Contrary to the popular belief that young people with disabilities and serious chronic illnesses are protected from abuse and exploitation, there is evidence that this group of adolescents is, in fact, at an increased risk for sexual abuse. In a British Columbia survey of 16,000 high school students, for example, 38% of those with chronic conditions reported being sexually abused or assaulted, compared with 17% of those without.1 For purposes of analysis, individuals were defined as having a chronic condition if they met one of three criteria: defined themselves as disabled, missed significant amounts of school for health care, or had a high degree of contact with the health care system. While this statement addresses the issue of sexual abuse, it appears this population is also at an increased risk for both physical and emotional abuse.
Some adolescents with chronic conditions are particularly vulnerable to abuse as a result of cognitive, sensory, or communicative problems. All too frequently, they may find themselves in situations where they are dependent on the unsupervised care of others in schools, institutions or at home. Societal values and the care systems which exist for these young people may, in addition to their disease or disability-specific characteristics, further increase the risk for abuse.Societal Factors
Chronically ill and disabled individuals often have little control over decisions directly affecting them, particularly regarding health care and education. This lack of power means both the potential victim and the abuser see persons with chronic conditions as externally controlled, and as such, helpless to stop abuse or mistreatment. With disempowerment comes a lack of voice, a reluctance on the part of individuals and institutions to hear what abused adolescents have to say. For many ill and disabled people, the social isolation caused by institutionalization, hospitalization, "specialty" education and/or overprotection can push them to the fringes of society, where they are vulnerable to predators, often with little chance of detection. In many cultures, people with visible disabilities are viewed negatively, creating feelings of unease, pity and contempt, with non-disabled individuals perceiving themselves to be superior. For young people, growing up with a disability or illness can instill feelings of being flawed or bad, causing them to believe that mistreatment or abuse is deserved and so should not be resisted or reported.Educational Factors
Lack of education also plays a significant role in abuse of this population. All too frequently, youth with chronic conditions receive less formal sexual health education than their peers, primarily as they are considered asexual or unable to understand sexuality. Recurrent absences from health education classes, because of frequent hospitalizations and appointments, may also account for this lack of sexual health instruction. In many instances, the availability of appropriate educational materials is also limited.Health Care System Factors
For young people with chronic conditions, tolerating and expecting a low level of privacy and a high degree of physical intrusion is a way of life. At times, they may have been forcibly restrained when resisting frequent physical examinations or attention to bodily needs, and therefore have learned not to struggle or protest. Increased exposure to procedures involving sedation or anaesthesia may potentially increase the risk of abuse. If procedures are performed in demeaning or insensitive ways, children may feel they should tolerate the abuse.Individual Factors
Added to these external factors are limitations imposed by the adolescent's particular condition. A chronically ill youth with generalized weakness, for example, may have difficulty fighting off an attacker. Someone afflicted with mobility problems may be unable to escape such an attack. Other limitations, such as speech and language difficulties, may interfere with the ability to call for help, verbally resist the abuser, or report the abuse. Youth, especially those with limited intellectual abilities, may be manipulated into "consenting" to sexual acts.
Parents, caregivers, and health care workers should maintain a high level of suspicion regarding sexual abuse against this population. Patients who present with STDs, vaginal or anal trauma, unexplained UTIs, and who do not report consensual sexual activity, must be questioned about sexual abuse, using the patient's preferred method of communication (e.g., ASL or Bliss). Other less specific indicators frequently associated with abuse are: unexplained fear of physical or gynecologic examination; avoidance of specific caregivers or caregiving situations; self-mutilating behaviours; sleep disturbances; encopresis; sexualized behaviour; sex experimentation with age-inappropriate partners; sexually abusive behaviour toward others; eating disorders; running away; and somatic complaints with no organic cause.
To facilitate and ease the process of disclosure, questioning of patients should be conducted according to their preferred method of communication. The medical community should be aware of current concerns with regard to false allegations that have been made through "facilitated communication." The formal process of disclosure must conform to legal and reporting standards. In instances where the patient has a communication disorder, it may be difficult to find an interpreter skilled both in interpretation and sexual abuse issues. In communities where there are no such qualified individuals, physicians should promote the creation of educational programs to train them. Also important is identifying individuals to whom children and youth with chronic conditions can turn for help if they are abused.
Physicians should advocate for institutional policies, including:
In addition, parents should be advised to inquire about these institutional policies and to conduct their own intensive screening when hiring private caregivers. Those working with teens with chronic conditions should also understand the full range of normal sexual activity (including masturbation) for this age group, and should respect the privacy requirements of adolescents.
A review of the available material makes it clear that proper training of licensing officers in issues of sexual abuse is essential. Physicians can be involved in the development of resources for this training.Educational
Adolescents with chronic conditions, parents, and caregivers place high priority on access to appropriate information about sexuality. This includes information specific to different developmental levels and disabilities with regard to personal rights, safer sex, and sexual abuse, and could also include a component on assertiveness training and self-defense. Physicians could have a list of resources available for parents on recognizing their children's own expression of sexuality and on their vulnerability to abuse.Physicians
Respect for privacy during physical examinations is imperative. Physicians have an excellent opportunity to demonstrate this respect by draping patients and allowing them to stop the examination if they feel uncomfortable. Attending physicians should also model sensitive, respectful physical examination techniques to trainees. In addition, physicians should encourage adolescents with chronic conditions to take a more active role in decision-making by helping them feel less dependent and more powerful in determining their own care. To achieve this, a happy balance between cooperation and normal demands for autonomy needs to be encouraged. Excessive reliance on rewards and punishments is not wise, as it may undermine patients' ability to recognize and resist abuse.
Paediatricians are in an ideal position to play a significant role in preventing sexual abuse of children and youth with disabilities. Over the years, they establish long-term relationships with the families of children and youth with chronic conditions. It is imperative, therefore, that paediatricians, as part of their mandate to educate and advocate for the welfare and well-being of children and youth, assume the responsibility to start early in providing anticipatory guidance regarding sexuality, empowerment and abuse.