According to epidemiological surveys estimates, there are approximately 5.4 million children of patients with severe mental disorders in our country. This group is called "invisible children". Their risk of suffering from severe mental disorders is 2.5 times that of children in the general population. They also face problems such as lack of companionship, emotional neglect and even violence after their parents become ill. Special growth difficulties will also cause their self-efficacy to be low, which will affect their academic development and employment status, and form the intergenerational transmission of mental illness and difficulties.
Ma Hong, a psychiatrist at Peking University Sixth Hospital, and his team turned their attention to this group of children, trying to explore effective ways to break this intergenerational transmission.
Origin During a follow-up visit
Ma Hong was beaten by a mental disorder patient whom he had been treating for many years, and three ribs on his right side were fractured.
Ma Hong is a psychiatrist at Peking University Sixth Hospital.
"Eat less desserts and control your weight." Facing obese patients, Ma Hong gave some life suggestions. Unexpectedly, the patient suddenly moved his hands.
"The one who hit me was a COPMI." Ma Hong explained that COPMI is the abbreviation of Children of Parents with mental illness, which is translated as "children of parents with mental illness." Having worked at Peking University Sixth Hospital for nearly 40 years, she often wonders, if mental health services or intervention are provided earlier for this group of people, can the intergenerational transmission of mental illness be reduced or avoided? The idea of
dates back to Ma Hong’s follow-up visit in Yunnan Province in 2007. At that time, in addition to daily outpatient services, Ma Hong was also responsible for the work of deputy director of the "686" project office. The so-called “686” project is a centrally subsidized local management and treatment project for severe mental disorders.
After the SARS epidemic ended in 2003, our government strengthened the construction of the public health governance system. In December of the following year, the "686" project received a special allocation of 6.86 million yuan from the central government, aiming to improve the community's prevention, treatment and management capabilities for serious mental illness. Its main tasks are to register, evaluate and regularly follow up patients, and provide free drug treatment, emergency response, etc. to patients in need.
"Severe mental disorders include schizophrenia, schizoaffective disorder, paranoid psychosis, bipolar disorder, mental disorders caused by epilepsy, and mental retardation accompanied by mental disorders." Ma Hong introduced that severe mental disorders are chronic, long-term, and disabling, and patients' families have a prominent phenomenon of becoming poor and returning to poverty due to illness.
Ma Hong once visited the homes of patients with mental disorders in a remote village in central and western Yunnan Province to follow up. The adobe house was small and cramped, without lights, and the cotton wool piled on the hard bed had an unpleasant smell. The female patient was cleaning the yard alone. Although she received periodic treatment, her physiological functions had declined, and her long, dirty hair was spread out randomly. There was a girl in the corner of the yard with a ponytail, leaning against the wall, resting her chin on her right hand, looking at Ma Hong and his group, and at her mother. Ma Hong approached the girl, sat next to her and started talking. The girl is 15 years old and has just graduated from junior high school. Considering her mother's special situation, she is confused whether to continue studying or go out to work.
"Would you like to help mom wash her hair?" Ma Hong asked tentatively. After a moment of silence, the girl said, "My mother has never spoken to me, and I don't know how to communicate with her." "She hasn't spoken to you since you were born?" Ma Hong was stunned. "No." The girl replied without any hesitation.
After returning to Beijing, Ma Hong could not forget his conversation with the girl. Behind the girls lies a large but long-ignored group - children with mental disorders. As of the end of 2020, there were 6.43 million registered patients with severe mental disorders in my country, 62.1% of whom reported a history of marriage, and about one-third of the patients had a history of childbirth.
"How can we help these children?" Ma Hong knows that mental illness is related to the genetic gene and the acquired environment, and the acquired environment can be changed. At that time, the "686" project services were still patient-centered, and mental health workers lacked attention to the needs and problems faced by families with mental disorders, especially minor children, and lacked the knowledge and skills to provide intervention services.
must find a feasible path.So Ma Hong and his team began a long exploration.
What do they need?
After completing his follow-up visit in Yunnan, Ma Hong visited many families of patients with severe mental disorders across the country and gained a deeper understanding of the plight of the patients' children.
In a family of five in the Northeast, the mother and two daughters both suffer from mental illness. The son is mentally healthy. After graduating from medical school, he is temporarily unemployed and returns home to take care of his mother and sister. There was no furniture in the home and everything was scattered around.
What are the needs of children of people with mental illness? What is their world like? As one of the first psychiatrists in China to engage in research in this field, Zhou Tianhang, a psychiatrist from the Sixth Hospital of Peking University, took the children of mentally ill patients as the research object for his graduation thesis as early as 2016 when he was studying for a master's degree at and Harvard . Her main research interest is understanding the impact of a parent's mental illness on their children and how this impact is perceived by adults in the family, including the patient.
Initially, Zhou Tianhang planned to find 60 children of patients with mental illness as interview subjects, and asked Ma Hong for help. Ma Hong communicated with almost all the patient families he was familiar with before he got a reply from two families. Once, as soon as a patient learned of Ma Hong's intentions, she got up and left. When she walked out the door, she turned to glare at her and said, "Don't get involved with my son! My son will never talk about this! There is nothing wrong with my son!" Since then, the patient has never called Ma Hong again. Ma Hong also tried to find families willing to participate in the research through familiar community preventive doctors, but was also rejected.
In Zhou Tianhang's view, the long-term stigma and shame of mental illness in society have affected these families, causing them to remain secretive about the topic of mental illness. Even if some families agree, the family members will request that the interview be conducted away from the home environment.
In fact, rejection does not mean that the patient's family has no need for intervention. Some parents spank their children because their condition is unstable or due to inadequate medical treatment, which makes them unable to control themselves. Zhou Tianhang once saw a case in which a parent strangled his child's neck with his hands when the illness broke out. After the child subsided, he felt very regretful and locked himself in the room. In this cycle, parents gradually close themselves off and become farther and farther away from their children, and the companionship and care needed for their children's growth will be missing.
Compared with physical harm, the burden and trauma on children's minds are more hidden. Some children have witnessed their sick mothers being tied up by many people and taken to the hospital. Some children are afraid of seeing their parents sick, and even kneel down and beg their parents to take the medicine. Different scenes, different dimensions, and different levels of harm weave the world they live in - loneliness and helplessness.
“In foreign countries, these children are called ‘invisible children’, which means ‘invisible children.’” Zhou Tianhang said that if there is a patient with a mental disorder in the family, the focus of the family is often on treating the disease, and the needs of the child are ignored. The family's concealment of illness can make children feel that they are excluded and not part of the family. Sick parents require medication all year round. Their physical condition and the effects of medication make them unable to fulfill their role as parents. Some sick parents are worried about infecting and affecting their children, so they actively or passively leave their children, resulting in no communication or even any contact between parents and children.
"Suffering from violence, witnessing violence, poor communication, lack of support in the growing environment and other factors are added together. If there are no other relatives in the family to take care of them, cruelly speaking, the child will grow up, take care of himself and fend for himself." Zhou Tianhang said.
Zhou Tianhang’s interview results show that because their parents suffer from mental illness, many children cannot receive careful care from their parents, and even have to act as family caregivers, making it difficult to get timely response to their physical and mental growth needs. At the same time, the pressure from adults within the family can easily be transmitted to the children. When children cannot find suitable emotional outlets and emotional support inside and outside the family, they can only digest it alone, which often leads them to anxiety, low self-esteem, and helplessness.
These children don’t know when their parents will get sick again, they don’t know if they will lose their parents, and they don’t know if they themselves will also be troubled by this disease. Fear of the unknown often overwhelms children. "Perhaps companionship is what children need most. Having a healthy and normal adult around them can help them." Zhou Tianhang has a firm attitude on this.
Children played games together at the Changchun theme camp of the "CAFF Garden" project.
A "Garden of Care"
While investigating the needs of COPMI, researchers are also investigating what services should be provided to them.
Guan Lili joined the Public Service Department of Peking University Sixth Hospital where Ma Hong worked in 2008. The following year she was sent to Australia to study children’s mental health services, focusing on psychological intervention services for children of patients with mental illness.
"Whether we visit the countryside, participate in the work of relevant departments, or participate in international visits and exchanges, we will always think about how to serve this group, how to use international resources and let these international resources take root on Chinese soil." Guan Lili said.
2016 is an important node. On the recommendation of relevant experts from the Department of Mental Health of the World Health Organization, Yu Xin and Ma Hong, former deans of Peking University Sixth Hospital, led a team to represent China in the cooperative project on COPMI family intervention initiated by and EU .
At that time, vigorously promoting preventive projects was one of the important development trends in the field of global mental health services. The consensus in the academic community is that the intergenerational transmission of mental disorders is the result of the interaction of a series of factors, and social psychological factors including psychological flexibility, disease cognition, parental upbringing, social support, etc. can be changed later in life. If children of patients with mental disorders can be provided with preventive intervention in cognitive, behavioral or psycho-education areas, their risk of developing psychological problems will be significantly reduced.
In the same year, Ma Hong and Guan Lili went to Basel, Switzerland to attend the global COPMI annual meeting for the first time and were invited to join the academic committee.
"We must form an intervention method suitable for China." This is the philosophy that Ma Hong and Guan Lili have always adhered to. In 2018, Ma Hong and Guan Lili launched the "CAFF (Care for Family, Caring for Families with Mental Disorders) Garden" public welfare project in Yunnan and released a project logo. The logo is surrounded by a variety of flowers and plants, conveying the team's philosophy and expectations - the garden is inclusive, rich and diverse, and every child can be nourished and grow healthily.
A new problem once again faced Ma Hong and his team - it was not easy for this complex group to open their hearts and seek help. "When helplessness becomes a habit, they will have a lot of worries when facing sudden help." Guan Lili said.
Based on foreign experience, the camp activity of "organizing children to play together" became the CAFF team's attempt to open the door to services. Ma Hong selected cities with better implementation of the "686" project. These cities have relatively complete service networks and grassroots precision prevention personnel who are caring, motivated and capable of working.
"At that time, we were very optimistic and thought about providing free services to children and families. How could anyone not participate?" In fact, there will still be obstacles. At a camp held in Mianyang City, Sichuan Province, the team made 200 phone calls, but in the end only 20 children were mobilized.
The economic conditions of these children's families are relatively poor, and many of them are traveling away from home for the first time. Some specially wore new clothes with creases on them; some came without suitcases and carried a plastic bag.
"Some children have never stayed in a hotel. You have to teach them how to check in and eat at the buffet, so that the children can learn more about social life." Ma Hong said. At that time, Ma Hong made a request - what it looks like when you enter the room, what it looks like when you check out. Finally, when Ma Hong went to check, the children all did it, even the turned-out edges of the quilts were exactly the same. At the
camp, the team specially set up a "treasure hunt" game session. Each child could go into the room and pick out a piece of clothing, a book, and a pencil case. Guan Lili is responsible for assisting the children in finding "treasures". At the end of the game, she talks to the kids about their lives.A 16-year-old boy took the initiative to find Guan Lili and said, "My mother has never spoken to me. Even if I call her mom, she never pays attention to me." The child shed tears as he spoke. Guan Lili cherishes this expression because it represents trust.
At the end of the camp, Guan Lili was very pleased to see the children and volunteers performing on the stage. From being silent to learning to express themselves, the children have changed significantly in just a few days.
"We hope that the camp can provide a safe and inclusive soil for children. It takes time to build trust, but once the children feel comfortable and assured, they will be willing to open their hearts, actively express themselves, and contact the outside world." Guan Lili said.
Later, Ma Hong and his team designed different types of camps, such as sports games, workplace experiences, etc. From 2019 to 2020, "CAFF Garden" successively held more than 10 psychological growth camps for minor children of patients with mental illness in Beijing, Xiamen City, Fujian Province, Changchun City, Jilin Province, Dalian City, Liaoning Province, Taiyuan City, Shanxi Province, Zigong City, Sichuan Province, and Mianyang City, . In the past two years, more than 300 young campers, more than 170 parent campers, and more than 300 staff and volunteers have participated in the activities. Volunteers include doctors, nurses, psychological counselors, rehabilitation therapists, teachers, social workers, college students, etc.
Waiting to bear fruit
Organizing camp activities is just the first step for the CAFF team to provide services to families of patients with mental disorders. Ma Hong and his team have successively designed and developed the "Sunflower Project" and "Let's Chat". Whether it is a new project or an old one, Ma Hong calls it “scientific public welfare”.
"Professionals should provide professional support, and we hope to break the intergenerational transmission of mental illness." Ma Hong said that this is the original intention of her and her team.
provides longer-term, effective and professional services, which is the current and future goal of Ma Honghe's team. On the one hand, they need to explore whether they can find a breakthrough in biological heredity, find the genetic target of the disease, and cut off direct inheritance; on the other hand, they need to use scientific methods to verify that social support is effective in preventing the intergenerational transmission of mental illness.
"While providing services, we are also accumulating evidence-based evidence of this kind of intervention, thereby ensuring that effective services can cover more people." Ma Hong said that with the advancement of CAFF's work, more and more policies have been invested in children of patients with mental disorders.
In 2019, 12 departments including the National Health Commission jointly issued the "Healthy China Action-Children and Adolescents Mental Health Action Plan (2019-2022)", which proposed to assist the growth of children with mental disorders through family care education, voluntary assistance and other forms.
In January 2020, the "Opinions on Further Strengthening the Protection of De facto Unsupported Children" jointly issued by the Ministry of Civil Affairs and other 12 departments began to be implemented, including minor children of patients with severe mental illness into the scope of protection of de facto unsupported children.
"We hope that everyone can see their shining points, see their inspiration and strength." Ma Hong said, in addition to hoping that society will pay more attention to and support the children of patients with mental disorders, we also hope that the government can provide this group with more dimensional and more precise protection in terms of policies and laws.
"We don't want to be a protective umbrella, but more to help them explore their own potential and let their vitality burst out." Guan Lili said that CAFF is like a garden. Children of patients with mental disorders may be cacti, sunflowers , or big trees. Everyone has their own vitality, waiting for the flowers of time to bear fruit.
Text: Health News reporter Yang Jinwei
Picture: Provided by the interviewee
Editor: Yang Zhenyu
Proofreading: Guan Zhongyao
Review: Xu Bingnan Chen Fei
