You Make Me Sick! Review of Factitious Disorder by Proxy
Most people have heard terms like depression, anxiety, even schizophrenia; diagnoses that seem to receive a lot of attention in the general public. But little public awareness seems to exist about one of the most lethal forms of child abuse, known as Factitious Disorder by Proxy, formerly termed Munchausen Syndrome by Proxy. Factitious Disorder by Proxy (FDbP) is classified in DSM-IV as a not-otherwise-specified Factitious Disorder, and is followed up Appendix B as “Other conditions that may be a focus of clinical attention.” It describes a behavior pattern in which a caregiver deliberately exaggerates, fabricates, and/or induces physical, psychological, behavioral, and/or mental health problems in those who are in their care, while claiming to medical staff that they don’t know the cause of the problems. In other words, an adult caregiver either makes a child appear sick by fabricating symptoms or actually causes harm to the child, in order to gain the attention of medical providers and others. The methods of inducing illness fall into 4 general categories: poisoning, bleeding, infections, and injuries. For example, a mother may fake symptoms of illness in her child by adding blood to the child's urine or stool, withholding food, falsifying fevers, secretly giving the child drugs to make them throw up or have diarrhea, or using other tricks, such as infecting intravenous (given through a vein) lines to make the child appear or become ill. Instead of inducing or fabricating an illness, they can also withhold appropriate treatment for a legitimate illness. Importantly, while most physical abuse is in response to some behavior (e.g. bedwetting), assaults on FDbP victims are typically unprovoked.
The warning signs of this disorder include a history of many hospitalizations for the child, one or more unusual illnesses or deaths of children in the family, a strange set of symptoms with inconsistent diagnostic test results, and the complete remittance of symptoms in the absence of any contact with the caregiver in question. There are also warning signs associated with the caregivers, as they are typically very knowledgeable about health-related and medical areas, either through previous employment in health care settings or because they have done significant research. They appear very cooperative with medical staff and very responsive to their children, but only when they are aware of being observed. Caregivers also tend to be pathological liars, have a history of their own neglect and/or abuse, and there tend to be several life stressors present during that time such as marital issues or general family dysfunction. Studies have indicated that 84% of caregivers have lifetime psychiatric histories such as self-harm behaviors, substance misuse, and personality disorders such as Histrionic and Borderline.
Regrettably, there are several obstacles to diagnosing this disorder. For example, parents will often work with numerous doctors and enter their children into numerous hospitals when suspicion arises, making it challenging to have accurate medical records that document a specific history. Doctors also unfortunately become intrigued by unique cases, and become invested in solving the supposed puzzle. Currently, the only objective measure used to diagnose FDbP is covert-video surveillance placed in hospital rooms of suspected families, which has been shown to be extremely effective in several studies. However, significant issues surrounding the use of this screening device have arisen related to privacy laws, ethical and moral obligations to patients and families, and the appropriateness of the medical community using this tool versus law enforcement agencies.
Because of these issues, estimates of prevalence vary dramatically from affecting one child in a million to 2.8 kids out of 100,000. Of about 2.5 million cases of child abuse reported annually, 1,000 of those are estimated to be due to FDbP. The majority of victims tend to be preschool-aged children, though cases involving adolescents have also been known. Women are also more likely to be the perpetrator, with research estimating 76.5% are mothers and 6.7% being fathers. Although males and females are equally likely to be the victim, sons are three times more likely to be abused if the father is the perpetrator.
Current treatment options for the perpetrator include cognitive behavior therapy and other forms of psychotherapy, but there is little available data showing the effectiveness of such intervention. The only true treatment for victims is a “parentectomy,” or complete removal of the caregiver from the child. This requires a team of professionals working together, such as social workers, foster care organizations, child-protective services, law enforcement, and health care providers. Unfortunately though, even if this occurs, the long-term prognosis for victims is poor. These children are often hospitalized with groups of symptoms that don't quite fit any known disease. Consequently, they are made to suffer through unnecessary tests, surgeries, or other uncomfortable procedures, which lead to iatrogenically induced conditions ranging from scar tissue, adverse drug reactions, abscesses due to numerous injections, impairment of gastrointestinal function, serious psychiatric problems, destructive joint changes and a limp, and mental retardation with cerebral palsy and cortical blindness. Alarmingly, studies have shown a mortality rate of between 6% and 10% of FDbP victims, making it perhaps the most lethal form of child abuse as described above.
Furthermore, child victims also learn that they are most likely to receive the positive attention they crave from their parent/caregiver when they are playing the sick role in front of health care providers, and internalize how happy their parent becomes when they play along. This leads to increased emotional/behavioral problems of their own, and many case reports describe FDbP victims who grow into Munchausen syndrome patients or continue the pattern of FDbP abuse in their own children. Seeking personal gratification through illness can thus become a lifelong and multi-generational disorder.
Clearly the fields of psychology and psychiatry need to formulate better diagnostic criteria for FDbP that emphasize clinical characteristics of perpetrator rather than focusing on the associated features of the proxy victim. The creation of better inclusion and exclusion criteria and formally operationalized definitions would then allow for development of more specific, sensitive, and valid assessment methods. Increased awareness of the disorder within the general population and among medical practitioners will also be vital. For example, social workers, who may have earlier/broader opportunities to work with disturbed families than other professionals, have less awareness of the disorder as compared to psychologists and psychiatrists. Furthermore, they typically only utilize colleagues as their primary source of info, rather than having access to research journal and reading empirical studies or attending research conferences. If significant changes to these areas are made, perhaps as a field we can begin to reduce the prevalence of such an atrocious albeit rare disorder.
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