people into relinquishing rights, as was the case in the former Soviet Union
or Cambodia for example (de Jong, 2002; Ellis et al, 2007). In many low-resource
countries, children enter the labor force as early as age five, and communities may
have a different concept of who can provide consent for youth (Schenk & Wiliamson,
2005; Boyden, 2004). Researchers should have input from the community thatis familiar with age, gender, social roles and expectations for child development
and behavior (Schenk & Williamson, 2005). In a collective-society, an individual
may consent to participate in research out of direct or indirect pressure from the

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IACAPAP Textbook of Child and Adolescent Mental Healthcommunity, challenging autonomy (Ellis et al, 2007). The focus should be moreon the achievement of true informed consent, rather than the final product of asigned document. This can be attained through research advance directives, which
are discussions between researcher and subject, about the subject’s motivations
for joining the study, discussion about the likely outcomes of the study, and theprotocol or procedure that will occur. Should subjects later enter a state where
they lose ability to express preferences, the document will be able to direct next
steps. Another way of solving this problem is by the use of verbal informed consent
in the presence of a family member or friend (European Medicines Agency, 2009).
Assent rather than consent is often used. This more passive approach to ensuringthat the subject is informed is often easier to obtain in more naturalistic settings
but runs the risk of not truly ensuring an informed subject population.
Asymmetries of power and information
When researchers from high-income countries come to devastated andsocio-economically severely disadvantaged communities to conduct mental healthresearch, local people may be at high risk of being exploited, as a researcher’s social
status can impact on research participation (Boyden, 2004). With limited accessto resources for survival, families may be desperate to help their children and mayview researchers as foreigners, whom they are used to seeing as humanitarian aid
workers or as providers of food and material aid. As such, they may interpretparticipation in a study to be linked to the provision of assistance. Some childpsychiatry research protocols offer clinical monitoring, which may be a strong
incentive for those in war-affected areas that do not have clinical care accessible(Hoop et al, 2008). Moreover, well-trained Western mental health researchers
may try to adapt their models of healing to a population foreign to them, and local
communities may not have the free agency to decline participation, discuss negative
effects or the impact on their local beliefs and practices, may feel coerced, or may
report what they think the professional wants to hear (Fisher et al, 2002; Allden etal, 2009; Ellis et al, 2007). The asymmetry may extend to the involvement of local
clinicians and researchers who compromise their local identity and concern for
their constituents to be part of a more prestigious and sometimes more lucrative
enterprise.

Contemporary mental
health related research
initiatives in low andmiddle income countries
have exposed yet anotherdimension of the need forhuman rights protections
and ethical standards.

There can be asymmetry in the prioritization of needs as well. Researchersand clinicians who are foreign to the local community may not have research
priorities that are congruent with local ones, despite the best interests being in
mind. Often, foreigners have control over how funding will be used, program
development and planning, determining who will receive services, and who will
ultimately be trained to provide those services. Local governments are dependenton donors to fund research on donor-determined needs. This dependence on
external funding and hence external researchers, may exclude local academics or
Ministries from the opportunity to engage in an ethical analysis about subject
communities, projects, and implications.
Ethical challenges inherent in therapeutic research
The definition of therapeutic research in low-resource settings is challenging,as a mental health researcher’s role in these settings can vacillate between being
an investigator and a provider of care. Moreover, the field of mental health isunderdeveloped in these countries, causing Western clinicians to import andThe UN Convention on the Rights of the Child

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IACAPAP Textbook of Child and Adolescent Mental Healthadapt interventions to different cultural contexts. The roles of researchers and theidentification of the most appropriate intervention will be discussed below.
The boundary between researcher and clinician
The primary intent of a clinician is to provide help; whereas the primary
intent for a researcher is to answer a scientific question. Inherent in the workwith vulnerable children is the more porous boundary between researcher andclinician. Often there are no mental health clinicians, and the researcher is the first
person to ask potentially emotionally charged questions about a child’s experiencein war. Interviews themselves are interventions. The researcher may knowingly
or unknowingly become a clinician. Though the goal of a researcher is neutral−
to collect data−each contact with a child is potentially a clinical one. There issome evidence that sharing a common stance with clients is valuable (Lustig etal, 2004), but likewise certain interventions may be harmful (Morris et al, 2007;
Goodman, 2004). Psychiatrists, specifically, face additional difficulties in the field,
as physicians may be confused about the divide between being a provider versus
using patients to answer research questions (Jesus & Michael, 2009).
Conducting research without ensuring that appropriate services are available
to those researched is unethical (Allden et al, 2009). Providing narratives of recent
traumas, particularly in conflict situations, can put people at risk for psychologicalharm when not supported (Goodman, 2004). Interviewees with mental disorders,
prior trauma, and low social support may be at higher risk for emotional distress(Dyregov, 2004; Jorm et al, 2007). However, there may not be a formal mental
health system in war-affected, low-resource countries, with few clinicians or
institutions to refer them to (de Jong, 2011; World Health Organization, 2005),
and even in high-income countries like the United States, there are regions where
many have difficulty accessing mental health services (Wang et al, 2005). Though
researchers may not have the skills or means to provide support or assistance, there
should be an obligation to learn about and access such resources (where they exist)
prior to commencing research, or to develop supports for those who may express
distress in the course of the research.
Identification of the most appropriate intervention
The Declaration of Helsinki proposes the best current intervention for theactive comparator in a clinical trial. There are multiple established mental healthinterventions the superiority of which is debatable, depending on expert opinion.
Randomized trials evaluating a school-based intervention (including traumaprocessing activities, cooperative play, and creative-expressive elements) for waraffected youth in low-income settings in Indonesia (Tol et al, 2010), Sri Lanka(Tol et al, 2011), Nepal (Jordans et al, 2010) and Palestinian territories (Khamis etal, 2004), found promising improvements on select outcome measures for specificsub-groups, and others with no main effects on specific outcomes (Tol et al, 2011).
In Uganda, a randomized control trial of interpersonal group psychotherapy with
war-affected and displaced adolescents found effects for depression with girls only,
and no effects for anxiety symptoms, conduct problems or functional impairment(Bolton et al, 2007). A randomized control trial in Bosnia-Herzegovina foundimprovements in posttraumatic stress disorder (PTSD), depression, andmaladaptive grief with children receiving school-based trauma and grief-focusedgroup psychotherapy, and improvements in PTSD and depression, but not

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IACAPAP Textbook of Child and Adolescent Mental Healthmaladaptive grief in a classroom-based psycho-educational and skills intervention(Layne et al, 2008). A review of the evidence for interventions described as
Sphere standard mental and social health indicators “suggests that even effective
interventions can be harmful if applied at the wrong time, or targeted at the wrong
segment of the population” (Morris et al, 2007).

CONCLUSIONS
It is remarkable that in the modern era the rights of children withdisabilities remain such a challenge. Maltreatment of children with disabilities
must be considered a critical public health issue (Hibbard et al, 2007). Contrast
the availability of resources for children with a host of medical illnesses to thoseavailable to children with disabilities. International agreements are in place to end
the era of isolation, abuse and neglect. The challenge is to increase awareness ofthe current situation and to educate a broad range of individuals to exercise theirrights. Incrementally increasing participation of people with disabilities will lead toa lowering of the barriers that now prevent full participation in society.
The ethical evaluation of non-therapeutic research for vulnerable and waraffected youth demands researchers and clinicians to be sufficiently cautious with
their work with vulnerable populations who are living in contexts with inherent
asymmetries of power. Obtaining true informed consent from caretakers andassent from children should be a minimum standard for non-therapeutic research.
Those conducting therapeutic research also have ethical considerations with theporous boundary between researcher and clinician, and how to determine themost appropriate therapeutic intervention to study. The benefits to society of
documenting the effects of stress, evaluating the need for and access to mental
health and other services, and the effectiveness of services for war-affected youth,
all of which have potential to help society in the future, should be weighed against
the mental health risks of conducting research in these settings.
The Convention and the CRDP offer hope for a new era respectful of humanrights in the conduct of society and in research to find evidence for appropriatecare. “The inclusion of children with disabilities is a matter of social justice and an
essential investment in the future of society. It is not based on charity or goodwill
but is an integral element of the expression and realization of universal humanrights.”The UN Convention on the Rights of the Child

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IACAPAP Textbook of Child and Adolescent Mental Health

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